Last week I trundled up to Leeds for a conference about patient data.
Hosted by Health Data Research UK, the National Institute for Health Research (NIHR) and NHS Digital it brought together patients and carers, data scientists, researchers, health professionals and managers for a discussion about the future of data-driven health research.
The conference started with a patient panel (my thanks to Molly Watt, Derek Stewart and Richard Stephens), continued with ‘patient voice’ in other sessions, included two consecutive workshops on public involvement and ended with a balloon debate that saw patient needs and priorities rise towards the sky. That’s not to mention the strong pledges on involvement and engagement that I saw in all the presentations I was lucky to see.
Even a 4 am start could not dim the sense that, for once, we may be getting somewhere. I mean, how far have we come in health data since the dismal days of care.data. A long way, that’s how far.
Leadership has been critical to this turnaround in fortunes. People like Andrew Morris, the CEO of Health Data Research UK, and Nicola Perrin at the Wellcome Trust who steered Understanding Patient Data (UPD) through its first couple of years are examples of two leaders who have embraced public involvement and engagement and whose experience of its value is and will be important in influencing others. Andrew has blogged about the conference here. And Nicola reflects on her time at UPD here. Both are worth a read.
It is a shame that this is not matched everywhere across our health research and care system. In fact my observation is that such is the lack of leadership support for public involvement in too many research organisations that they run around like headless chickens with little purpose or conviction behind what they are doing in ‘PPI.’
More often than not when asked to guide and support colleagues and public contributors the most significant problem I find my colleagues facing is a lack of support coming from higher up the food chain so to speak (and no pun intended). I think funders are getting better but many universities still seem unreconstructed. In my experience, senior leaders avoid the discussion, find lots of excuses to delay or defer or, worse still, simply go missing in action.
It would be a joke were the potential consequences not so potentially serious. After all, I suspect closer examination of the medical devices scandal would probably turn up the lack of a commitment to public involvement in governance and leadership as one of the principal fault lines in regulatory systems across the world. How long before we see other parts of our research system humbled by similar investigations?
A recent paper highlights the importance of strategic leadership in public involvement in health research systems – not just in setting a vision and context but also in mobilising and driving this vision forward through policies, practice and the necessary support.
‘Public involvement and health research system governance: a qualitative study’ by Miller et al. Health Research Policy and Systems (2018) 16:87 looks at public involvement in the UK and Alberta, Canada, health research systems and tries to distil learning from each domain.
The paper concludes with a discussion about the role of public involvement as both partner and arbiter of health research systems. It’s a view I hold too. When asked at the conference last week for a tangible action to further improve the environment for health research data I chose ensuring strong public involvement in organisational governance and leadership.
For me it is the route to better decision-making, better decisions and greater public confidence.
Have a great day.