The SPCR recently hosted 6 workshops to promote patient and public involvement in the early stages of study design, to support potential FR15 and 16 funding bids. One such workshop titled 'Clinical trials- online recruitment and electronic health records' was led by Dr Caroline Clarke, who has written about what she learned on the day.
Dr Caroline S Clarke, Primary Care and Population Health, UCL
I have been working in clinical trials for a while now, in a former life as a proofreader of reports of clinical trials for big pharma clients, and now in my health economics career back in academia. My main role in clinical trials these days is as the trial health economist, through Priment Clinical Trials Unit and other UCL collaborators. As a non-clinician member of the core trial team, I have only ever met two or three patients who are involved in our trials, and they are those who sit with me on trial strategy groups.
This public involvement workshop organised by the SPCR was therefore a completely new thing for me. We had had some talks recently in the department which highlighted how important it is to properly include patient and public considerations in study design and funding applications. Colleagues at these talks saying how much they and their work had gained from patient and public collaboration on their studies inspired me. I am applying for funding to run my first clinical trial, with others from my department including our health economics team lead, Rachael Hunter, so when the email came round about the possibility of including our project in a patient and public involvement event organised by the SPCR, I jumped at it.
I submitted a 2-page proposal, encouraged colleagues to support the inclusion of our work in the event, and was very pleased when it was included. Then the questions came into my mind – what is this event going to be like? How will it be run, who will run it (is it me?)? How should I prepare – do I make slides? What will be expected by the public contributors, by the researchers, by the organisers? Will it be ok? I took all these questions to the SPCR’s Involvement Officer, and they were extremely patient and helpful. They emphasised that there is always lots to talk about at this type of session, so I should come armed with the reasons why I want to do the study, some questions I would like discussed, and an open mind. The main piece of advice was to let the discussion take its course, with light-touch guidance if we go too far off topic.
I hope that the event reinforced the idea that patient and public contributions to research ... are truly valued and valuable
On the day itself, we were four researchers (including me), and three public contributors, two of whom I had previously been in touch with via the NIHR’s People in Research website. It was a very enjoyable and interesting day, and I took copious notes. We covered everything that I had wanted to, and a lot more besides (this was where the nuggets appeared), and everyone seemed very happy at the end of the day. I came away with promises to make a public-friendly version of the study flowchart (thanks, Karen!) and lots of ideas about various topics, including:
- the accessibility of language;
- the impact of different types of wording;
- the importance of feeling appreciated and connected, for example through something as simple as having my photo on the study website;
- the importance of being in control over what is known about you, how, and by whom;
- what are the reasons why healthy people might take part in research; and
- how to find members of the public for involvement in and recruitment to the type of study that I am hoping to run.
For my part, I hope that the event reinforced the idea that patient and public contributions to research scoping, designing, planning, conducting, analysing and presenting research are truly valued and valuable. I feel more confident now in delivering the work that I hope to do (fingers crossed for funding), and I am confident that my research methods and output have benefited and will continue to benefit from the discussions we had. Thanks very much to all the attendees for your time, humour and wisdom, and for saying that you liked my and Rachael’s ideas, and I hope very much that they can be taken forward!
You can read about Eric Deeson's experiences of attending this workshop as a public contributor here.