This week I had the good fortune to be on the judging panel for the NIHR Clinical Research Networks/McPin Foundation/MQ 2018 award for service user and carer involvement in mental health research. It was a brilliant field to choose from. The winners will be announced very shortly.
One of the reasons I readily take up invitations to judge such awards – apart from the fact that I enjoy it – is that it is an excellent way of keeping up with what’s going on, the challenges and opportunities. This week was no exception.
Retention in public involvement
I am sure that I am not breaking any confidences if I say our deliberations highlighted once again the issue of ‘retention’ in public involvement. Or to put it more simply: helping people to ‘stick with it.’ Supporting service users and carers to remain involved and feel they are making a difference. Supporting researchers and research teams to remain committed to involvement. Building and maintaining relationships against an often chaotic background requires investment of many sorts by all partners: energy, passion, emotional commitment, resources, training. The list goes on. Flexibility, a sense of humanity and an underlying philosophy of mutuality, staying true to values and principles tend to mark out the best teams (and by teams I am including patients, carers and the public).
Much as we talk about public involvement being a relationship business, the actionable evidence on how such relationships can be supported and sustained is weak. I am glad that some are now ‘on the case’ so to speak – read this blog report on a recent event in Manchester by the excellent Bella Starling for instance. See also this by healthtalk.org.
As a tangent I would also encourage people to read this week’s BMJ editorial by Kristin Liabo, Nicky Britten and others on clarifying the roles of patients in research. It is a reminder that being clear about roles and setting expectations is fundamental to getting such relationships off to the right start.
Retention in clinical trials
Then there is the matter of retention of people in clinical trials as participants. I was interested to see this recent survey by Applied Clinical Trials and SCORR Marketing as reported in ‘pharmaphorum’ which pointed to retention in clinical trials being a key metric for ‘patient engagement’ by pharmaceutical companies. Yet the same survey shows that most companies are performing poorly in terms of investing in their relationship with patients. The NIHR CRN have done annual surveys on patient experience in trials for several years now and the results consistently show that relationships with staff are one of the key factors in maintaining people’s motivation to stay in a trial. My anecdotal ‘add’ to this would be that the role played by clinical research nurses in this respect continues to be underrecognised.
But enough of the anecdote. If you want to help highlight the factors that help people stay in clinical trials then you can do no better than complete the survey being run by the PRioRiTyII project here. #PRioRiTyII
Another dimension to ‘retention’ which we need to talk about is that of our staff. It is an issue I care about deeply as NIHR National Director because of the growing number of colleagues fulfilling ‘PPI’ roles across the NIHR. Passionate, committed, skilled, experienced, creative and yet sometimes regarded as curiosities in their own organisations. It reminds me a bit of when I was a ‘communications person’ (that’s what we were referred to) way back in the early ’90s. Now of course it is a brave organisation that goes into the public arena without the support of their Director of Communications. How times move on.
Being the interlocutor between organisations and patients, carers and the public, facilitating, building and maintaining relationships between partners is not an easy ask. The work is more often than not rewarding and the sense of job satisfaction very high. My neighbour who came round for a birthday drink (hers not mine) yesterday said she thought it sounded like the best sort of work in the world.
But for some the working environment is difficult. In other instances it is openly hostile. Email bounce-backs from organisations – and what they say – are an interesting indicator for me of an unhealthy churn in personnel. Some staff are not easy to deal with. Some patients, carers and members of the public are not easy to deal with. It can feel exhausting, demoralising to feel you have to beg for small scraps of money in multi-million £ institutions.
Truth be told we do not do nearly enough to support the growing number of men and women working across many health research organisations now supporting public engagement and involvement. I am very conscious of this. Recently I have been talking to PCORI and CIHR in the US and Canada – where the same issues are being faced – about whether there is something to be developed jointly. INVOLVE has a critical role to play of course. There are links to be made with what the university community is doing through the National Co-ordinating Centre for Public Engagement. Perhaps ‘PPI leads’ could begin to form themselves into a professional grouping as science press officers have done very successfully. See the work of Stempra.
Staying the course can be hard to do whatever our role in research. A more open discussion about the issues is important. We need to recognise the factors that contribute to mutually supportive relationships. An honest appraisal of what it takes to sustain these and a readiness to resource this effort is needed by funders and organisations
But in the meantime I hope you’ll be sticking with it.