We know we need genuine public involvement in healthcare. Why are we still getting it wrong?

We know we need genuine public involvement in healthcare. Why are we still getting it wrong?

Andrew Walker, Deputy Clinical Director MSK and Evaluation Lead, Health Innovation Network reflects on a recent patient and public involvement and engagement process and the need for a relentless focus on true engagement.

Healthcare in the NHS has come a long way from the paternalistic, prescriptive model and principles upon which it was founded in post-war Britain.

The aspiration for greater and better patient and public involvement and engagement (PPIE) is at the heart of today’s NHS. There are multiple, high profile policy documents that reiterate its importance and the need to continue to focus on increasing patients’ voice to improve care. We now have lay member representation on the boards of NHS trusts and clinical commission groups and embedded into how research is prioritised (such as James Lind Alliance), designed and approved (such as INVOLVE and NHS Research Ethics Committees). There is also an increasing wealth of resources and guides from organisations such as INVOLVE and The King’s Fund to help us do PPIE well and in a meaningful way.

There are many examples of when PPIE has been done well, but there are still many occasions when we still fall short. Recently, I was involved in a PPIE process and I wanted to share my experience of how we fell short, despite best intentions.

Background to the process

In 2017, NHS England and NIHR published ‘12 actions to support and apply research in the NHS’, which tasked AHSNs to set out local NHS research and innovation priorities. Collectively, the AHSN Network, NIHR and NHS England commissioned ComRes to undertake a Local Survey of Innovation and Research Needs by engaging with key senior stakeholders nationally and locally. Published in June 2019, the report identified a number of priorities across workforce, mental health, digital technology and more. As part of an on-going engagement to explore and refine local priorities, the Health Innovation Network and CLAHRC south London jointly held a Patient Public Engagement event on with service users from across south London.

There were 10 participants with a mix of gender, ethnicity, age and physical/mental conditions. Dr Jane Stafford (South London ARC Associate Director of Operations) and I presented the background to the Survey, AHSNs and CLAHRC/ARCs. The session was facilitated by a PPI expert.

PPI perspectives on the priorities

In terms of the contents of the report, participants felt it was a useful start and broadly concurred with the priorities. However, they felt that some priorities did not resonate with them as patients (e.g. workforce) and illustrated the disconnect between what professionals working within the system perceived as local priorities and service users’ needs. The group wanted a greater focus on research and innovation that addresses the health inequalities and health needs of underrepresented service users. Participants were passionate in expressing a need to implement and deliver interventions and services that meet the needs of people from different ethnic backgrounds (e.g. Southwark has the largest African diaspora of all London boroughs) and excluded/marginalised groups (such as those experiencing homelessness). Participants also felt there was not enough focus within the priorities about improving patient experience, patient choice or personal budgets.

A feeling of ‘rubber stamping’

What I had not expected was the group’s strong criticisms about the process that had been used to identify local priorities. I had seen the session with PPI members as a step in the process of engagement. Whereas, they perceived it more as ‘rubber stamping’ a report that had already defined the local priorities. Specifically, they questioned why there hadn’t been public/patient involvement from the outset. Rightly, participants felt this would have improved the balance of priorities and made the survey more inclusive and comprehensive, and their involvement more meaningful. As I listened, the penny dropped and I thought ‘you’re right, we did it again!’

We highlighted that the survey report provided a sample of stakeholder perspectives and was a starting point for discussion and their input as valid and important as what was in the report. However, the group’s perception was that the timing and scale of PPI in the process gave greater status to stakeholders’ priorities. It also meant that whilst they broadly agreed with the priorities, they felt disconnected with some and couldn’t always see themselves or things that were important to them in the survey.

Being bolder and getting it right

For me, this process was a valuable reminder of the power words gain when committed to paper and how we can always improve our engagement with service users. The experience has renewed my personal commitment to this and to support others to do the same.

We need to be bolder in challenging colleagues and ourselves when we see PPIE is not being done appropriately or a process could be improved. For me, it comes back to the INVOLVE core principles for PPI of respect, transparency and responsiveness. If we can’t clearly demonstrate we’re addressing these principles – no matter the pressure – we need to stop and re-think our approach.

Health and social care are complex, dynamic systems where not one person or group can understand the whole system. It’s only by engaging with people from across the system (public and professionals) and by sharing our perspectives and knowledge that we can bring about system change.

This calls for a more radical shift where we cede power to patients and start to co-design and co-produce health and social care. But to get it right, this approach must also be backed up a commitment to provide adequate time, resources and political will and leadership – across the whole system.

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South London NHS Innovation and Research Priorities Highlighted

South London NHS Innovation and Research Priorities Highlighted

Following a national consultation of key local health stakeholders conducted across all regions in England, the NHS innovation and research priorities for south London have been outlined in the regional statement from the Health Innovation Network.

The views of clinical leaders, managers and directors within each Academic Health Science Networks (AHSN) region were collected through qualitative interviews with 61 people and a questionnaire which received more than 250 responses in total. The survey was conducted by ComRes, an independent research agency.

This widespread consultation was commissioned by the AHSN Network, in partnership with NHS England and the National Institute for Health Research (NIHR) to inform the publication of a statement of local NHS research and innovation needs for each AHSN region – as one of the actions in the NHS England and NIHR joint paper on ‘12 actions to support research in the NHS’.

Whilst there were some differences in regional priorities, common themes emerged which reflected both south London priorities and wider challenges facing the NHS and align with the priorities of the NHS Long Term Plan. These include:

  • a need for innovation and research addressing  workforce challenges
  • delivery of mental health services and providing care for patients with mental health needs, particularly in children and young people
  • integrating services to provide effective care for patients with complex needs – including  multimorbidity and frailty
  • use of digital and artificial intelligence technology

The National Survey Full Report outlines the findings from the consultation with local health and social care stakeholders across England. It includes a detailed analysis of the innovation and research needs at local level across all AHSNs.

Natasha Curran, Medical Director, Health Innovation Network said: “Thank you to the south London stakeholders for their invaluable contributions. The statement provides a really useful starting point to build discussions with wider stakeholders, patients and others in the community to address the priorities outlined.”

Professor Gary Ford, Chief Executive of Oxford AHSN, led the AHSNs input into the survey. He said: “The survey provides important information on the research and innovation needs of the NHS which will shape future work of AHSNs and the research community”.

Topol Review highlights potential of digital technologies to address the big healthcare challenges

Topol Review highlights potential of digital technologies to address the big healthcare challenges

Written by Anna King, Commercial Director at Health Innovation Network.

It is not often that an independent review for a UK Secretary of State gets held up for a book launch, but such is the case when you ask a world-eminent, California-based cardiologist to review the changes required in the NHS healthcare workforce to ensure preparation for the technological future.

Dr Eric Topol, probably best known for his book, The Patient will see you now, published his long awaited The Topol Review: Preparing the healthcare workforce to deliver the digital future last month. The report highlights how digital healthcare technologies have the potential to address the big healthcare challenges as well as tackle increasing costs. The report observes that innovation will “increasingly shift the balance of care in the NHS towards more centralised highly specialised care and decentralised less specialist care”. This shift in the pattern of need and services is aligned with much of the HIN’s work and our focus on out-of-hospital care. Flatteringly, Topol also supports the ambition that the UK has the potential to become a world leader in such healthcare innovations. This is particularly exciting to hear given the work the HIN has been doing locally with DigitalHealth.London building upon local strengths in clinical care, research, education and business to boost London as a world leader in digital health.

However, Topol also offers words of caution for those impatient for new digital healthcare technologies to reach their full potential. As he observed, “it can take up to 10 years to realise cost savings, investment in IT systems, hardware, software and connectivity, as well as the training of healthcare staff and the public”.  The potential benefits of genomics moving beyond rare diseases and cancers is a good example of this. Allowing better prevention and management of conditions that could reduce costs and disease burden in the 10 to 20 year timeframe will require the NHS to have completed the “digitisation and integration of health and care records if the full benefits of digital medicine (earlier diagnosis, personalised care and treatment) are going to be realised”.

Whilst much of the report focused on the longer-term revolutionary technologies, there was also an acknowledgement that some data-driven technologies can and are being deployed today. Particularly, those with the aim of improving ease of access or remote monitoring, designed to reduce unplanned hospital admissions and decrease non-attendance rates. This is an area that we see many solutions being developed by the innovators of the NHS Innovation and DigitalHealth.London Accelerator programmes. Companies like Transforming Systems and Dr Doctor use data to improve access and system efficiency, and companies like Lumeon and Health Navigator helping improve individual patient pathways. Topol is also refreshingly realistic about the issues we see many innovators face because of “uneven NHS data quality, gaps in information governance and lack of expertise”. Potential enablers to overcome the barriers to adoption, he suggests, include: an information governance framework, and guidance to support the evaluation, and purchasing of AI products.

In the report, genomics, digital medicine and artificial intelligence were all seen to have a major potential impact on patient care, but it also showed how digital will help improve the lives of the NHS workforce. There was a helpful introduction to a number of emerging technologies, including low-cost sequencing technology, telemedicine, smartphone apps, biosensors for remote diagnosis and monitoring, speech recognition and automated image interpretation, that are seen to be particularly important for the healthcare workers.

Topol also finally puts to rest dated concerns that technology exists to replace people working in healthcare. The report clearly responds to this fear confirming that technology is intended to ‘augment’ healthcare professionals, rather than replace; releasing more time to care for direct patient care. Whilst, some professions will be more affected than others,Topol finds that the ‘impact on patient outcomes should in all cases be positive’.

At the HIN we have been supporting the development of the NHS workforce as a necessary part of the journey to digital transformation. I was pleased that Health Education England’s involvement in the Topol Report means that training and education will be modernised, as it is still very dated both in its methods of delivery and syllabus. However, this education should not focus solely on just educating new NHS staff members – but we should also be digitally upskilling the workforce we have now, and at every level. And herein lies the real complexity of the digital revolution. What Topol finds undeniable is that the roles of healthcare staff will change and new skills will be required, and it is good to see Health Education England responding to this challenge – although, it was shocking to learn that radiologist are still be taught how to develop traditional x-ray films, despite them rarely being used in the NHS!

Learning from previous changes, implementation will require investment in people as well as technology. It bodes well for the exciting wide-ranging programmes of the AHSNs, that support a learning environment, understand the enablers of change and create a culture of innovation. Programmes of ours like the Graduates Into Health Fast Track IM&T programme and the DigitalHealth.London NHS Digital Pioneers programme will play an important role in developing an agile and empowered workforce to facilitate the introduction of the new these new technologies. The report is clear that it is an exciting time for the NHS to benefit and capitalise on technological advances, and the AHSNs are well place to support this. The observation that ‘within 20 years, 90% of all jobs in the NHS will require some element of digital skills, illustrates the need for digital education revolution perfectly, even if it did raise the question what would the 10% be doing!

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About the author
Anna has been Commercial Director at the Health Innovation Network since July 2013. Prior to her current role Anna was the Commercial Programme Director at the London Commercial Support Unit (Commissioning Support for London, NHS London and NHS Trust Development Authority).