Health Innovation Network Involvement Strategy 2022-2025

Group of people collaborating

We want to work in partnership with people in south London to acheive our mission of speeding up the best of health and care together.

We believe that, by sharing their insights and knowledge, people with lived experience of health and social care services can help us to improve and innovate health and social care.

The Health Innovation Network (HIN) has a history of involvement and co-design activity and we want to build on this and create a more embedded and consistent approach.

This strategy, and the plan that will deliver it, has been co-developed with people with lived experience and HIN colleagues, other partners and stakeholders.

Together, we will make health and care better

We are excited to launch applications for our Lived Experience Partner Role. This is a paid role which will include:

  • Working with HIN staff to advise on involvement activities in projects
  • Reaching out to your networks to assist with recruitment of other people with lived experience to support our projects
  • Collaborating with HIN staff to input your lived experience where it can best impact the organisation’s areas of work
  • Supporting other people with lived experience who are involved in HIN projects

View the role descriptor and application form. Applications close on the 27th November 2022. Please contact the team if you have any queries.

Introduction

This strategy represents a reset in our thinking and a moment of renewed effort to co-produce health innovation.

Our experiences of the last two years, and recent conversations with people with lived experience of health and care, have given us a new perspective. The COVID-19 pandemic has further exposed the importance of innovation and improvement, including digital experience.

Since the HIN formed in 2013, our project teams have tried lots of great ways of involving people in our work and intend to build on this learning and energy.

It is of prime importance that our work improves the health and care outcomes for the diverse populations within south London and reduces inequalities. We want this belief in equality, diversity and inclusion to be enshrined in our approach to involvement.

Development of this strategy has involved an open and honest look at both the psychological and practical barriers to involving people and co-production within the HIN.

We are fortunate in that we have an experienced team, people throughout the organisation with knowhow, a committed leadership, and an openness to learning and trying new approaches.

We want to build on our local connections and encourage more organisations and people to join us in our work.

Involvement: why does it matter to the Health Innovation Network?

Involvement is a critical factor in enabling our organisational priorities. Through effective involvement, we can:

  • Ensure the voice of people who live and work in south London is embedded in the selection of national innovation priority programmes, and their local translation.
  • Prioritise the outcomes that matter to people to be integral to our health and care change programmes.
  • Begin with the needs of people who use services as the starting point for the adoption of innovations. 
  • Include the personal experiences of people and communities in evaluating the effectiveness of innovations in real-world settings

Development

We have brought together over 65 people from across south London: people with lived experience of health and care, HIN colleagues, partners and other stakeholders to explore:

• Why involvement and partnership with patients and the public is integral to the HIN and what we need to do to strengthen this.

• How we can cultivate meaningful involvement and partnership with patients and the public.

• How we can move to a more structured approach, with involvement and co-development embedded in our work.

• What would a successful community of people supporting involvement look like.

• How we can strengthen involvement in the decisions we make as an organisation.

Our strategy

Who

Alongside Health Innovation Network staff, our strategy is also relevant to our partners and the wider health and care ecosystem, including:

  • People who live or work in south London
  • Patient groups and Community and Voluntary Sector
  • HIN member organisations, including health and care organisations across south London, academia, local government and industry partners
  • Innovators; organisations and individuals helping health and care to advance and improve
  • National and other stakeholder organisations, including the AHSN Network
  • Funding bodies

Why (our Involvement Values)

Our Involvement Values closely align to the values which guide the Health Innovation Network’s mission:

  • Brave: We encourage and support our colleagues to be open and willing to change as a result of involving people
  • Kind: We care about our communities and want people to have a positive experience when they work with us.
  • Together: Our core belief is that we can close the health inequalities gap by including diverse communities in the design and development of innovations.
  • Different: We find strength in our differences and are committed to involving people with a multitude of perspectives so that we can identify areas to improve and try new things.
  • Open: We’re open about what we do, and we continuously share what we learn with those who have been involved and helped us to make a difference.

What (our Involvement Principles)

  1. Ensure that involving people is embedded in all our work.
  2. Embed our belief in equality, diversity, and inclusion in our approach to involving people.  
  3. Extend the profile and influence of people’s voices in the decisions we make as an organisation.
  4. Build on our local connections and inspire more organisations and people to partner with us in our work. 
  5. Demonstrate where involving people has made a positive difference.

Involvement at the Health Innovation Network

At the HIN, we seek to understand, design and improve the experience of health and care for staff, service users and their families. This requires a deeper understanding of people’s experiences in order to improve things. Some examples of this include:


Need support with involving people or communities in your health and care project? Get in touch with the team

Improving Diabetes Care in Inpatient Mental Health Settings

Diabetes is two to three times more common among those with serious mental illness than in the general population, which is why improving diabetes care across Mental Health Trusts is a priority. 

Until recently Acute Trusts have been auditing diabetes inpatient care using the National Diabetes Inpatient Audit (NaDIA), in order to assess local practice, identify best practice and recognise improvements. However, despite the prevalence of diabetes among those living with serious mental illness, diabetes inpatient care is not currently audited within mental health inpatient settings. 

Following a test pilot in Southern Healthcare NHS Foundation Trust (2017) and South London and Maudsley NHS Foundation Trust (SLaM) (2014), the London Physical Health Leads Network created an audit to assess diabetes inpatient care across all London NHS Mental Health Trusts. 

The London Physical Health Leads Network is a partnership between the HIN, UCLPartners (UCLP) and King’s Health Partners (KHP) Mind and Body Programme.

A friendly smiling nurse talking to a patient who is in a hospital bed.

The audit found: 

  • Eight out of nine Trusts do not have access to their own diabetes specialist resource.   
  • Appetite among staff for more diabetes education for both staff and patients.  
  • All Trusts need to ensure existing diabetes policies are fully implemented. 
  • Trusts could do more to reduce errors, harms and identify additional health conditions that require medical attention.  
  • Patient satisfaction was 3.63 out of five, however more can be done to improve patient centred care, especially in diabetes. 

Findings have already been shared with the nine London NHS Mental Health Trusts, and many are already taking action to improve diabetes care including: 

  • Launching a weekly physical health forum to discuss improvements eg management of hypoglycaemia. 
  • Secured funding to introduce diabetes training for staff and patients. 
  • Recruitment of staff to undertake Quality Improvement projects based on various outcomes from the audit. 

“Good healthcare can significantly improve outcomes for people with diabetes, yet those with serious mental illness are more likely to miss out on this care. Despite great local initiatives there is no accepted standard for care of mental health inpatients who have diabetes. The London Physical Health Leads Network believes that this needs to change and we are delighted to present this audit as the first step.”

Dr Ed Beveridge, Dr Kate Corlett – Co-chairs, Pan-London Physical Health Leads’ Network

Report Summary

Improving the diabetes care of people with serious mental illness (SMI) is a priority for the London Physical Health Leads Network, a network hosted by UCLP, the HIN, KHP Mind and Body Programme and the Physical Health Leads from across the nine London NHS Mental Health Trusts. 

In comparison to acute inpatient settings that have had the benefit of the national diabetes inpatient audit (NaDIA) tool, there is currently no standard national audit for diabetes care in mental health settings. Following a test pilot in Southern Healthcare NHS Foundation Trust and SLaM, the HIN collaborated with SLaM, KCH and the London Diabetes Clinical Network to create an audit, based on the NaDIA, to assess diabetes care in inpatient mental health settings. 

The newly created audit was piloted on seven inpatient wards at SLaM. The audit findings were then analysed and retested to inform adjustments to the template before it was rolled out the remaining eight London NHS Mental Health Trusts completing the audit. 

A wide range of inpatient clinical wards were represented in the audit, including:  

  • Acute Adult Ward (Mixed)
  • Forensic 
  • Acute Adult (Male)
  • Older Adult  
  • Mixed Psychiatric Intensive Care Unit (PICU) 
  • Acute Adult (Female)  
  • Rehabilitation  
  • Female PICU 
  • Children and Young Person 
  • Male PICU  
  • Forensic (Female)  
  • Triage  
  • Learning Disability  
  • Perinatal
  • Participating patients who stated they were involved in their diabetes care during their stay

    66 %

  • Wards with a self-management policy for diabetes

    17 /28

  • Patient satisfaction

    3.63 /5

The report makes 23 recommendations

  • Integrated Care Systems (ICSs) / Trusts to consider:
    • The provision of diabetes specialist roles for mental health inpatient settings; 
    • How to ensure diabetes specialist pharmacists form part of the Mental Health Trust pharmacy teams, educating ward staff to support safe insulin usage.
    • Mental Health Trusts to communicate with their wards: 
    • Who their Physical Health Champion is, their role and how to contact them;
    • How to access diabetes specialist clinicians;
    • What out of hours services are available and how to access them;
    • How to contact diabetic emergency services. 
  • Mental Health Trusts to consider: 
    • Types of education they currently offer to staff, patients and carers;  
    • Provision of training in various languages and inclusion of cultural variances to ensure every population is included; 
    • Ensuring patient education is holistic; 
    • Introducing the Diabetes Know Your Risk Tool to wards that do not currently screen for diabetes on admission or consider alternative systems to flag if a patient has a diabetes diagnosis on admission; 
    • Offering patients the option to be involved in their diabetes care during their inpatient stay; 
    • Ensuring appropriate information to support self-management is available for inpatients; 
    • Having a diabetes self-management policy which is communicated with all wards; 
    • Seeking dietician support for wards that are not currently working with a specialist or non-specialist dietician;
    • Providing patients with the opportunity to give weekly feedback on their meals; 
    • Where Trusts do not have access to care plans for patients with diabetes, consider liaising with the wider system to understand if this is available for them or creating a shared care platform; 
    • Ensuring multidisciplinary team members understand if a patient with diabetes has a care plan and how to access it;
    • Having an effective electronic patient prescribing system for detecting, recording, and avoiding errors in insulin and oral hypoglycaemic agent (OHA) prescribing errors;
    • Ensuring Web-linked blood glucose and ketone meters are actively used to alert diabetes specialists across the Mental Health Trusts and at ward level;
    • Accelerating the roll out of digital systems and associated apps to support patients living with diabetes; 
    • Introducing a risk scoring system for all hospital admissions; 
    • How each ward accesses diabetes specialists, Multidisciplinary Diabetes Foot Teams (MDFTs) and Tissue Viability Nurses;
    • Using the Malnutrition Universal Screening Tool (MUST) and reviewing MUST scores weekly as advised.

A co-designed approach to scoping and evaluating the digital health technology getUBetter

Project overview

getUBetter provides digital self-management for individuals with musculoskeletal (MSK) conditions.

During 2019, the HIN led work to map the getUBetter app against the NICE evidence framework for Digital Health Technologies. Following this, an evaluation was scoped and conducted between 2019 and 2021 the HIN worked with a range of partners to explore the effectiveness of getUBetter.

We summarise the key findings including how easy people found getUBetter to use and the impact it had on the treatment for their condition.

A collaborative approach to real-world evaluation

Co-production with stakeholders has been a core principle throughout the evaluation with getUBetter. The HIN led a collaborative partnership to scope, design and deliver the digital health technology (DHT) evaluation, working with getUBetter, St George’s University Hospitals NHS Foundation Trust, the University of West of England, Wandsworth Clinical Commissioning Group (CCG) patient and public involvement (PPI) lead and Digital Health.London (DH.L). A novel aspect has been operationalising the NICE Evidence Standards Framework for DHTs so that these underpin the evaluation.

The first phase was to develop an approach that allowed us to use the standards framework to map the existing evidence-base for getUBetter against each tier. The outputs from the mapping were presented and validated at a stakeholder workshop with specialists in MSK conditions and digital evidence generation. This group then worked together to design an evaluation to ensure it addressed evidence gaps that aligned with the requirements set out in the evidence standards framework (ie behaviour change techniques and effectiveness). Colleagues at the University of the West of England undertook work to develop the evidence-base around behaviour change techniques and the HIN worked in partnership with getUBetter and provider organisations to evaluate aspects of effectiveness.

The evaluation plan

A detailed mapping exercise determined the getUBetter app met evidence standards for Tier A, B and C DHT.

These corresponded to previously named tiers 1, 2, 3a and 3b.

  • Tier 1 (System Impact) evidence for effectiveness standards: met
  • Tier 2 (Understanding and Communicating) evidence for effectiveness standards: met
  • Tier 3a (Interventions) evidence for effectiveness standards – use of appropriate behaviour change techniques: met (best practice standard)
  • Tier 3b (Interventions) evidence for effectiveness standards – demonstrating effectiveness: partially met (minimum standard)

Caption: DHTs classified by function and stratified into evidence tiers (source: NICE evidence standards framework for digital health technologies [1])

A mixed-methods evaluation was co-produced involving getUBetter, Wandsworth Clinical Commissioning Group (CCG), St George’s University Hospitals NHS Foundation Trust, DH.L, the University of West of England, and the HIN.

The aim was to explore several aspects of the ‘demonstrating effectiveness’ category for condition-related outcomes, behaviour change outcomes, user satisfaction and health utilisation. Due to the ongoing Covid-19 pandemic, the evaluation was re-scoped to ensure activities could be completed within the Small Business Research Initiative (SBRI) programme funding timeline in 2021. The revised evaluation approach involved:

  • An online survey sent to getUBetter users to capture respondents’ demographic profile and app usage; experiences and satisfaction; condition-related outcomes; and changes in self-management and understanding of their condition.
  • An online survey of clinicians to explore awareness, use and value of getUBetter.
  • Health utilisation analysis to determine resource use from primary care data comparing patients with lower back pain with non-users in a sample of 10 GP practices.

Key findings

Health utilisation

Health utilisation analysis found that 835 patients were prescribed getUBetter for lower back pain, 50 per cent of whom activated their account. Compared to non-users, getUBetter users required four times fewer GP appointments, 20 per cent fewer physiotherapy referrals and over 50 per cent fewer prescriptions.

Patient survey findings

  • 80 per cent of patients had not used a health app before

    80 %

  • Three quarters of patient respondents rated the app as ‘very good’, ‘good’, or ‘acceptable’.

    75 %

  • 55 per cent of patients reported using the getUBetter app in the past week

    55 %

Most liked aspects of the app as reported by patients

  • Easy to use the app
  • Helps me develop skills to manage my injury/condition
  • Provides relevant information according to my stage of recovery
  • It gives me reassurance

It was easy to register on getUBetter (given the apps needs information to ensure I get the right advice and to keep me safe; n=151)

Caption: Patient respondents reported it was easy to register on the getUBetter app

the app is a good reminder of what a healthcare professional has said in consultation when there is little time and a lot of information to digest’

getUBetter user

Patient respondents reported that during Covid-19, the app provided a good alternative to help manage their condition. When patients were not able to get face-to-face appointments or physiotherapy, they were happy to use the getUbetter app. Patients appreciated being able to recover independently without having to see a healthcare professional.

Impact of using getUBetter (n~159)

Caption: The majority of patients reported some benefit of using the getUBetter app.

Age group of respondents (n=204)

Caption: Adults across different age groups responded to the survey and reported the app easy to use

How often have you used the getUBetter app?

Overall rating of the getUBetter app

Caption: Despite most of the sample identifying as ‘white’ ethnicity, when comparing usage of the getUBetter app, there were small differences between ethnic groups. However, when comparing the overall rating of the getUBetter between ethnic groups, respondent ratings were very similar and positive across all groups.

Clinician survey findings

  • Most clinicians reported making referrals to the app

    79 %

  • Most clinicians thought that the app supported patients with MSK conditions to self-manage

    90 %

Outputs and contacts

An abstract was accepted for the Chartered Physiotherapy Society’s virtual conference 2021 which summarises the approach and results of the evaluation. 

If you would like to learn more about the evaluation or getUBetter, please contact the team:

Digitally supported micro-volunteering – a report of an evaluation

Part One: Introduction

In August 2020, NHSx (in partnership with NHS England and NHS Improvement and the Ministry of Housing Communities and Local Government) asked the Health Innovation Network (HIN) to undertake an evaluation to better understand digitally supported micro-volunteering models operating in the field of health and social care. This report presents learning from the evaluation and is aimed at an audience of commissioners and policy makers to inform their strategies around micro-volunteering.

Background and context

Micro-volunteering is a form of volunteering that comprises short and discrete activities, that can be easily accessed and completed by volunteers in a way that is informal and convenient – usually via digital platforms1. These characteristics distinguish it from traditional volunteering which typically involves the volunteer committing a regular block of time, over a longer period of months or even years. Micro-volunteering is a relatively new approach to volunteering2. A 2019 survey by the National Council for Voluntary Organisations (NCVO) found that 23% of people exclusively volunteer as part of a one-off activity or dip in and out of activities3.

It has been suggested that micro-volunteering has the potential to increase volunteering activity, engage more volunteers, increase volunteer inclusivity, and provide a gateway into other volunteering roles. Consequently, it could increase capacity and meet the needs of a greater number of recipients. Emerging technology and societal changes, such as patterns of working, attitudes towards volunteering, and levels of community engagement, has increased demand for micro-volunteering, and there is growing recognition of its benefits4.

From March 2020, the coronavirus pandemic created severe disruption which interrupted the usual service delivery to broad sections of the population who require support with daily living. As large numbers of people were required to self-isolate due to symptoms or exposure to those with symptoms, and those most vulnerable to infection forced to shield, the pandemic created a greater need for support services, whilst concurrently constricting formal and informal networks through which those needs would usually be met5. The ELSA COVID-19 Sub-study conducted in June/July 2020 provides useful data around these patterns in people aged 50 and over who volunteer and/or provide care 6. The study found that of caregivers who looked after anyone once a week or more, inside or outside their household prior to the coronavirus outbreak, 35% either decreased or stopped the amount of care provided. It also found that almost 61% of those who had volunteered prior to the pandemic said that they either reduced (18%) or stopped (43%) taking part in voluntary work, with only 9% increasing their level of engagement, with the reduction most pronounced in those aged 70 or older.

The response to the COVID-19 pandemic through initiatives such as TechForce19 and the NHS Volunteer Responder scheme led to increased interest in the potential value of micro-volunteering across health and social care. In response to these opportunities, new products supporting micro-volunteering have been introduced to the market. Suppliers have developed micro-volunteering platforms that operate different models. Some are ‘pull-based’ models where tasks are pulled by volunteers from browsing available opportunities; whereas others are ‘push-based’ models where tasks are pushed to the ‘best match’ volunteer to accept or decline.

Evaluation methods

The evaluation took a mixed methods approach gathering quantitative and qualitative data. It focuses on five platforms as case studies, exploring two in detail: the GoodSAM app which was integral to the NHS Volunteer Responders (NHSVR) programme and Team Kinetic; and three in less depth: Be My Eyes, Nyby and Tribe. Platform selection was informed by a rapid market review undertaken in August-September 2020.

This report draws on the findings from data gathered from multiple sources for the evaluation between October 2020 and February 2021:

  • Interviews with representatives from the five case study platform providers and their clients/commissioners
  • Interviews with NHSVR (n=17) and Team Kinetic (n=13) volunteers 7
  • Surveys of NHSVR (n=12,056) and Team Kinetic (n=144) volunteers8
  • NHSVR and Team Kinetic platform data about volunteer activity

Part Two: Description of the platforms, their development and implementation

Five organisations supplying a digital platform that supports micro-volunteering in the field of health and social care were selected as case studies for the evaluation. The five platforms share common features, but also have unique distinguishing features which led to their selection as case studies during the scoping phase.

Platform core features

The five models all allow discrete, one-off task-based volunteering activities that put the volunteer directly in contact with the individual recipient to provide support for needs related to their health and social wellbeing. Table 1 provides a summary of the core features of each micro-volunteering model.*

  • GoodSAM** was commissioned by NHS England and NHS Improvement to adapt its existing Emergency Responder technology to deliver the NHS Volunteer Responders (NHSVR) programme as a national COVID–19 pandemic response (https://nhsvolunteerresponders.org.uk/). The NHSVR programme was designed to provide a safety net to meet community needs in areas where voluntary sector infrastructure was inadequate to meet demand during the pandemic. It is commissioned by NHS England and NHS Improvement and delivered by Royal Voluntary Service (volunteer management) and GoodSAM (platform provider). Volunteers currently deliver seven roles: shopping for food and essentials and collecting and delivering prescriptions for someone who is isolating or shielding (Community Response and Community Response Plus), telephone support (Check in and Chat and Check in and Chat Plus), Patient Transport, NHS Transport and COVID vaccination centre stewards.
  • Team Kinetic (https://teamkinetic.co.uk/) is a software development company offering volunteer management services, originally as a commission by Manchester local authority to meet the volunteer needs of the 2012 Olympics. The micro-volunteering functionality was developed to support their volunteer organisation clients changing needs in responding to the COVID-19 pandemic. Team Kinetic worked in partnership with existing clients to develop a ‘community task’ feature to facilitate micro-volunteering activities. The product development was also supported by the TechForce19 innovation grant. Volunteers deliver four categories of activities:  collecting shopping and prescriptions, making wellbeing telephone calls, acting as a chaperone, and ‘other’ (befriending, technical support with setting up IT and undertaking odd jobs).
  • Be My Eyes (https://www.bemyeyes.com/) is a video call service supporting people with visual impairment with everyday tasks such as reading labels when shopping or cooking or choosing the right clothes for work. The app connects volunteers with people needing support, allowing requests for help to be met within seconds. People with a sight impairment register their request for support on the app and the notification is then pushed out to volunteers. A direct video contact is then established between the person requesting support and the first volunteer to accept the support request undertakes the task. As well as this ‘first volunteer’ type of task, the app also enables people to request ‘specialised support’ that links them to organisations, such as the RNIB.
  • Nyby (https://Nyby.com/about-Nyby) is a platform that facilitates task sharing across the health and care sector. Nyby enables professionals in the sector to obtain support from volunteers and other health and care personnel in meeting the needs of clients that would otherwise go unmet. Staff post requests for support via the platform and these are picked up by volunteers or, where relevant, other personnel. Volunteers, who are qualified by the organisation they belong to, undertake activities such as running errands, providing practical assistance (e.g., changing light bulbs), acting as medical escorts, and helping clients to exercise and socialise. Volunteers can register to offer specific roles and recruitment campaigns can be created for specific target groups; they are sourced via voluntary organisations who are using the platform and as individuals unattached to any particular organisation. Nyby is a Cloud based Software as a Service (SaaS) platform based on peer-to-peer technologies that match needs and resources through digital platforms.  A Norwegian initiative, Nyby is currently developing its first UK site. The platform was created through forming research and development partnerships to identify and then address fragmentation in public service provision. The company additionally supports partners in identifying service gaps that can be closed by connecting local authorities, health services, volunteers and the third sector to match resources and services using digital technology.
  • Tribe (https://tribeproject.org/provider/) is a digital platform that connects people with a wide range of local support, including volunteers, community groups and approved paid support providers. Tribe enables volunteers to support people in their local community socially through chats as well as with practical tasks, including shopping and collecting prescriptions. Tribe aims to work in partnership with volunteering organisations to mobilise and upskill volunteers via digital training in order to tackle gaps in provision – ‘care dark patches’. Unmet community support needs are identified by mapping data from multiple sources using artificial intelligence and machine learning. The platform is now also being used for social prescribing to map community service provision. Tribe was selected as one of UKRI’s Healthy Ageing Trailblazers, as part of this the project will receive significant funding to further develop the paid  ‘home care’ support functionality.

Notes

*The core features table (Table 1) is specifically focused on the use of GoodSAM in relation to the NHSVR app and does not mention GoodSAM functionality that was not built into the NHSVR app. GoodSAM built the NHSVR platform to NHSE specification and GoodSAM has other functionality that was not incorporated eg an inbuilt video system, a rewards system, and a feedback and a notes system.

**Throughout the report, the GoodSAM/Royal Voluntary Service platform is referred to as NHSVR to reflect the focus specifically on the way that GoodSAM facilitated that specific NHS programme in partnership with RVS.

Implementation

The geographical scale and boundaries of the models vary between (inter)national and local communities.

  • • Be My Eyes largely works outside of geographical boundaries – volunteers can support recipients located anywhere in the world.
  • • NHSVR is a national programme coordinated in partnership between NHS England, Royal Voluntary Service and GoodSAM. Demand for support is directly matched with volunteer supply, at a local level, apart from the ‘Check in and Chat’ function which was revised to match recipients with volunteers living in any area. Initially referrals could be made by any front-line provider with an NHS or local authority email, but the referrer set-up broadened as the scheme developed to include Social Prescribing Link Workers, VCSE organisations, MPs, Police, Fire Service, Community Pharmacy, NHS 111, and Ambulance Service amongst others. Some local authorities have built it into their triage system as one of the potential referral routes.
  • NHSE and RVS have worked with referring organisations to help ensure the programme supports and remains relevant to local needs.
  • • Team Kinetic, Tribe and Nyby support models that operate at a very local level, through community-based voluntary groups, community partnership and local authorities/municipalities. The technology is licensed to a local organisation as a client with support provided by the company i.e. as a licensed and supported software application. Therefore, the client and local partners need to implement and operate the technology as part of their local volunteering model or pathway. For example, Team Kinetic work with their clients to tailor the technology and support local implementation, but it is the client organisations that use the system to manage local volunteer activities, including managing on-boarding the volunteers, verifying ID checks, and inputting volunteer requests.

A co-production approach is at the core of how Nyby and Tribe implement their models. This involves working with local community groups to map local need and tailor the technology based on local contextual factors. Nyby work with local communities to map local needs and only expand based on pre-defined success criteria. Local partners working with Nyby often appoint a Project Manager who works closely with a Nyby Solution Specialist to ensure that any necessary training is completed and there is a rigorous implementation and roll-out plan. Nyby also enables and promotes experience sharing across its 50 government and charity partners across Norway, Sweden, Denmark, Germany and soon, the UK. Tribe work with local stakeholders to use local data to develop a ‘community needs matrix’ displaying projected need versus current provision. Tribe expect a minimum of a two-year commitment from commissioning organisations recognising the time it takes to bring new community provision online.

Part Three: Learning from volunteers about facilitating micro-volunteering using digital platforms

This section of the report explores the learning from data about the activity, experiences and perceptions of volunteers with the NHSVR and Team Kinetic platforms. It draws on platform system data, and feedback from volunteers via surveys and interviews.

Volunteer activity with the micro-volunteering platforms

There is considerable appetite for volunteering with digital platforms that support micro-volunteering.

Data extracted from the NHSVR and TK platforms (Table 2) shows that up to January 2021 just under 800,000 people had registered with the two platforms, from the point early in the pandemic (March/April 2020) when the micro-volunteering platforms were launched.

Activity unitNHSVR9Team Kinetic10
Approved volunteers647,405155,322
Volunteers who put themselves ‘on duty’397,940 
Created tasks1,766,2104,710
Completed tasks1,446,6814,615
% of tasks completed81.9%98.0%
Avg. monthly completed tasks[11]144,981506
Table 2 Summary of platform activity to January 2021

Volunteers’ motivation for signing up with the platforms needs to be seen in the context of the COVID-19 pandemic

As shown in Figure 1, the main reasons reported by NHSVR and TK survey respondents for registering to volunteer with the platforms were related to a desire to help during the COVID-19 pandemic. Responses to this question need to be understood in the context of the platforms’ development. The NHSVR and Team Kinetic platforms were both developed specifically as a solution to problems created by the COVID-19 pandemic. The NHSVR programme recruited volunteers through a very prominent national media campaign with messaging around creating an ‘army’ of NHS volunteers to support the NHS through a crisis. In contrast, Team Kinetic worked with local organisations to develop locally relevant responses to mobilise volunteers to provide support during the crisis.

Figure 1 Top seven motivations to register, split by platform (n=11,904)

Qualitative data from interviews with NHSVR and TK volunteers provides additional insights. Most NHSVR interviewees first heard about the initiative from the national media campaign. In contrast, recruitment to the TK platform was very much implemented at a local level. Kenilworth interviewees received an invitation to sign up to Team Kinetic from the local Covid-19 Facebook group they joined early in the pandemic. Cardiff and St Helens interviewees responded to adverts in their local papers, Facebook and flyers posted in public settings, and to information received from the local volunteer centre. One interviewee had first used the Team Kinetic platform in 2012 when it was rolled out for volunteers attending sporting events to replace communication with the volunteer force by email, though she had not used the app previously.

In addition to wanting to help out in the crisis, being in a position to help was a key theme in interviewees’ motivations. Interviewees talked of having more time for a range of reasons related to activities being restricted during the pandemic. Decreased work commitments were mentioned frequently, including working from home, and other volunteering work being paused or moving online. Interviewees also reported feeling they had relevant skills to help.

Platforms that facilitate micro-volunteering have the potential to provide a significant level of support during a crisis.

Whilst not all those who registered with the NHSVR and TK platforms were approved to volunteer or went on to download the apps and then complete tasks, the platform data indicates that over 100,000 individuals carried out over 1.5 million tasks between March/April 2020 and January 2021 (Table 2). The majority of these tasks were either delivery of shopping, prescriptions, and other essentials or telephone support (Figure 2 and Figure 3).

Figure 2 NHSVR tasks by category
Figure 3 Team Kinetic task by category

Digital platforms that support micro-volunteering have the potential to engage a broad demographic

As illustrated in Figure 4, NHSVR and TK platform data shows that around 80% of registered volunteers were of working age (20 to 59).

Figure 4 Volunteer age by platform

69% (268) of Team Kinetic volunteers were female and 31% (123) were male. No other platform data was available on volunteer demographics, but data from the NHSVR and Team Kinetic volunteer surveys shows: 64% of respondents were female; 6% were from an ethnic minority community (EMC) group (indicating an ethnic group other than ‘White UK’); 63% stated a religion; heterosexual and 4% identified their sexuality as LGBT+ (as opposed to heterosexual). As shown in Figure 5, 25% of respondents were working full time and another 16% were working part time; 9% were furloughed and 5% were unemployed.

Figure 5 Work status of volunteers (n=10,640)

The NHSVR programme recruited volunteers through a very prominent national media campaign with messaging around creating an ‘army’ of NHS volunteers to support the NHS through a crisis. The messaging may have attracted a younger cohort of volunteers than the TK micro-volunteering platforms with their very local focus.

Digital platforms that support micro-volunteering have the potential to engage people who have not previously volunteered.

As illustrated in Figure 6, the NHSVR and Team Kinetic volunteer surveys found that around a quarter of respondents who were working or furloughed had never volunteered before. A similar pattern was seen in the qualitative interviews with volunteers from the two platforms. Interviewees who had not volunteered in the past were asked why and their reasons included not knowing how and a lack of time when working full time was the main reason. The micro-volunteering apps addressed these issues because people were able to find and complete tasks at the time allocated to volunteer.

Figure 6 Percentage of respondents who had or had not volunteered before, split by occupation (n=10,481)

In addition to quantitative data from surveys of NHSVR and Team Kinetic volunteers, rich material from interviews with volunteers from those platforms help us understand the way in which micro-volunteering engages people – both those who would not traditionally volunteer, as well as those who are already active volunteers. Table 3 compares what we learned from NHSVR and TK volunteers with the findings from the 2019 ‘Time Well Spent’ national survey on volunteer experience.

Digital platforms that support micro-volunteering offer volunteering activities that are complimentary to those offered by more traditional forms

Asked how their previous experience of volunteering compared to experience with the platform, interviewees said it was difficult to compare them. For example, one said it was a different type of volunteering in that her governor roles are regimented by attending meetings, whereas the app allowed unplanned support to individual needs. Another said that compared to her trustee and teaching voluntary work, the difference is that she can choose to do one off activities. There was recognition of the specific context in which the micro-volunteering platforms were operating: the situation was different, and the app worked well in organising people and getting them mobilised to help out in the crisis.

Interviewees saw advantages and disadvantages of micro-volunteering compared to their more formal volunteering activities. They described how although they liked the freedom of not making a commitment offered by the platform, they preferred their other volunteering work as it offered routine and certainty. However, the also talked of the benefits these features brought in terms of planning activity around other commitments. It was suggested that the more formalised commitments associated with traditional forms of volunteering guarded against the experience through the platforms of offering help but not being called upon. One volunteer also described traditional volunteering as a preference due to the wider variety of tasks usually on offer. Others contrasted the social contact and teamwork in their roles outside the platform with the absence of a team with the volunteering model offered by the platform.

In the qualitative interviews with NHSVR and Team Kinetic volunteers, those with considerable experience of traditional models of volunteering were notably more critical of various aspects of these micro-volunteering platforms. This finding is supported by evidence from the surveys as shown in Figure 7.

Figure 7 Percentage of respondents who were satisfied or dissatisfied with their experience of the micro volunteering platform, split by whether they had volunteered before (n=11,339)

Digital platforms that support micro-volunteering have the potential to engage volunteers beyond the pandemic

72% of NHSVR and Team Kinetic survey respondents indicated they would be ‘likely’ to volunteer with the platform in the following twelve months. A similar pattern was seen in the qualitative interviews. Some of those who said they would continue to volunteer with the platforms beyond the pandemic added the proviso that the amount of time they could offer might reduce, for example because of changing work commitments.

Reasons given in the interviews for continuing to volunteer with these micro-volunteering platforms included the flexibility – being able to switch the app on and off, and that it was undemanding, and fit with their availability, and met their interest in short activities involving no commitment; and the ease of using the app.

Most interviewees also said they might look for new opportunities for volunteering, outside of their activity with the platform.

Frequency of volunteering is linked to an individual’s availability

In qualitative interviews, NHSVR and TK volunteers indicated that the frequency with which they volunteered with the platforms was dependent on their availability and the ability to fit tasks in with personal circumstances (e.g., health), other commitments (particularly work – both paid and unpaid, including family care, but also education), and lifestyle (e.g.,  social and leisure pursuits). Changes in the extent of activity of volunteers with the NHSVR and TK platforms during the COVID-19 pandemic highlights how availability alters over time. The timeline graphs with activity mapped against the pandemic milestones (Figure 8 and Figure 9) shows there were more uncompleted tasks as the lockdown eased. In interviews, volunteers described how the number of tasks they undertook rose/fell over time as the demands of their work (paid and unpaid) decreased/increased. Some had reduced their volunteering activities during the summer months when COVID lockdown restrictions eased, and they were able to do more socially.

Figure 8 NHSVR volunteer activity between 30th March 2020 and 24th January 2021
Figure 9 Team Kinetic volunteer activity between 13th April 2020 and 18th January 2021

Volunteers experiences with the micro-volunteering platforms

On the whole, NHSVR and TK interviewees were positive about their experience of volunteering with their respective platforms.

A cross-cutting positive theme in the qualitative interviews with NHSVR and TK volunteers was the simplicity of the approach in general and specifically of the apps and the tasks they supported. People liked the online system and the accessibility offered by a phone-based app. In terms of the broader approach, interviewees liked its flexibility which allowed task selection to fit with availability and being able to choose tasks. Feedback from NHSVR and TK volunteers in both the surveys and interviews was broadly positive about registration and using the app to find tasks.

As shown Figure 10, the NHSVR and TK volunteer surveys indicate that 83% of respondents found the process of getting involved ‘easy and straightforward’. A similar pattern to that found in the volunteer surveys was seen in the qualitative interviews, with one NHSVR interviewee indicating it took twenty minutes to register.

Figure 10 The extent to which volunteers (dis)agreed that platform registration was easy and straightforward (n=11,730

Both NHSVR and Team Kinetic interviewees generally found the respective apps easy to use, though some had experienced difficulties initially before gaining familiarity, and/or knew of others who had been unable to use it.

Dissatisfaction was largely associated with low activity

In the qualitative interviews with NHSVR and TK volunteers, dissatisfaction was largely associated with low activity, caused by receiving no or too few alerts and Figure 11 illustrates how the survey findings support this observation. Interviewees who had completed no or few tasks reported disappointment, and feelings of having wasted time.

Figure 11 Level of (dis)satisfaction and number of tasks completed

There were variations between ethnic groups in responses to questions in the volunteer surveys which suggest that, compared to those from white ethnic groups, ethnic minority communities had particularly positive experiences 

Analysis of data from the surveys of NHSVR and TK volunteers found a statistically significant difference in responses given by respondents from ethnic minority communities (EMCs) compared to those from a white ethnic group on a number of questions.  A detailed breakdown of the difference between white and EMC responses to a set of questions about experience with the platforms is given in Figure 12.  

Additionally, 64% of EMC respondents agreed with the statement ‘I have benefited from gaining new skills and knowledge through the guidance’ compared to 45% of those from a white ethnic group. 74% of EMC respondents agreed experience with the platform ‘gives me new skills and experience’, 72% agreed ‘it gives me more confidence’, and 54% agreed ‘it improves my employment prospects’. The respective figures for white respondents were 50%, 45%, and 27%.

EMC respondents were also more likely to say they would be ‘likely’ to continue to volunteer through the platform over the next twelve months: 84% compared to 72% of respondents from a white ethnic group.

Figure 12 Respondent experiences with micro-volunteering platforms – White/Ethnic minority communities (EMC) comparison

Volunteers’ tips for implementing a micro-volunteering platform

In the qualitative interviews, NHSVR and Team Kinetic volunteers made suggestions for improvements to the platforms which are presented here.

General improvements

Volunteers indicated that ensuring the frequency of activity matched their expectations would enhance their experience of volunteering with these micro-volunteering platforms, as would minimising time between registering and approval and commencement of volunteering activities. They suggested that providing clear role descriptions at registration would help volunteers select roles, and that clear guidance around carrying out roles would be beneficial, such as arrangements for handling payment for shopping, and where to access support where needed to carry out roles. Simple mechanisms for claiming reimbursement of volunteer costs was also indicated.

Interviewees noted that being able to view locally relevant communication, as opposed to receiving blanket information, would be helpful, increase the user experience and create a team feel. It was suggested that building a volunteer network, both locally or on a wider scale, would be beneficial for building rapport among volunteers and improving peer-supported learning. The use of online forums such as Facebook were seen as a way to achieve this, with interactive training materials to support peer-learning and increasing skills. Having access to local and/or regional support networks of delivery managers was also identified as having potential benefits for the volunteer experience.

There were perceptions that both platforms could be expanded to capture a wider variety of tasks and allow tasks for individual clients to be repeated. It was suggested that notifications should be redesigned to give clearer and more localised messaging. For example, using a push model if there is little demand in one area, to notify volunteers that they may not be needed and keep people informed. Alternatively, using a pull model where specific tasks can be grouped and completed by a small number of individuals or to increase continuity.

Finally, there was a perceived need to connect to a wide source of ‘referrers’ such as community services, social services and GPs, to reducing the burden on these service providers.

Improvements to the technology

Volunteer suggestions to improve the technical aspect of the apps mainly related to the presentation of tasks. Providing additional details regarding the task, including detailed description and estimated time for completion, would enable volunteers to make a more informed choice about accepting or declining a task. Inclusion of information about the client within the alert/notification was suggested to enable the volunteer to tailor their response to the individual client e.g., information about the age of the client, if they have a hearing impairment or dementia, or having difficulties communicating in English. TK volunteers suggested grouping tasks within a small locality would help volunteers identify opportunities in their locality. Suggestions for modifications to the NHSVR alert system included changing the tone and volume of notifications and introducing the ability to restrict the number of alerts.

NHSVR volunteers felt the app reporting could be improved by allowing volunteers and clients to enter feedback on tasks completed, providing an audit trail which could be accessed by both, as well as ensuring that unnecessary alerts being issued for clients who no longer needed the service. In-built metrics such as ‘hours spent available via app’ are not as useful to volunteers who wish to track number of tasks completed for example. Availability of record of activity in a format which could be exported and shared on CV to support employment search was identified as beneficial.

There were also suggestions to improve external communication via the app. Firstly, linking the chat feature to a specific task rather than showing continuous chat data. Secondly, allowing the app to integrate with Zoom/ virtual video calling platforms for use during ‘check in and chat’ tasks which would allow for a more personal experience for both volunteers and clients. Thirdly, a mechanism to escalate a task to a help centre after several failed attempts to contact a client.

Both NHSVR and Team Kinetic volunteers suggested a need for more support regarding navigating the app for individuals who are perhaps less technologically trained. This could be achieved through tutorials or user guides within the apps themselves.

Techniques for providing rewards like virtual badges

The Team Kinetic task-app already incorporates a reward system which includes virtual badges of achievement. In contrast, the NHSVR app has no virtual reward recognition system built in. Views across volunteers were mixed in terms of the utility of virtual rewards. Both volunteer groups acknowledged that virtual rewards such as badges could be motivational for some individuals.

Team Kinetic volunteers noted having a wider variety of milestones than currently available may be useful, such as recognition when reaching a certain number of service users or incorporating a tiered system which volunteers climb as they complete tasks (e.g. bronze, silver, gold). There was also recognition that receiving an accolade in the form of virtual ‘thumbs-up’ from a volunteer coordinator had been a boost during their volunteering experience, as had receiving a thank you letter from a local mayor. NHSVR volunteers acknowledged that a reward system could be a nice addition to the current app and that a competitive element may motivate some individuals, in particular, it may be rewarding for completer-finisher type personalities. NHSVR volunteers had fewer practical ideas about what the reward system should measure, perhaps due to the fact they had not experienced this during their usage of the app.

Some volunteers across Team Kinetic and NHSVR expressed concern over the reward system stating that volunteering should not be used as a means to gain rewards, and those wanting to help would not likely be interested in such rewards. This type of system may also lead to a focus on quantity rather than quality. Despite this, it was acknowledged that a reward system could still help engagement with volunteering and for individuals wanting to use this information on their CV.

Improving opportunities for volunteers to take part in micro-volunteering

Both Team Kinetic and NHSVR volunteers noted a need for increased awareness of the micro-volunteering model. Suggestions were made to invest in marketing such as TV advertisements and local media opportunities and that volunteer-led campaigns may be beneficial in recruitment. NHSVR volunteers noted that general communications had been too corporate to date and did not focus enough of the communities being served and stated there is a need to provide regionally relevant feedback to local groups volunteering. Practical suggestions such as expanding the types of tasks available and capitalising on the local expertise could improve opportunities for volunteers and clients alike. Additionally, obtaining feedback from both volunteers and service users was mentioned as a means to improve the current system.

Team Kinetic volunteers noted a need for clearer governance structures to ensure public safety and the benefits of sharing good practice across volunteer organisations to avoid potential mistakes. Similarly, to NHSVR, Team Kinetic volunteers also suggested a way to capture and organise disparate groups during emergencies (e.g. floods) could be beneficial and potentially easy to integrate into the TK system.

Volunteer perceptions of micro-volunteering

There was consensus across interviewees from both platforms that most of the different key features of micro-volunteering were important to them

In the qualitative interviews, NHSVR and TK volunteers’ perceptions of different aspects of micro-volunteering were explored. Interviewees wanted to be able to volunteer in a way that involved ‘small actions that are clearly defined, can be completed quickly, and have a clear beginning and end’, and to be able ‘to choose an action and complete it when it is convenient’. The main reason they gave was the flexibility this provided to complete tasks within the time allowed by other commitments. There was also consensus that an approach involving ‘actions that can be completed at home or close to home’ was important, most often because of accessibility.

Views about the importance of volunteering involving ‘no commitment from the volunteer to complete the action more than once – involvement can be just a one-off or volunteers can dip in and out’ were more divergent. Whilst this brought benefits for some, once again, largely around ‘flexibility’, others saw advantages for both clients and volunteers in repeating tasks – to build trust, establish rapport and improve understanding of how the volunteer can help.

There were also diverging views around the recruitment process and training. Interviewees wanted a ‘simple process of identifying an opportunity for volunteering without a complicated recruitment process’, because it saved time which could be used to volunteer, whereas complicated processes could put people off. However, adequate governance and training were regarded as important. This suggested the need for a balance between simplicity and ensuring that the service was delivered safely, perhaps though an approach that was more tailored to the task and the volunteer.

Volunteers like the accessibility and flexibility of micro-volunteering

Volunteers like the accessibility of micro-volunteering – tasks can be easily identified and quickly completed at a convenient time. They also like the flexibility it offers – to choose the extent of commitment, over a time-limited period, in a way that fits with their lifestyle. People liked that they could decline a task, knowing that someone else would pick it up – people in need would not be left without. People like being able to choose and carry out different types of tasks offered by the platforms. Micro-volunteering was described as a good way to get volunteer experience, and a good entry point for people who did not know how to volunteer.

The micro-volunteering concept underpinning the NHSVR and Team Kinetic programmes did not suit all interviewees

Some NHSVR volunteers said they would prefer a mechanism that enables them to establish a relationship with a client over time, to improve rapport and understanding of the client’s needs and one said they would prefer to sign up for a specific shift and receive a list of shopping tasks to undertake during that shift. Team Kinetic interviewees mentioned features that were specific to the way the app was used locally that addressed these areas of dissatisfaction expressed by volunteers with the NHSVR Programme. Notably, they talked about the ‘street champion’ role with multiple tasks grouped at a street level; and being able to book to repeat tasks which could build rapport with clients.

There was a perception that micro-volunteering is a good way to mobilise people into volunteering, especially during the current crisis. However, some experienced volunteers personally preferred the more structured commitment of traditional volunteering models.

Push vs pull models of micro-volunteering suit different people at different points in time

Interviewees were asked for their views of push and pull models of micro-volunteering platforms. Responses to this question revealed some key differences between the NHSVR and Team Kinetic platforms.

NHSVR interviewees agreed that the platform was a ‘push’ model of micro-volunteering. Their perceptions of the ‘pull’ model in comparison to their experience of working with the ‘push’ model were mixed. There was, however, a clear preference for the ‘push’ model amongst most interviewees at the current time: either in the short term because it suited their current circumstances, particularly work commitments, or in the longer term because it suited their attitudes to volunteering. NHSVR interviewees indicated they, and others, would have volunteered less if they had to actively search for opportunities, that the ‘push’ model made volunteering easier, and that people are more willing to help if asked. Just four people said the pull model would work better for them at present, including two who reiterated points made throughout the interview that they preferred to develop a relationship with a recipient over time.

Team Kinetic volunteers commonly thought that the platform involved both pull and push approaches. ‘Pull’ in that they could search for opportunities directly on the app. ‘Push’ in that delivery organisations sometimes sent them notifications outside of the app – by text, email, WhatsApp or from the Facebook group – that tasks were listed on the app for completion. Mixed views were expressed about preferences for ‘pull’ or ‘push’ models of micro-volunteering. Largely people liked the model they experienced, including those who liked the mix of the two approaches. One interviewee said that they liked receiving notifications, another said it would be helpful to receive notification that jobs are available by phone, as a reminder to look at the app, particularly when they returned to work full time.

Part Four: Sustainability

Supporting and promoting volunteer capacity

There is some concern amongst platform providers and their clients about volunteer fatigue and a consequent perceived need to build the voluntary sector infrastructure and continue to raise the profile of volunteering. However, the various platforms were seen as a good way to promote new models for volunteering and expand and sustain volunteering capacity. This was also a strong theme in the interviews with volunteers, many of whom pointed to the need to increase public awareness of the opportunities presented by micro-volunteering platforms. Across the board, volunteers highlighted how micro-volunteering has huge potential to support local communities and health economies in a number of ways, and that this has been largely due to a cultural shift observed since the pandemic.

The NHSVR and Team Kinetic volunteers interviewed particularly liked the flexibility and simplicity of the approach in general, and specifically the app. They saw both platforms as a way into volunteering for those without previous experience. Similarly, Be My Eyes reported volunteers liked the flexibility and simplicity of app, which leads to high retention and the sustainability of the model.

For Nyby and Tribe, the underlying rationale for their model of volunteering is to build and sustain volunteer and community capacity to address local need. Their approach uses co-production to embed a locally tailored model of volunteering within community partnerships by harnessing the power of technology and community action. Team Kinetic was used by local voluntary sector organisations and volunteers described some mechanisms that supported community development, such as the ‘street champion’ role, and local co-ordinators. There was a theme in interviews with NHSVR volunteers however, that the platform lacked sustainability because it was not embedded within existing local voluntary sector infrastructure, and therefore failed to develop social capital. Interviewees suggested this could be addressed creating local or regional structures, including mechanisms for teamwork and expert and peer support.

Volunteer passports

Platform providers and their clients highlighted the role digital platforms could play in expanding the development and roll out of volunteer passports. For example, if a volunteer registers with a platform, completes ID and DBS checks, this could potentially simplify and expedite the process of them registering and volunteering via another voluntary organisation/platform. In addition, it could provide volunteers with a digital ‘CV’ of their volunteering skills and experience.

Variation in model implementation

The flexibility in how the model and underpinning technology are implemented is an important factor in determining sustainability, because it allows clients and users to tailor the approach into local settings and ways of working (e.g.,  systems, processes, practices). Preventing the adaptation of a technology to local contextual factors is known to result in implementation failure[1]. However, local variation in how the model is implemented may result in the model being used less effectively or optimally. For example, there could be issues when platforms were seen as an adjunct to, rather than an integrated component of, the local volunteering pathway. This could be due to local organisations being unwilling or unable to change internal systems and process to achieve better integration. Examples of not fully utilising the platforms included, only putting a sub-set of pre-existing volunteering activity onto the system rather than using it to recruit, register and manage new volunteers; and using process to advertise tasks to volunteers outside of the platform (such as through a direct email) rather than using functionality within the system to alert volunteers to opportunities. It is important here to recognise that two of the platforms were developed specifically as a response to the COVID-19 pandemic is response context and that this has determined the way they have evolved. It is clear that these platforms will need to adapt to be relevant as a way of supporting micro-volunteering outside of an emergency.

Standards for micro-volunteering

There was a perceived place for standards in terms of increasing the confidence of commissioners regarding the quality of provision. Tribe are working with TSA (https://www.tsa-voice.org.uk/) as part of a steering group for digital care standards and are participating in Helpforce work on standards in volunteering (https://helpforce.community/about). However, BME expressed concerns that standards would introduce complexity in the system which would detract from the benefits of simplicity offered in their app. GoodSAM, the providers of the technology supporting the NHSVR model, expressed a similar note of caution regarding the responsibility of organisations in terms of supporting volunteers and enabling


Part Five: Conclusions and Recommendations

This evaluation provided good evidence that micro-volunteering works as a way of engaging a willing volunteer force in meeting unmet community need. The micro-volunteering platforms engaged very high numbers of volunteers during the COVID-19 pandemic.

The platforms were not necessarily able to capitalise on the willing volunteer force that stepped forward and expressed an interest. There was clearly a very large number of people who saw their willingness convert into no activity at all, and another large group who  undertook very little activity. This is potentially a missed opportunity to build volunteer capacity. Low activity was the feature most frequently associated with dissatisfaction amongst volunteers. Despite this, the evidence indicates this group are willing to engage with the micro-volunteering platforms in the future. Action should be taken as a matter of urgency to ensure that this ‘low activity’ group are engaged, and that their disappointing experience does not lead to them being lost to volunteering in the longer term.

The micro-volunteering platforms were good at engaging people who traditionally are less likely to volunteer – particularly those of working age. The combination of platform accessibility (especially the ease of using the app, the simplicity of the tasks and the flexibility of carrying out those tasks around other commitments), and changed personal circumstances during the pandemic (especially having more time because of reduced demands of work and/or restrictions on leisure opportunities) created the conditions for people to take on volunteering work – both those who were already very active volunteers, those who did a bit and those who were not volunteering prior to the pandemic. Volunteering strategies should take advantage of the opportunities for extending the pool of volunteers micro-volunteering offers.

In the conditions of a crisis like the COVID-19 pandemic, micro-volunteering platforms can act as a catalyst to engage people in additional voluntary work – including those who would not otherwise have volunteered. People learn that volunteering brings rewards – helping others, making a difference, learning new skills, all makes you feel good. They also learn that volunteering can be fitted in around work, family life and leisure. Volunteering strategies need to take account of these findings by communicating messages to the public about the opportunities offered by micro-volunteering that are clear and in a way that engages them.

Outside of the pandemic, effective messaging strategies could include clear articulation of the nature of the ask, such as the problem requiring their assistance, the nature of the commitment from the volunteer, and the rewards volunteering can bring. 

Some people may be more motivated by meeting people and making new friends, others may be more interested in learning new skills that might be useful in their employment search. People who work and perceive lack of time as a barrier may be attracted by messages that micro-volunteering can be very quick and easy. Evidence from this evaluation suggests the messages will most effectively be tailored to suit specific segments of the population.

The types of tasks offered by micro-volunteering platforms could usefully be extended – both to reach a wider potential pool of volunteers – engage them and use that as a catalyst to increase their engagement. 

There is also evidence that different segments of the population are interested in different types of activities. For example, from the data available more men than women selected roles which focused on driving, so increasing opportunities for these types of activities may better engage them.

The Be My Eyes platform could be regarded as an archetypal micro-volunteering model – an ultimately simple way of connecting volunteers with those who need their support. The approach could offer solutions to other providers as a way of extending reach of their apps to both service users and volunteers, and thus enhancing sustainability.   

As demonstrated by the success of Be My Eyes, global infrastructure – both technology and community – can deliver highly effective solutions at the micro-level. Strategies for micro-volunteering could usefully draw on these lessons, including enabling agile solutions that can incorporate technological developments, and build on the possibilities offered by technologies such as 5G.

Interviews with volunteers also highlight that micro-volunteering does not work for all. Therefore, it needs to sit within a comprehensive package of opportunities that encompass a spectrum from archetypal micro-volunteering models such as Be My Eyes to very formal, traditional ways of volunteering, and a range of approaches in between.

The longer-term sustainability of national platforms supporting micro-volunteering could be enhanced by creating local or regional structures, including mechanisms for teamwork and expert and peer support.

NHSVR volunteers suggested expanding the app to capture a wider variety of tasks and allowing tasks for individual clients to be repeated. Feedback suggested that this may be happening informally outside of the app. Allowing this information to be captured and logged could be used to improve the reporting and increase impact of the volunteer programme as a whole.

Microvolunteering report

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Remote Consultations in Mental Health: Learning from Evaluation Report

Introduction

COVID-19 turbo-charged the use of remote consultations in mental health, with many services having to switch to video or telephone appointments almost overnight. But what has this meant for service users and staff, and what lessons can we take for the future?

This report, published jointly with south London mental health providers, local system partners, academics and service users examines the evidence on the impact of the shift to remote consultations, shares learning and provides recommendations for future practice. This work is ongoing so please check back to the Remote consultations in Mental health resource page for updates and the latest published papers.

Executive Summary

Remote Consultations in Mental health – Learning from Evaluation Executive Summary


COVID-19 has meant significant changes in how mental health services have been delivered. Appointments that would normally have taken place face-to-face have had to be moved to video or telephone consultations.

These changes are likely to have had an impact on all the people involved in mental health care – from service users to clinicians and other mental health professionals. There may have been positive and negative effects, or unexpected consequences. Currently, however, there has been no comprehensive evaluation of these effects.

This project is led by the three south London NHS Mental Health Trusts, working in conjunction with service users and academia to develop the evidence base in this area and form a learning healthcare system.

Through conducting a robust evaluation of the current evidence and identifying any potential gaps, the project aims to guide ongoing research, disseminate best practice, and inform the delivery of services now and in the future.

This report details phase one of this project with the thematic analysis of the findings from the three workstreams- systematic evidence reviews; a synthesis of patient, carer and staff surveys and a survey of ongoing evaluations.

Foreword

The new coronavirus SARS-CoV2 was first identified in late 2019 with the first cases of COVID-19 infection reported in the United Kingdom at the end of January 2020.  From mid-March 2020 onwards, social distancing measures were introduced to reduce the spread of the virus and health services rapidly increased their adoption of remote consultations. This included inter-professional, service user and carer facing interactions using the internet, telephone, video conferencing and text messaging. Video conferencing software called ‘Attend Anywhere’ was made freely available to secondary care from 31 March 2020.

In response to this rapid change, a number of partners across south London mental health service providers, service users, service and innovation connectors and academic evaluators came together with the ambition of forming a learning health care system[1] to evaluate experiences, implementation, and effectiveness of remote consultations in the context of existing and emerging evidence to inform and improve service delivery, during the pandemic and beyond.

Our interested organisations joined in June 2020 as an informal partnership across south London. Together we identified and agreed on a programme as part of COVID-19 response work. Phase one saw the delivery of a survey of ongoing evaluations being conducted in south London; a synthesis of patient, carer and staff surveys; and systematic evidence reviews.

Phases two and three were centred around the dissemination of our findings and establishing a ‘Learning Healthcare System’ on remote consultations in mental health settings.

This local-level learning has the potential to be captured, synthesised and shared across organisations; to identify evidence gaps, create positive change within services and improve experiences and outcomes for patients, carers and staff. This report shares our methods, findings and tools developed and highlights the gaps in evidence and future research opportunities. Please stay up to date with our work develops via our webpage and use the contact form to get in touch with the team.

Professor Fiona Gaughran – Lead Consultant Psychiatrist, National Psychosis Service, Director of Research and Development SLAM, Reader in Psychopharmacology and Physical Health Kings College London, Applied informatics research lead NIHR ARC South London


[1] The concept of a healthcare system collectively gathering information and synthesising knowledge about how well or otherwise service delivery is working then using this understanding to drive ongoing improvement can be described as a ‘learning healthcare system’.  The Institute of Medicine defines a learning healthcare system as a system in which “science, informatics, incentives, and culture are aligned for continuous improvement and innovation, with best practices seamlessly embedded in the delivery process and new knowledge captured as an integral by-product of the delivery experience.”  

Background

Service changes were introduced extremely rapidly across the NHS in response to the COVID-19 pandemic, including in mental health. These included a shift from face to face service delivery to a model where most outpatient contacts were conducted remotely, either on the telephone or by video consultation. These service changes may have significant advantages for many staff and patients, such as convenience, safety, time savings; they may also have disadvantages, drawbacks, or unintended consequences, and may exclude some key populations. 

Our partnership sought to understand the impact of such service changes, what has worked and what has been less successful, and for whom, in order to either embed or adapt, new and emerging models going forward, to ensure the greatest benefits for patients, carers and staff. This report also provides case studies that describe the implementation processes that supported the introduction of these novel models of care in the first phase of the COVID-19 pandemic.  

The project is set mostly in south London and includes the three mental health Trusts – South London and Maudsley NHS Foundation Trust (SLaM), South West London and St George’s Mental Health NHS Trust (SWLSTG) and Oxleas NHS Foundation Trust (Oxleas), working closely with the Health Innovation Network (HIN), Kings Improvement Science (KIS), NIHR ARC South London and the SLaM Quality Centre (a collaboration between the Institute of Psychiatry, Psychology and Neuroscience (IoPPN) at Kings College London (KCL) and Kings Health Partners (KHP) along with the Mental Health Policy Research Unit. University College Health Partners (UCLP) were also involved in the partnership contributing to the core group and sharing the e-survey across their mental health providers in north east and north central London.

Figure 1:

Increase in Microsoft teams call at South London and Maudsley NHS Foundation Trust March 2020 – May 2020.

Figure 2:

Project over-arching objectives: a South London approach to establishing a ‘learning healthcare system’ across health and care

Aims

To bring together the findings from the three workstreams to inform clinical practice and to determine ongoing gaps in knowledge. The workstreams are listed below.

  1. Systematic literature reviews of the evidence on remote consultations pre and during the COVID-19 pandemic
  2. Thematic synthesis of Trust-wide surveys on remote consultations
  3. E-survey of projects on remote consultations across south London mental health NHS Trusts

The specific objective of this work was to identify commonalities and areas of difference; highlight gaps in the evidence base around remote consultations in mental health services that may need to be addressed in future research, and inform future information gathering approaches. The evidence gathered supports mental health services and service users to learn what is already known about remote consultations.

Figure 3:

Methodology

Partnership development

Our interested organisations joined in June 2020 as an informal partnership across south London. Together we identified and agreed on a programme of work as part of COVID-19 response work. The group have formed as the MOMENT (reMOte MENTal health group).

Programme methodology

A project group was established with resources, timelines, and a governance structure across the multiple partners.  A project plan and data capture process were established and a forum (the core group) that allowed sharing of tools and approaches. A dissemination plan and engagement strategy were written to connect with colleagues across London and help create a larger learning network. A group of four experts by experience with a range of backgrounds, including experience of using health and social care services and caring responsibilities, were recruited by the KIS Patient and Public Involvement (PPI) Coordinator through the KIS involvement bulletin. The project group used the learning health system as an organising framework and co-designed the work programme with providers, users, and evaluators.

Programme structure – The programme was split into three workstreams.

  • Workstream one – Evidence reviews

Two reviews were conducted. One ‘Umbrella Review’ on the evidence pre-COVID-19 and a systematic review of evidence during the pandemic

Umbrella review

We conducted an ‘umbrella review’, also known as a ‘review of reviews’, of research literature and evidence-based guidance on remote consultations in mental health, including both qualitative and quantitative literature, conducted and published prior to the COVID-19 pandemic. The aim was to identify the pre-COVID-19 literature on guidance, effectiveness, implementation and economic effectiveness of remote consultations in mental health. Nineteen reviews met our criteria, reporting on 239 studies and 20 guidance documents. The review included studies on telephone counselling, videoconferencing for diagnosis, therapy and education across a range of diagnoses.

Systematic review

We also conducted a systematic review of the evidence on remote consultations in mental health services during the COVID-19 pandemic. Our aims were to identify the adoption and impact of remote “telemental” mental health approaches and facilitators or barriers to optimal implementation. Seventy-seven relevant papers were synthesized.

  • Workstream two – Trustwide patient and staff surveys on remote consultations

A thematic analysis was conducted to synthesise the questions and findings across four organisation wide surveys that were carried out within the three south London mental health Trusts in the summer of 2020. This analysis included results from patient and carer surveys, one survey of Consultants and Specialty and Associate Specialty (SAS) doctors, and one survey that collected responses from patients, carers and staff (see table one). Please see here for copies of each individual survey report.


Table 1:

Table 1: summary of Trust surveys on remote consultations
  • Workstream three –  e-survey

An electronic-survey (e-survey) (Appendix one) was conducted to collect information about evaluation, research or quality improvement projects studying any aspect of remote consultations (both patient-facing and interprofessional) within mental health services. The survey was initially conducted within the three mental health Trusts in south London, though some of the projects described were in local voluntary sector organisations or had national / international reach. The survey was then carried out in north east and north central London following minor modifications.

The focus of the survey was to collate information about project aims and methods; we did not capture findings.

The south London e-survey was initially open to responses between 13th July 2020 and 1st September 2020 and was briefly electronically reopened on 11th November 2020 to allow entry of five additional projects that became known to members of the project group. In north east and north central London the e-survey was open between 5th October 2020 – 15th November 2020.

Summary of findings

Triangulation of evidence and data: A thematic analysis of the findings from the three workstreams was undertaken by a multidisciplinary team of researchers and project managers, further scrutinised by a team of experts by experience, and by clinical and managerial members of the project group. An infographic summarising the findings from this analysis is being developed by the experts by experience (underway).

Workstream One: Evidence reviews

Umbrella review of pre-COVID-19 literature- Please see [https://www.jmir.org/2021/7/e26492] to access the paper.

This systematic review of systematic reviews revealed the following:

  • Remotely delivered mental health services can be as efficacious and acceptable to staff and patients as face-face formats, at least in the short-term.
  • There was little evidence on large scale implementation of remote consultations and effectiveness in ‘real-world’ (i.e. outside of a research study) settings.  
  • Further, the findings of this umbrella review did not provide us with evidence relating to digital exclusion and how it can be overcome and was not able to provide conclusions on particular contexts, for example children and young people’s services or inpatient settings.

A systematic review of COVID-19 literature from during the pandemic– (link will be added to paper when available)

A synthesis of 77 relevant papers from 19 countries demonstrated that globally, many countries had been able to rapidly shift to remotely delivered mental health services during the pandemic. In general, these studies suggest that:

  • Telemental health has been reasonably well accepted, particularly where the alternative was no contact.
  • A mixture of telephone and video-based calls have been offered, with people expressing different preferences for these.
  • Concerns about remotely delivered services are raised in relation to new service users, physical healthcare, and privacy and confidentiality.
  • A small number of studies have formally investigated how telemental health may best be implemented, though suggestions made within this body of literature to support implementation include:
    • Staff training, champions for telemental health, providing service users with access to technology and guidance on how to use it
    • Providing staff with guidance on identifying whether a remote offer is appropriate in different situations / with different individuals.

Overall, the literature suggests that the delivery of telemental health has been largely successful within the context of a pandemic. Nonetheless, longer-term evaluation and better evidence is needed as restrictions on physical distancing between people evolve.

Figure 4:

Infographic the PPI Group produced.

Workstream two: Summary of findings from the Trust patient and staff surveys

Patient experience of remote appointments can be summarised as follows:

Oxleas:

  • 90% of patients responded “Yes” or “Somewhat” when asked if they were happy with the care and treatment received in their remote appointment.
  • 79% of patients responded “Yes” or “Maybe” when asked if they would like to be able to have remote appointments in future.

SWLSTGs:

  • 97% of survey participants reported that they would either ‘definitely’ or ‘probably’ use the system again, were they to be offered the option, despite issues with video and audio quality reported in the survey.

Joint patient and staff survey at SLaM:

From responses to a question on experience and one on future intent, three profiles of virtual contact users was constructed.

• Resistant (n=84): those who reported that their virtual contact experience was “worse/ much worse” than that in face-to-face contact, and they are “somewhat/ very unlikely” to want it in the future

• Ambivalent (n=338): those who did not find virtual contact experience better than that in face-to-face contact, yet they showed no intention to reject it in future

• Receptive (n=123): those who found virtual contact “better/ much better” than face-to-face contact and are “somewhat/ very likely” to want it in future More detailed information on each of the surveys is included in table two in the appendix.

The themes produced were considered according to whether the survey responses had been collected from patients or staff.

The following themes were generated, a range of opinions were expressed in relation to each theme.

  • Convenience.
  • Environment and privacy.
  • Choice.
  • Openness during consultations.
  • Limitations compared to face-to-face.
  • Longer-term use.
  • Resources required for better implementation. 

The analysis of themes across all the surveys is listed in table three in appendix two.

Important gaps in the information available following the thematic synthesis were identified.

  • There was a lack of demographic information about participants. Considering the information about respondents that was available and combining this with knowledge about the survey sampling and distribution methods, we are able to conclude that respondents are not representative of the population and as such the findings of the thematic analysis may not be generalisable
  • We also recognise that the surveys were designed to capture a snap-shot of perspectives at a particular point in time within the context of a pandemic and that view-points shift over time.

 Convenience

“Would prefer to use this system rather than face to face. It is more convenient for me as I work full time and means I do not have to leave work early”

South West London & St George’s Mental Health NHS Trust

“Logistically more convenient, no travel expense and in an era of COVID-19, feels safer.”

“Benefits: less travelling time, more productive”

OXLEAS

 Benefits: less travelling time, more productive

“Easier to manage work life balance, less tired as reduced travel”

South West London & St George’s Mental Health NHS Trust

Making best use of data – improvement analytics

In addition to the Trust surveys, both SWLSTG and SLaM rapidly developed dashboards to track access and productivity to remote consultations over video, in person and telephone. You can view a case study from SLaM here.

Improvement analytics supports delivery of a Trust Data Strategy where the Trusts aim to become a data-driven organisation, where all staff have the capacity and ability to use data to inform decision-making and improvements in order to improve outcomes for the patients and communities. 

This includes:

  • Visualisation of data for improvement
  • Diagnostic data
  • Measurement plans
  • Power Business Intelligence dashboards
  • Data for improvement resources and coaching

These dashboards provide visualisation of data which is intended to be the foundations of a conversation starter.

Please see Figure five and six for snapshots of the dashboards. The SWLSTG dashboard shows the increase in telephone and video consultations from the point of the first lockdown. It also illustrates the time period of the patient survey described in workstream two.

Figure 5:

Figure 5- Example of the SLaM dashboard

Figure 6:

Figure 6: SWLSTG dashboard in relation to their Trust patient survey on remote consultations

Workstream three: Summary of findings from the E-survey

Responses

Responses from south London based mental health organisations described 22 projects. A further 10 projects being conducted in north east and north central London were captured by the survey. The findings describe all 32 projects (please see appendix two for more detail on each project).

Focus of projects

The majority of projects (29 out of 32) sought to assess patient and/or staff perspectives on experience and/or access via surveys or interviews.

Design and methods

There were 16 service evaluation projects; five quality improvement projects; five service evaluation and quality improvement projects; five research projects; and one strategy discussion.

The broad methodological approaches being used are: qualitative, e.g. interviews/focus groups (three projects); quantitative, e.g. analysis of routinely available data (one project); survey (20 projects); mixed methods (7 projects), unclear (1 project).

Patient and public involvement within the projects:

Just over a third of projects (11 out of 32) stated intention to involve their patients/public members within the project team, for example in aspects of project planning and delivery, as opposed to involving patients/service users/carers as participants in the project.

Service areas and patient groups:

A range of service areas and patient groups are included across the 32 projects.

  • Child, adolescent and young people [8 projects]
  • Community Mental Health Services [4 projects]
  • Education and training [1 project]
  • Forensic [1 project]
  • Gender services [1 project]
  • Integrated Psychological Therapy Team [1 project]
  • Aging/older people’s services [2 projects]
  • Learning disability [3 projects]
  • Memory services [1 project]
  • Parents and carers of young people using mental health services [1 project]
  • Personality disorder [1 project]
  • Psychosis [1 project]
  • Adult mental health services [1 project]

Some projects span multiple services, others are Trust (or organisation) wide.

Demographics:

Under a third (nine out of 32) demonstrated intention to collect demographic information from participants. This is potentially an important gap in terms of better understanding for whom remote consultations does and does not work well for.

Remote consultations technology: type, function and support

Many projects included the use of multiple types of phone or video-based technology within their questions / data collection. Technology solutions specified included:           

  • Attend Anywhere
  • Cisco WebEx
  • FaceTime
  • Iaptus Virtual Consultation
  • Microsoft Teams
  • Skype
  • Telephone
  • Zoom

Microsoft Teams and Zoom were the most mentioned platforms.

Across the 32 projects, remote consultations was listed as being used to facilitate:

•            Individual assessments

•            Routine clinical appointments

•            Individual psychological therapies

•            Group psychological therapies

•            Online arts psychotherapy

•            A listening service

•            Emergency appointments

•            Patient reviews

•            Interprofessional communication and administration including meetings

•            Service evaluations & surveys

Respondents were asked whether support is offered for remote consultations to staff and/or patients (e.g. training, introductory video, or technical assistance). Some respondents left this question blank or indicated that no support is offered. Where it was indicated that support is available, this took the form of webinars; patient leaflet / instructions; informal training from staff (unclear whether this relates to staff-to-staff or staff-to-patient), support for staff from Attend Anywhere Team; and staff supporting patients to complete e-surveys.

Questions about preferences or comparisons between different remote consultations platforms are included within ten projects. In addition, nine projects will collect information about technical issues (e.g. hardware, connectivity, inter-operability) or anticipate that this may emerge within qualitative findings

Outcomes being studied:

A minority of projects (four out of 32) were set to assess the effectiveness of remote consultations on clinical outcomes or examine cost. None of the projects were assessing cost effectiveness.

Very few respondents gave clear details of service level outcomes (for example relating to numbers of patients supported or impact on team working) assessed within their projects, though one project will collect service level data on Did Not Attend (DNA) rates and travel.

Participants were asked what (if any) implementation outcomes (e.g. acceptability, adoption, appropriateness, feasibility, fidelity, penetration, sustainability) are being studied and how these are being measured or assessed. Nine projects will assess one or more implementation outcomes via qualitative interviews or surveys with acceptability being mentioned most frequently (four projects). It is unclear whether any of these projects intend to use validated scales to assess implementation outcomes.

A minority of projects assess unintended outcomes (positive or negative) or inequities (for example characteristics of or number of people not accessing remote care).

Theories and frameworks:

The majority of respondents did not report applying a specific framework, theory or model to guide their reported project. 

Potential gaps in research and evaluation:

Several topic areas are not well covered by the 32 projects and are potentially under-researched or evaluated:

  • Contextual details including numbers of patients in contact with services; the proportion of contacts delivered remotely versus face to face; the characteristics of patients who are (or aren’t) accessing services in different ways; and how each of these variables are changing over time
  • Digital exclusion / inequities and gaining an in-depth understanding of which groups of people are not well served by remote consultations
  • Patient and public involvement in designing and executing projects
  • Understanding impact on staff interprofessional working
  • Evaluating the support offered to facilitate remote consultations (e.g. training, webinars, patient leaflets)
  • Effectiveness studies looking at clinical outcomes
  • Cost effectiveness of remote consultations
  • Evaluating implementation of new pathways including hybrid/blended approaches to service delivery (a mix of face-to-face and remote delivery) and de-implementation of old ways of working
  • The use of implementation frameworks / theories / models to understand, contextualise and generalise project findings

However, it should be noted that many of the above topics are indeed touched upon or may emerge as areas of exploration or as findings within some of the projects, particularly within those projects that are collecting qualitative data from participants.

Limitations of the e-survey:

The e-survey provided a snapshot of projects planned or underway between July and November 2020. Many projects will have been instigated subsequently.  

While every effort was made to disseminate the survey widely across the eligible mental health services, we are aware that some relevant projects already underway were missed.

While a small number of responses were received from charitable / voluntary sector organisations, there is likely to be a body of work being undertaken by such organisations that is not captured here.

The survey distribution method used by each organisation did not follow a uniform approach. It is possible that some distribution methods were more effective than others in reaching the relevant people and encouraging project leads to complete the survey. Direct email contact with individuals known to be engaged in relevant projects appeared to be the most successful way to encourage survey completion.

It would have been helpful to obtain more detail about the methods being used within each project, and any repeat surveys in the future should include questions that would elicit this information. For example, where it is indicated that the project involves a survey, we do not have detail about whether the survey was distributed in an electronic (e.g. email or text) or paper format and we often do not have information about the types of questions asked.

The questions on service outcomes, implementation outcomes and unintended consequences were frequently left blank by respondents, potentially indicating that participants did not understand what the question was asking or that they felt it was not relevant to their project. It would be useful to obtain feedback on the survey questions from staff members should the survey be repeated. Furthermore, in future iterations it may prove helpful to follow up each response via telephone interview, allowing exploration of questions where limited detail was initially offered.

It is possible that the methodological quality of future projects could be strengthened by providing team members with training or relevant resources on implementation.

The original aspiration was to embed patient and public involvement within this piece of work. The short timeline meant that it was not possible to involve public members within the development of the e-survey, however, the findings have been discussed in group meetings which include experts by experience.

Commonalities across workstreams and recommendations

The following themes emerged from the three workstreams and are inter-related.

Perspectives are not universal

Our collective findings across the workstreams clearly demonstrate that there are a variety of perspectives regarding remote consultations between staff and patients, and regarding remote consultations more broadly (including staff inter-professional working).

The remote delivery of mental health services works well for some people but not others and is appropriate in some situations or on some occasions but not others for many individuals. There is no ‘one size fits all’ and an individualised approach will always remain the gold standard. This breadth of experience holds true for patients, carers, and staff.

It follows that the effectiveness of remote consultations on a range of outcomes – for example clinical symptoms for patients, or wellbeing or productivity for staff – may not be universal either; this too remains to be established.

Recommendation: Further research is required to better understand under which circumstances remote consultations is beneficial, for whom, and why, in order to make evidence-informed offers regarding the mode of service delivery and to provide increased choice.  This research should purposively seek to tap the views of under represented populations e.g. racial and ethnic minority groups, carers and do deep dives within clinical populations.

Acceptability

Findings from our thematic analysis of the organisation wide surveys mirror findings from our two literature reviews in terms of the acceptability of remote consultations to patients, carers and staff. Both workstreams suggest that while there are different opinions, and while face-to-face contact may be preferred, remote service delivery can be acceptable to patients, carers and staff, at least in the short-term, with many participants indicating that they are satisfied with this way of working. Levels of satisfaction may be higher when video calls are used as opposed to telephone calls. It is noteworthy that the pre-COVID-19 review indicates that these findings may apply outside of the context of a pandemic. Again, findings from the staff and patient surveys, in particular, illustrate the point that individuals may find remote working and/or remote consultations acceptable on some occasions / in some circumstances but not others. Furthermore, the likelihood of non-response bias (where people who take part in a study are systematically different to those who do not) is a key caveat here as participants across workstreams were firstly able and secondly motivated to engage in research and provide their feedback or data may not be representative of wider populations.

Recommendation: A set of questions to be routinely asked as part of future projects should be developed. As an example, questions should elicit participants’ demographic information in order to better understand whose perspectives and data are being captured or excluded. This would help us to understand whether there may be differences according to ethnicity or living in an area of relative deprivation/advantage, for example. This work has commenced by the project team please check for updates.

Recommendation: Future research and evaluation strategies should specifically target the groups who have been under-represented in the data sets analysed to date, including but not limited to: older adults, children and young people, people with learning disabilities, people with an autism spectrum disorder, inpatients, drug and alcohol clients, prison leavers, homeless people and carers.

Accessibility

For many people, for example, those with diverse communication needs, the widespread adoption of remote technologies at the start of the pandemic removed choice and reduced the ability to access mental health services. Findings from the staff and patient surveys demonstrated that some patients had received text messages inviting them to a video-based consultation and including a link to join the virtual meeting without any prior conversation about whether this format was appropriate for their needs. Similarly, some consultations were offered via telephone without assessment of whether this was an appropriate means of communication for individual patients and carers. There are also some good examples of services using innovative ways to engage service users in remote consultations – (Click here to see how the Recovery College at SWLSTGs have supported their students in accessing resources remotely and here to see how SWLSTGs have assisted their patients and carers in accessing Attend Anywhere via a step by step video guide) – and where guidance was produced to help clinicians with decision making tools for choosing between remote, in person or blended consultation.

Recommendation: Organisations and services should ensure that the NHS Mandatory Accessible Information Standards are adhered to when offering remote consultations or indeed when staff are engaged in remote work more broadly. We need to be asking service users and carers about their capabilities and confidence and addressing this.

Convenience

Three of the systematic reviews included within the pre-COVID-19 umbrella review assessed convenience, with most patients indicating that engaging with therapy sessions from home via remote interventions was convenient. Convenience was also a main theme arising from the thematic analysis of survey findings. Many respondents highlighted the convenience and time and/or money saving nature of remote consultations or remote work by virtue of not needing to travel. Further, some people felt that remote appointments could facilitate the attendance of more people from a multi-disciplinary team, though others suggested the opposite was true. Importantly, however, there was a consistent message that some people find remote consultations (or for staff remote work more broadly) inconvenient some or all of the time. Patients cited difficulties with computer literacy, having an appropriate private space, involving family members or carers in appointments where this was wanted, and poor virtual meeting etiquette (e.g. being left in ‘waiting rooms’ for lengthy periods). Staff also noted problems with meeting etiquette (e.g. meetings over-running), unsuitability of the environment for privacy and ergonomic reasons, and the tiring nature of virtual meetings.

Therapeutic alliance

Findings from both the staff and patient surveys and the evidence reviews suggested that for some people it is possible to develop a good therapeutic alliance remotely, although it is perceived that therapeutic alliance may be better when services are delivered face-to-face. In our pre-COVID-19 umbrella review, female older adults and veterans generally expressed a preference for talking to therapists in person. One of the studies included in the during-COVID-19 systematic review reported that 88% of clinicians found it more difficult to establish a therapeutic relationship with new clients when consultations were held remotely. Similarly, two systematic reviews within the umbrella review included findings demonstrating poorer clinician ratings of the therapeutic alliance during remote work. There was some suggestion that therapeutic alliance may develop more easily in consultations held using video-conferencing software as opposed to the telephone.

Technological challenges

Within our patient and staff survey findings, specific issues relating to the use of technology included: user confidence and knowledge around using technology, issues with Wi-Fi and connectivity, ability to access (and cost of) appropriate equipment and software subscriptions, and security/information governance challenges. Having access to technology and appropriate support to use this technology were identified as key barriers to uptake. These findings applied across patients, carers and staff. Within our umbrella review, three of the systematic reviews included mentioned technical difficulties as a challenge, however, none of these reviews implied that technical difficulties had been a severe barrier to implementation. However, issues were reported around mistrust in technology, low image resolution, and connectivity problems.

Exclusion

Findings across workstreams raise the possibility that many people may have been excluded from accessing mental health services with an impact on their wellbeing and their families, or have had their access reduced, as a result of the rapid shift to remotely delivered services. This is mirrored by the presumed exclusion of people who are not routinely using remote technologies from much of the research and evaluation data that have been analysed to date. However, we do not have systematically collected data to demonstrate the extent of digital exclusion or to draw conclusions about which groups of people are most adversely affected. There are a small number of projects (that we obtained details of via the e-survey) that are seeking to understand the perspectives of some of those groups who are more likely to be digitally excluded (for example people with learning disabilities and older adults). Within our staff and patient survey synthesis, it was recognised that the perspectives of older adults are mostly unknown. While the umbrella review included data relating to some groups who are thought more likely to be digitally excluded (e.g. older adults) there was a lack of evidence for other groups including children and young people and inpatients, and overall, as outlined above, a lack of demographic information about people who had participated in the research studies (which was also a key limitation within the e-survey and evidence reviews).

Recommendation: The co-creation of research/evaluation and service delivery strategies to help understand and address digital exclusion and inequities will be vital and careful consideration will need to be given to assess how best to involve those who are under-represented and/or digitally excluded within the development of these strategies. Engagement from a variety of services, for example, assessment centres, food banks, probation services, supported accommodation and community charities may be needed to reach those who are under-represented. It is acknowledged that this work would be challenging, but it will be essential for services where digital is the primary route to care.

Guidelines

Responses to staff surveys synthesised indicated that staff would appreciate clear guidelines on how and when to offer remote consultations as opposed to face-to-face. This was echoed in the during-COVID-19 literature review. Our umbrella review included one systematic review of guidelines for video-conferencing based mental health treatments[1]. This review encapsulates guidance on decisions about the appropriateness of remotely delivered mental health services; ensuring competence of mental health professionals; legal and regulatory issues; confidentiality; professional boundaries; and crisis intervention.

Recommendation: It may be beneficial for those who are developing new guidance on video-based consultations within mental health services to draw upon the recommendations made within the systematic review by Sansom-Daly et al. (2016).


[2] Sansom-Daly UM, Wakefield CE, McGill BC, Wilson HL, Patterson P. Consensus among international ethical guidelines for the provision of videoconferencing-based mental health treatments. JMIR mental health. 2016;3(2):e1

Case studies

Remaining research and evaluation gaps

Reaching those who are least able to engage in remote consultations

All three workstreams likely under-represent the voices of those who are least likely and able to engage remotely which represents a significant and worrying gap in the available evidence. Data collection mechanisms to date have been overly reliant on electronic means – for example surveys administered by email. Innovative methodologies will be required to proactively reach digitally excluded people and enable their participation in both developments of a research strategy and in the research itself, especially under the restrictions in movement and socialisation placed upon the population during the acute phase of the COVID-19 pandemic.

Uptake

Some of the data considered within this project suggest that the offer and uptake of remote consultations varies according to service. Further work could be done to understand the reasons underpinning choices made by services and differences in uptake amongst different patient groups. The routine collection of data relating to the mode of service delivery over time in each clinical pathway would likely form an important next step in the development of a ‘learning healthcare system’ that collectively gathers information and syntheses knowledge about how well or otherwise service delivery is working then uses this understanding to drive ongoing improvement.

Change over time

We are currently unable to draw conclusions about whether perceptions in relation to remote consultations are changing over time nor whether viewpoints will evolve as we move beyond the acute phase of the COVID-19 pandemic and towards a situation where face-to-face contact poses less risk of spreading infection. Longitudinal data are needed to inform future choices and investments. The most rigorous way to assess change in perceptions and experiences over time is to ask the same set of people the same questions repeatedly. This requires each participant to have a unique anonymous identifier assigned to their survey responses in order to track change over time. This methodology is often more time and resource intensive to set up, and the attrition rate (where people drop out / don’t complete surveys) may be high. Further, people who are motivated to participate in completing a series of surveys may have different characteristics or perceptions compared to people who do not participate.

Blended models of service delivery

We currently know very little about models of delivery, experiences and effectiveness of mental health services that are delivered through a combination of remote and face-to-face consultations.

Recommendation: Research is needed to evaluate the implementation of new pathways including hybrid/blended approaches to service delivery (a mix of face-to-face and remote delivery) and de-implementation of old ways of working.

Effectiveness

While the pre-COVID-19 umbrella review demonstrated that remotely delivered services can be as good as face-to-face appointments in improving clinical outcomes in some circumstances, we cannot say with certainty whether this finding holds true in the case of fast and widespread implementation due to the pandemic, as there was a lack of high quality quantitative evidence within our during-COVID-19 literature review . 

Recommendation: It is important that future work addresses questions of clinical effectiveness and better ascertains for which groups of people and which clinical pathways remote consultations are and are not effective before being routinely offered as the norm post-pandemic.

Cost and cost effectiveness

Given the relative dearth of evidence on the effectiveness within the pandemic context, it follows that little is known about the cost effectiveness of remotely delivered mental health services. Within our umbrella review, two systematic reviews examining either costs or cost effectiveness met our inclusion criteria. One systematic review concluded that tele-psychiatry can be cost effective compared to face-to-face interventions, particularly in rural areas where the number of consultations required before telepsychiatry becomes more cost effective (combatting initial equipment costs) is lower. In the second systematic review which looked at costs, 60% of included studies reported that telepsychiatry programmes were less expensive than in person care, due to savings such as travel time and reduced need for patients and their families to take time off work. However, eight studies in this review concluded that telepsychiatry programmes were more expensive, particularly due to videoconferencing equipment costs. A final study included in the review found no difference in costs.

Recommendation: Further research regarding costs and cost effectiveness is needed, particularly as video-conferencing software is now more widely and cheaply available.

Implementation effectiveness and support

Our COVID-19 specific literature review had a focus on exploring barriers and facilitators to optimal implementation of remote consultations and the emerging evidence on this is summarised. the pandemic led to remote consultations and remote work being implemented urgently as a matter of need and not choice. This presented little chance to study implementation effectiveness in real-time, thus work remains to be done to establish best practices in terms of implementing remote consultations. Such studies are now feasible as remote options are likely to be offered long-term in some settings. The existing implementation science literature may be helpful in designing better implementation support going forward. Furthermore, we may be able to apply frameworks retrospectively in order to generate additional learning from implementation efforts undertaken within the context of a crisis.  

Next steps

The programme has achieved a great deal since June 2020 and the work continues using the Learning Healthcare system model as our guiding principle. 

Evaluating remote consultations is a priority for the London Healthcare system.  Research resource is being established for this for the NIHR Applied Research Collaborations (NIHR ARCs) that we hope will continue to inform our work.

We’re here to help

Find out more about our work in mental health.

Joint Pain Advice in the workplace

Work and Health Challenge Fund Project

About

The Joint Pain Advice (JPA) model was developed by the Health Innovation Network (HIN) as a result of an identified need for accessible, personalised, understandable information and practical advice and support about how to self-manage the impact of chronic pain. Pilot studies have demonstrated that JPA supports participants with chronic knee, hip and back pain to reduce their pain and symptoms, increase their physical activity levels and improve their physical function and mental wellbeing in both clinical and community settings.

HIN and the Bone and Joint Research Group (part of Royal Cornwall Hospitals NHS Trust) were awarded funding from the Work and Health Challenge Fund to test the JPA model delivered in the workplace to employees.

The evaluation of this service improvement project aims to understand the effectiveness of JPA as a workplace intervention.  It explores the clinical effectiveness of JPA and the acceptability and feasibility of the programme for participants (employees), JPA Advisors and workplaces, delivered in a ‘real world’ workplace setting.


Executive Summary

Overview

In the UK over 8.75 million people have osteoarthritis (OA) and around 10 million people have chronic low back pain. These problems impact an individual’s personal, social and working lives, affecting physical and mental health and wellbeing1. They also have a wide socioeconomic impact through substantial health and social care expenditure and lost productivity2. Although National Institute for Health and Care Excellence (NICE) guidelines core recommendations for the management of OA3 and low back pain4 are to provide information and advice to improve understanding of the condition and management strategies and to encourage increased physical activity and support weight loss (where appropriate) as effective ways of managing the condition and its impact, in reality, few people receive this advice.

Joint Pain Advice (JPA) supports people to self-manage their chronic hip, knee and/or back pain, based on NICE guidelines. Within the JPA model, participants are invited to up to four face-to-face appointments over six months. This intervention has been successfully piloted in primary care and community settings with c600 participants who reported improvements in pain, physical function, physical activity and mental wellbeing5,6. It was also shown to reduce follow-up appointments with a GP5. A social return on investment evaluation found that the JPA intervention offered a social return on investment of between £2 and £4 for every £1 invested7.

JPA in the workplace was one of 19 initiatives across the UK selected to receive funding from the Work and Health Challenge Fund. As part of this project, JPA was offered to employees across four large organisations in London and 16 organisations in Cornwall, including several small and medium enterprises (SMEs). Two different models of delivering JPA were tested:
In London, existing members of staff of the larger organisations were trained to deliver JPA to their organisation’s employees. They are referred to in this report as ‘in-house’ Advisors.
In Cornwall, JPA Advisors were trained and travelled around from workplace to workplace to deliver JPA to employees of several organisations, including small and medium enterprises (SMEs). They are referred to in this report as ‘peripatetic’ Advisors.

We’re here to help

We are always happy to hear from people who want to know more about the JPA in the workplace project or our other work in musculoskeletal.

Psychologically Informed Collaborative Conversations
(PIC-C)

Pain is common in the general population, affecting between one-third and one-half of UK adults. The connection between pain and psychological wellbeing is reciprocal – with increased awareness that when pain persists it often leads to increased psychological distress and high levels of psychological distress can increase the likelihood that painful musculoskeletal conditions will either persist or develop.

Helping clinicians implement psychologically informed treatment strategies and techniques offers the promise of improving patient care for people living with pain.

In 2020, The Health Innovation Network AHSN, in partnership with St George’s Hospital NHS Foundation Trust, Kingston Hospital NHS Foundation Trust, the Physiotherapy Pain Association and Duke University, USA secured funding from Q Improvement Lab, a Health Foundation Initiative, to test innovative ideas to improve care and services for people living with pain. An evaluation report of this project – Psychologically Informed Collaborative Conversations (PIC-C) – now available to download.

“PIC-C training has changed my practice quite a lot. I’m much more happy to sit and listen to the patient. Give them more time, get the whole story, take more time on the subjective and include more of the biopsychosocial [components], rather than just looking at the physio and the exercises.”

Course participant

Report summary

PIC-C is an evidence based online training and supervision programme to help physiotherapists increase their confidence in delivering psychologically informed care and support to patients presenting with pain. The design is based on four key themes:

  • building a therapeutic alliance;
  • reducing perceived threat of pain;
  • reconceptualising pain beliefs and somatic experience; and
  • fostering self-efficacy for pain control.

PIC-C was co-created with patients who were equal members of the project team, involved in reviewing, critiquing and contributing to content.

PIC-C was tested with 38 physiotherapists. Evaluation two weeks after completing the course showed a number of significant benefits of the training.

Graph showing reported improvements in compassion, confidence, resilience, work related fatigue and work satisfaction
Graph indicating the impact of PIC-C training on participant attitudes and feelings (n=38)
  • Participating patients who stated they were involved in their diabetes care during their stay

    66 %

  • Wards with a self-management policy for diabetes

    17 /28

I definitely feel more confident now, in seeing this particular group of patients. Talking through other people’s experiences and my own has definitely made me feel more confident with the idea of [psychologically informed practice].”

Course participant

PIC-C was tested with 38 physiotherapists.  Evaluation showed: A reduction in physiotherapist anxiety and increased confidence with 100 per cent of respondents stating PIC-C had a positive impact on their confidence in delivering psychologically informed consultations.

A change in practice in using psychologically informed strategies and techniques with patients as participants progressed through the training. The biggest change being that Physiotherapists attended more to the therapeutic alliance. Pre-PIC-C, 19 per cent of participants stated that they focused on ‘developing a therapeutic alliance’ as a standard part of their practice. Post-PIC-C, this increased to 81 per cent of participants.

Participants valued the supervision element of the programme, with participants recognising this was a unique benefit of the course offer. Having protected time to discuss the practical application of techniques learned including complex cases helped embed learning and strengthened relationships with colleagues.

PIC-C influenced a change in practice, evidencing a shift in confidence in adopting psychologically informed approaches. PIC-C provides benefits to practitioners themselves and the organisations in which they work.

The PIC-C training course is relevant to all physiotherapists and health professionals and therefore will be of interest locally, nationally and internationally. Supervision post teaching sessions was identified as a ‘missing link’ by physiotherapists in the literature and our exploratory focus groups, and its inclusion sets this training apart from other packages. 

Presently, there is no similar learning programme available to physiotherapists in the UK.  We therefore recommend PIC-C is made available to health professionals as a stand-alone programme or incorporated into wider educational learning packages e.g. postgraduate courses.  We also recommend securing accreditation to satisfy quality control and continuing professional development requirements and recognition for Advanced Clinical Practice.

Additional resources

We’re here to help

If you have any questions about the PIC-C project or would like more information please contact Amy Semple, PIC-C Project Lead.

What is Person-Centered Care and why is it important?

What is person-centered care?

Person-centred care is a way of thinking and doing things that sees the people using health and social services as equal partners in planning, developing and monitoring care to make sure it meets their needs. This means putting people and their families at the centre of decisions and seeing them as experts, working alongside professionals to get the best outcome.

Person-centred care is not just about giving people whatever they want or providing information. It is about considering people’s desires, values, family situations, social circumstances and lifestyles; seeing the person as an individual, and working together to develop appropriate solutions.1,2,3 Being compassionate, thinking about things from the person’s point of view and being respectful are all important. This might be shown through sharing decisions with patients and helping people manage their health, but person-centred care is not just about activities. It is as much about the way professionals and patients think about care and their relationships as the actual services available.

In the past, people were expected to fit in with the routines and practices that health and social services felt were most appropriate.4 But in order to be person-centred, services need to change to be more flexible to meet people’s needs in a manner that is best for them. This involves working with people and their families to find the best way to provide their care. This partnership working can occur on a one-to-one basis, where individual people take part in decisions about their health and care, or on a collective group basis whereby the public or patient groups are involved in decisions about the design and delivery of services. The underlying philosophy is the same: it is about doing things with people, rather than ‘to’ them.

There is no one definition of person-centred care.5,6 People might also use terms such as patient-centred, family-centred, user-centred, individualised or personalised.7,8,9,10 Regardless of the terms used, a lot of research has looked into what matters to patients and how to provide person-centred care to make sure people have a good experience.11,12,13,14,,15,16,17,18 There are many different aspects of person-centred care, including:19

  • respecting people’s values and putting people at the centre of care
  • taking into account people’s preferences and expressed needs
  • coordinating and integrating care
  • working together to make sure there is good communication, information and education
  • making sure people are physically comfortable and safe
  • emotional support
  • involving family and friends
  • making sure there is continuity between and within services
  • and making sure people have access to appropriate care when they need it

Why is person-centred care important?

Person-centred care is a high priority

Making sure that people are involved in and central to their care is now recognised as a key component of developing high quality healthcare.20,21,22,23

There is much work to be done to help health and social services be more person-centred and this has become more of a priority over the past decade.24,25 This is because it is hoped that putting people at the centre of their care will:

  • improve the quality of the services available
  • help people get the care they need when they need it
  • help people be more active in looking after themselves
  • and reduce some of the pressure on health and social services

In the UK there is increasing demand for health services and there are limited resources. People are living longer and may often have many health conditions as they age.26,27 Research has found that person-centred care can help to improve people’s health and reduce the burden on health services,28,29,30 so government policy is emphasising strengthening the voice of patients31,32,33,34 and moving away from a paternalistic model where professionals ‘do things to’ people.35,36,37 The NHS constitution in England has person- centred care as one of its seven core principles. This philosophy is also built into National Service Frameworks, monitoring requirements and legislation in all four countries of the UK.


Person-centred care can improve quality

Research has found that person-centred care can have a big impact on the quality of care. It can38,39

  • improve the experience people have of care and help them feel more satisfied
  • encourage people to lead a more healthy lifestyle, such as exercising or eating healthily
  • encourage people to be more involved in decisions about their care so they get services and support that are appropriate for their needs
  • impact on people’s health outcomes, such as their blood pressure
  • reduce how often people use services. This may in turn reduce the overall cost of care, but there is not as much evidence about this
  • improve how confident and satisfied professionals themselves feel about the care provided

Reviews of research about this topic found that offering care in a more person-centred way usually improves outcomes.40 Some of the most common ways that have been researched to improve person-centred care include helping people learn more about their conditions, prompting people to be more engaged in health consultations and training professionals to facilitate care that empowers people to take part.41,42

Offering care in a more person-centred way can even improve outcomes for professionals. A review of seven studies about professionals delivering person-centred care in nursing homes found that this approach improved job satisfaction, reduced emotional exhaustion and increased the sense of accomplishment amongst professionals.43

Research has found that some components or underlying principles of person-centred care may be most important for affecting outcomes, including:44,45,46,,47,48,49,50,51,52,53,54,55,56,57

  • getting to know the patient as a person and recognising their individuality
  • seeing the patient as an expert about their own health and care
  • sharing power and responsibility
  • taking a holistic approach to assessing people’s needs and providing care
  • including families where appropriate
  • making sure that services are accessible, flexible and easy to navigate
  • looking at people’s whole experience of care to promote coordination and continuity
  • making sure that the physical, cultural and psychosocial environment of health services supports person-centred care
  • making sure that staff are supportive, well trained in communication and striving to put people at the centre of their care

While the evidence is mounting that person-centred care can make a difference, there are not that many studies about outcomes yet and some research has mixed findings.58, Person- centred care means different things to different people and this might be why there are mixed findings. This makes it even more important to think about how to measure and put person-centred care into practice, so that health services can better understand the benefits of this approach.


Towards person-centred care in South London

In order to be more person-centred, health services need to know what is most important to people. Person-centred care can focus on people’s individual health needs, but it is also about involving people in planning and evaluating services. Words such as ‘co-production’ and ‘co-design’ have been used to describe involving people in developing services and assessing their quality.

Based on all of the available evidence and feedback from patients and professionals, the Health Innovation Network – South London believes that beginning with a person-centred approach will lead to positive outcomes for patients and carers. Finding out what is important to patients and carers and making improvements in these areas will improve people’s experience of care and help them be more independent. For this reason, The Health Innovation Network is developing ways to measure the experience of health services in one of its key clinical priority areas: dementia. A Delphi technique is being used to get opinions from people with dementia, carers, patient and carer representative organisations, professionals and other stakeholders. People will be invited to rate the importance of various aspects of the quality of dementia care. Their responses will be summarised and circulated for discussion in repeated rounds until consensus is reached. This will help to make sure that the things being measured and improved upon are important to the people using services.

This is an innovative approach because although the concept of person-centred care puts patients at the heart of their care, few approaches to measurement have been driven by patients or build on aspects that patients and carers identify as most crucial.59 However, it is important not just to focus on people’s preferences because these can change over time and people generally prioritise the things they are currently doing rather than the potential way things could be.60 One of the challenges that the Health Innovation Network is tackling is how to define what services are fundamentally trying to achieve, and this is being done in partnership with patients and carers.

References