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