Setting out my stall: it is the difference involvement makes that matters

Welcome to my blog Involvement Matters. For this, my first post, I will set out my stall, so to speak. I decided on the name for the blog a long time ago for what seemed like obvious reasons. I want to write about matters pertaining to the involvement of the public (my preferred shorthand and perhaps the subject of a future post) in health and social care research because, well, involvement matters. It matters to me very much but it also matters in the general way of things. And involvement doesn’t just matter in health and social care research. It matters in anything where the voice of people affected by something can be heard and acted on to improve whatever it is focused on. Which brings me to my initial theme and one that will endure in future posts. What matters most in involvement is that it makes a difference. My interest is in that difference being to the way research is planned, conducted, communicated and implemented to improve the health and wellbeing of people (more of this is set out in an interview I did for Healthtalk online published in 2016).

The involvement of patients and the public, and the many different ways it and those involved are referred to, has been a growing theme in my working life for more than twenty years. It started with a simple awareness as a Regional NHS R&D Manager in the early 1990s that Consumers in NHS Research, as NIHR-INVOVLE started off, had been set up by the NHS’s first Director of Research Sir Michael Pekham. And now it is the entire focus of what I do, both as part-time Public Involvement Lead for the Health Research Authority (HRA) and as a public contributor in my own right to the work of a number of organisations that fund and manage research and research teams.

I have seen a great deal change in involvement in the last twenty or so years and I firmly believe that we are getting close to the tipping point needed for it to become usual practice in all health and social care research and not just that which directly recruits people or their samples or data. I am excited by the huge and increasing amount of activity both in the UK and internationally to that end. And I am excited that at [very] long last there is an increasing focus on the difference that involvement can make and the part it can play in the design and delivery of the highest quality research. After having whined on about it as a member of INVOLVE for many years I am delighted that we now have a draft set of national standards for involvement and that an increasing number of organisations that fund and manage research are taking it seriously because of the part it can play in delivering the highest quality research.

For all the exciting progress over the last year or two, there is still some way to go before involvement actually becomes usual practice of course. And that brings me to my central theme and the related things that keep me motivated to play my part, however small, in helping involvement become the norm. I have long been frustrated by the focus on the process of involvement rather than the difference it makes. My work at the HRA has given me the opportunity to see what researchers think and write about involvement when they apply for approval from an NHS Research Ethics Committee (see Researchers are missing a trick with public involvement). The vast majority write about who they have involved, sometimes by name as if a REC will know who Mrs Doris Trellis of Builth Wells is, or what they did but very rarely how the proposed research was shaped by what the people they involved told them. All too often a REC will be concerned about things that have been influenced or changed as a result of involvement, commonly the participant information, but they are not told why. In the absence of that assurance the poor researcher can end up being told to change it back. The question on the form does not help to prompt researchers to tell a REC anything that will actually be useful but equally there is something of a culture of box ticking where researchers try to write a few impressive phases. The HRA is addressing this now and will soon issue simple guidance to help researchers to help themselves to help the REC.

What is needed to tip the balance in favour of involvement becoming usual practice is simple evidence of how it helps to make research better in ways that encourage the research community to just do it. There is good published evidence of the ways in which involvement can help (see HRA / INVOLVE evidence briefing as an example of the ways involvement can make research more ethical) but still a strong push for more. Many of the sceptics say show me that it works and I’ll do it. So we, the involvement community, need to gather that evidence systematically and focus it on the difference it makes. The HRA’s initiative to make involvement more useful to RECs for ethical review should make it easier to get ethical approval. In turn that should mean studies can start sooner, the results be reached more quickly and ultimately any benefit to patients, which is why the research is being done, should be achieved sooner. We need a movement of people committed to the benefits of involvement to continually record the difference it makes and to pass that on to others who may need persuading. Without that the change needed will not happen because the sceptics can bat it away as not having been shown to help.

Finally there is a simple message that I try to pass on whenever I get the opportunity. With the evidence that already exists it is no longer a case of why would you involve the public but why wouldn’t you when it has so many potential benefits? After all what has anyone got to lose by trying it? So, just do it, but remember to record the difference it makes because that matters too.

Jim Elliott
Advocate for patients in health and social care research
@drakesyard

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