Message from Catherine Dale

Welcome to this edition of Partners with People, the public involvement bulletin from the Health Innovation Network.

In our last newsletter we welcomed Faith and Aurora, our new Lived Experienced Partners who joined the HIN in February. I am very proud to say that since then, they have already had a massive impact across all the HIN’s teams, contributing to over 20 projects and bids. This is quite a feat considering they only work with us one day a week!

But don’t just take my word for it, it’s great to hear from Aurora and Faith themselves:

"I feel that the way I’ve been able to contribute towards a number of HIN projects makes it clear experiential knowledge is valued. I’m sure that as this has been gained by direct encounter, it’s been impactful even if almost impossible to put into words, being tacit and based on empathy, intuition and feeling."
Aurora Todisco, Lived Experience Partner

"This role allows us to help shape the inclusive approach to involving lived experience from the beginning of a project."
Faith Smith, Lived Experience Partner

Across the HIN, there continues to be lots of exciting involvement projects. Of note, our Patient Safety Team are working on a project around chronic pain using Experience Based Co-Design methodology. This methodology uses patient interviews to inform a series of patient and staff workshops, followed by co-design sessions to develop solutions in partnership. This approach is a great way to ensure that the needs of people are at the centre of your work. You can find out more about the project by reading this blog.

With Faith and Aurora’s support, we have just recruited three Experts by Experience to support our evaluation of culturally competent genetic services. I am really looking forward to seeing how this important project will be shaped by working with these experts.

In my own news I have recently been appointed full-time as the Deputy Coordination Director for the AHSN Network – the central team supporting the work of the 15 Academic Health Science Networks (AHSNs) across England. I am really pleased that as part of this role I have responsibility for widespread patient and public involvement work across the whole network. I look forward to finding out more about approaches that people are taking in other parts of the country and to spread the learning I have gained from work at the HIN.

I think there is still much more we can do to enhance the involvement of patients, the public and all people with lived experiences of health and care services in the AHSN Network’s ambition and purpose of ‘Transforming lives through healthcare innovation.’

I recently heard a great speech by Victor Montori, a Peruvian doctor who has set up The Patient Revolution. He said that "unhurried conversations would be the greatest innovation in healthcare". If this is an idea that sparks something in you, please contact me to think about how we might turn this spark into a flame.

Catherine Dale

Deputy Coordination Director, The AHSN Network

News

The Key to Evaluation: involving experts by experience in our research on remote monitoring

Supporting remote monitoring has been an important focus of the HIN over recent years. In 2019, we brought together colleagues from three trusts in south east London with the aim to improve outpatient experiences for a cohort of patients with rheumatoid arthritis (RA), and in 2021, the HIN began working with Experts by Experience from King's Improvement Science to inform research and evaluation. This blog explores our collaborative work and how the experts have used their personal experiences of RA to make a difference to others living with the same condition.

Read the full blog here.

HEAL-D celebration event

HEAL-D is a type 2 diabetes self-management programme, tailored for people from African and Caribbean communities. Involvement has been key to the HEAL-D project at the HIN, and to mark the end of the project we held a celebration event for the experts by experience who co-designed the programme. Over a delicious Caribbean dinner, the team shared the project findings with the group, explained the impact that they had on the project and thanked them for their contributions. To read more about involvement in HEAL-D, please see this blog and to read more about HEAL-D check out the newly relaunched website.

Digital exclusion is not solved by enabling online access alone

To make digitally enabled healthcare more inclusive requires co-producing services to meet the needs of various population groups with different levels of digital functionality for patients to choose from, writes Pritesh Mistry on HSJ.

Read the full blog.

Impatient: When elephants fight, the grass gets trampled

Patient (Lived Experience) Leadership is about those affected by life-changing illness, injury or disability who want to influence change through being equal partners in decision-making. In this new monthly ‘expert briefing’, patient leadership champion David Gilbert picks out the most significant developments in a field of increasing relevance to the NHS.

Read the full blog.

NHS England podcast: How local health systems can help build better communities

This recent NHS England podcast explores how integrated care boards can work in partnership with people and communities to improve health, wellbeing and much more.

This podcast features Deputy Director for People and Communities at NHS England Olivia Butterworth, in conversation with Patricia Miller, Chief Executive at Dorset Integrated Care Board.

Listen to the full podcast on Soundcloud.

King's College London Cancer Prevention Group

The Cancer Prevention Group’s research focuses on cancer prevention and early detection. They work with Patient and Public Involvement (PPI) members to shape, update and refine this research. This is aimed at creating research for all.

Interested in joining?

No personal experience of cancer needed
All views and experiences are welcomed

To sign up, visit www.cpg-ppi.com. There are no deadlines to apply. Anyone interested is invited to sign up, for entirely flexible involvement whenever time and circumstances allow.

Any questions? Please email the Cancer Prevention Group or message 07786 624372. Find out more.

King's Improvement Science: Involving the public

The team at King’s Improvement Science (KIS) work closely with people who have personal experience of using health and social care services in south London, or caring for someone who does.

This is a priority for KIS – by involving people who use services and including their voices, they ensure that their research is appropriate to the local situation, and informed by people with first-hand knowledge and expertise of services.

They aspire to strengthen and improve our involvement activity by reflecting on what has worked well and how they can ensure continued diverse, inclusive and accessible involvement.

Join the King's Improvement Science involvement mailing list for news and opportunities to get involved with KIS.

Do you have any news or great examples of work related to involvement for a future bulletin? Let Sophie Lowry know.

Upcoming Events

Tellmi webinar: We need to talk about Autism

Wednesday 31 May, 12 - 1pm

Suzi Godson from Tellmi and Simon Baron Cohen from the Autism research Centre at the University of Cambridge explore the social, emotional and financial cost of delayed autism diagnosis and how digital tools can provide vital support.

Tellmi is a digital mental health solution for young people aged 11-25 which uses a pre-moderated, anonymous, age banded peer support model to enable young people to help themselves by helping each other. The app has been independently evaluated and is evidenced to improve mental health in young people (Ravaccia, 2022). Tellmi has supported 75,000+ young people and is commissioned by the NHS.

Join us to hear from:

Suzi Godson from Tellmi reflecting on their most recent SBRI project researching autism with 1,200+ young people.
Simon Baron Cohen from The Autism Research Centre at the University of Cambridge explaining why girls don’t get diagnosed and how screening tools can help to speed the path to clinical diagnosis
A Tellmi user sharing their lived experience of late diagnosis and the impact that it has had on their mental health

The webinar will finish with a panel discussion and the opportunity to ask our speakers questions.

Find out more and register to attend.

Co-Production Collective Cuppa June

Tuesday 6 June, 5 - 6.30pm

Co-Pro Cuppas are run by the Co-Production Collective. They are informal monthly sessions to connect with friends, meet new people and chat about whatever you fancy over a cuppa!

Find out more and register.

The Working Together Partnership: How to involve men in service design, delivery and research

Wednesday 14 June, 11:30am - 1pm

Ensuring that health services, research and education meet the needs of people from all walks of life is vital. To achieve this, patients, their families and carers, alongside health and care staff, all need to work together.

This webinar is the second of a two-part series focusing on men’s health. It will explore how health and care providers can involve men with physical ill health, and their families, in the design and delivery of service and research.

You will hear from three speakers who will each share their thoughts and experiences - from lived experience, to professional experience of coproduction work with men around their physical health.

Come along and find out what works and what doesn’t work and how to put co-production into practice.

Find out more and register.

Tips, Tools and Training

Working with People and Communities Training

Learn how to engage with different people and communities to reduce inequalities and ensure inclusive access to healthcare's in this training course from NHS England.

Over two three-hour sessions, you will:

learn how to work effectively with diverse groups can help you better meet the needs of the different people you work with;
unpack how different communities can have very different experiences of healthcare as you identify who faces bigger barriers;
explore inclusive engagement activities;
develop an awareness of implicit bias and underrepresentation.

Resource Library for Personalised Care

The Coalition for Personalised Care (C4PC) have added several great new resources this month to their growing resource library and we're always on the lookout for toolkits, guidance, discussion papers or reports relating to Personalised Care.

If you have information to share, please email the details to the team or upload them via this 'Share a Resource' form.

View the full library of resources here.

Partner Updates

The Applied Research Collaborative (ARC) South London produces a quarterly newsletter on involvement research. If you would like to be added to the mailing list please contact Savitri Hensman.

King's Improvement Science (KIS) are recruiting a Patient and Public Involvement Co-ordinator to join their friendly team. This is an exciting opportunity to bring together lived experience of accessing health and/or social care services with research and project management skills to coordinate patient and public involvement (PPI). The closing date for applications is Wednesday 14 June.

Find out more and apply here.

Southwark Community Health Ambassadors Network is there to help inform, empower and support the community with issues relating to health and wellbeing.

Find out more about how to join and register your interest.

A new blog from Primary Care Commissioning (PCC) details Professor David Colin-Thomé’s reflections on the recently published Hewitt Review and Fuller Stocktake.

The blog identifies that the recommendations and quotes on primary care contracting are potentially far-reaching. The development of teams and considerations on their effectiveness as well as the future of the GP contract model are discussed.

Read the blog here.

The Patients Association has published The General Practice Data Trust (GPDT) Pilot Study: Report on Patient Focus Groups, a report on patients’ attitudes about sharing their health data for research and planning purposes.

The research found that patients mostly supported the use of patient data in health research, but often did not like the idea of companies potentially making money from the use of their health data. Many felt that they had not been given enough information about the General Practice Data for Planning and Research programme; and some would have been happy to share their data if they had known more about the programme.

The researchers also asked focus group participants if holding patient data in a trust would reassure them about how their data are used. This was welcomed and the report goes into more detail about what patients thought of this idea.

The NHS is changing how outpatient services are delivered so that patients can be seen more quickly and can access and interact with services in a way that better suits their lives.

This means giving patients and their carers more control and greater choice over how and when they access care. We are empowering patients to book their own follow-up care as and when they need it, providing the option of telephone or video consultations where appropriate, and working with GPs to enable access to earlier expert advice.

Implementing these interventions, as well as taking steps to address reasons patients might miss their scheduled appointments, helps us to deliver a more personalised model of outpatient care whilst also supporting elective recovery.

Transforming care in this way is a key commitment set out in the NHS Long Term Plan and is key to achieving the aims of personalising outpatients as set out in the Delivery plan for tackling the COVID-19 backlog of elective care. Guidance on the principles and approach to delivering a personalised outpatient model is available.

The last of the Coalition for Personalised Care's (C4PC) 'Three Ss of co-production: Storytelling' workshops took place on 19 May. Thank you to everyone who has attended this series of workshops.

The team are very grateful to Rabia and Fahmida from Media Trust for their insightful presentation and providing us with case studies on impactful storytelling.

They have produced an event summary for this event, as well as the other sessions in the series:

Sharing stories
Shaping through storytelling
Supporting our storytellers

Having completed two co-production workshops over the last year, they are now bringing these to a close. They are keen to continue offering this learning format to our Partners and allies, so if anyone would like to suggest some future topics, particularly around the topic of Personalised Care, please do get in touch.

10 Steps to working with People and Communities

10 Steps to working with People and Communities is an approach recommended by the national Public Participation Team to help ensure that we embed working in partnership with people and communities when starting a new project.

We’re delighted to share training materials and resources that teams in NHS England and the wider system can use to deliver this training. All training materials and resources have been refreshed or co-designed in partnership with colleagues from across the NHS, Patient and Public Voice Partners and external suppliers.

There is also an offer to provide support through Local Trainer Programme sessions, a networking and discussion space via the 10 Steps Local Trainer Community of Practice and some examples of how the materials are being used by NHS teams in different settings.

We currently have spaces available on our Local Trainer Programme session on 24 May, 10am-4pm. If you would like to sign up, please contact england.ppve-learning@nhs.net.

This is part of the system-wide offer from NHS England Public Participation Team to promote the statutory guidance that was published in 2022. This offer includes our Working with People and Communities MOOC training, a webinar programme and regular podcasts. Details of these are shared on the general #StartWithPeople Future NHS space.

If you have any questions or need further support to access these materials, please contact us via the discussion space or by email at england.engagement@nhs.net.