Optimised Academic Health Alliances are characterised by the pursuit of research and educational agendas that reflect societal need. Understanding what matters to people relies upon public and patient involvement and engagement and in this article Simon Denegri describes the dawning realisation that these activities are integral to better health science - Professor Sir John Tooke
Health research organisations should embrace public involvement and engagement as a way of doing better research
The life sciences sector is well-versed in responding to the latest advances in scientific knowledge and understanding.
From personalised medicine to artificial intelligence the sector has shown itself adept at seizing the moment. Collaborations are formed, decision-makers lobbied, funding sought, initiatives launched, papers written. Increasingly this story is ending with good examples of the implementation of research in terms of new treatment, changes in practice or new policy thinking. Those impacts are worth their weight in new funding from Governments and other funders who have rising expectations for their investment.
However, there is one ‘revolution’ in health research – the rise of the ‘patient voice’ or public engagement and involvement - where the sector’s response has been far less certain. Patients, carers and the public are asserting their rights in research worldwide both as individuals and communities. They are contesting the traditional view that sees them as ‘human subjects’ to be prodded and probed in the name of science. They want a new relationship with researchers; one in which they are seen as full partners in the process by which research is prioritised, designed, deliverered and disseminated. ‘Nothing about us, without us’ is their shout. And rightly so (1).
From South Korea to Brazil, health research systems and their leaders are now grappling with the question of how to respond appropriately to this challenge. And you don’t have to dig too deep to uncover considerable nervousness – a hardening of hierarchies, the closing of doors. After all, moving towards a vision in which health research is increasingly done ‘with’ and ‘by’ patients, carers and the public rather than ‘about’ or ‘to’ them (the definition of public involvement as set out by INVOLVE in 1996)(2) marks a significant culture change.
Some nations or sub-national regions such as the UK (3) and Western Australia are well-advanced in this transformation. But even where there is considerable buy-in to the idea, expectations of what it might mean and deliver can vary widely across different stakeholder groups (4). Misapprehensions as to why the public wish to be part of research often loom largest. Yet all the evidence points to a positive and altruistic motivation behind their involvement: a desire to improve care and treatment now and in the future for those with a similar lived experience of their condition.
Aligning around a clear mission and purpose for involving and engaging people is therefore critical for any organisation or sector wishing to develop a strategy for involving people. It is the first step towards the development of a mutually respective community of partners in which public involvement and engagement are seen as adding value to research and increasing its impact on society in terms of health and wealth (5). It is therefore disappointing how many institutions fail to adequately involve patients, carers and the public at this earliest stage of strategic planning thereby undermining whatever comes next.
On my travels I am always fascinated by how much the practicalities of implementing public engagement and involvement weigh heavily on Boards and the leaders of organisations. Only last week I was in Vancouver where many of the questions were around governance, reimbursement and diversity. Understandably so. These are good questions and the answers are not always straightforward. The good news is that there is now much help at hand and a wealth of information available.
There are the resources and expertise of the aforementioned INVOLVE and others mentioned in this article. The promise of useful connections via the new ‘International network for patient and public involvement and engagement in health and social care research’ launched in November 2017 and which now boasts 200 members (6). Public engagement and involvement in health research also now has its own academic journal (Research Involvement and Engagement published by BioMedCentral https://researchinvolvement.biomedcentral.com/) and high impact journals like the BMJ are covering the issues in greater depth and breadth. Just this week ‘Nature’ published a special feature on co-production (7). Through these channels and others the evidence base for how best to conduct patient and public involvement and engagement will grow and add a further stimulus to its promulgation.
Globally this feels like a transformational moment in the relationship between research and its many publics and certainly embracing public engagement and involvement can be a very powerful movement and motivator for organisations and their partners as the work of NIHR in the UK, PCORI in the United States and the development of the SPOR (Support for Patient Orientated Research) Units in Canada demonstrates.
The challenges of making it happen are not to be dismissed lightly. But the tipping point often comes from the realisation that patients, carers and the public are not here to ply a certain dogma but to help develop better research. To quote one such UK public contributor: ‘I think people have recognised that I’m not in conflict with them. I’m not trying to change them, I’m just trying to add a different viewpoint.’ From this can only stem a revolution to benefit us all.
(1) 'Patients' rights and roles in research.' BMJ editorial
(2) INVOLVE, 1996, http://www.invo.org.uk/find-out-more/what-is-public-involvement-in-research-2/
(3) Reviewing progress in public involvement in NIHR research: developing and implementing a new vision for the future.' https://bmjopen.bmj.com/content/8/7/e17124
(4) 'What do stakeholders expect from public engagement?' Health Expectations: https://onlinelibrary.wiley.com/doi/abs/10.1111/hex.12797
(5) The Lancet, Volume 389, No. 10073, p1006–1007, 11 March 2017 ‘What are funders doing to minimise waste in research?’ https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(17)30657-8/fulltext
(6) Cochrane Consumer Network website: https://consumers.cochrane.org/news/international_network
(7) ‘Co-production of research,’ Nature, 3rd October, https://www.nature.com/collections/nnqkvntryl
‘The impact of the Alzheimer’s Society Research Network,’ Alzheimer’s Society, March 2018, https://www.alzheimers.org.uk/research/our-research/patient-and-public-involvement/research-network
About the author
Simon Denegri, OBE, is the National Institute for Health Research (NIHR) National Director for Patients, Carers and the Public. He blogs regularly at http://simondenegri.com/