By Carol Rhodes
There are numerous articles about patient involvement in research. Does it have an impact on the quality of the research? The jury is still out on this question. INVOLVE’s Exploring Impact report found that there were limitations and gaps in the evidence base. Yet some strong and consistent themes emerged from the review, including that public involvement was most frequently reported to benefit the people involved as well as the research participants. I would certainly support this view.
I am a research patient support worker and my role is to bridge the gap between researchers and patients. Is there a gap? Definitely. Researchers, having studied research methods in depth, who are passionately involved in the minutia of their projects (talking the language of academia), who are interested in publishing papers and producing posters for conferences, have to work with Joe Public.
Patients come from different backgrounds, some with little education, others highly educated, both young and old. Some are typical 50-plus white middle class women, but not all. There is a diverse group of people of different educational, ethnic and cultural backgrounds, all linked by the stories they have to tell and the expertise they have gained through their own personal journey of a life changed by illness. They are not interested in dissemination in a publication they will never read, but they are interested in the patient benefit the research may produce.
Then there are the clinicians involved in the trials – doctors and consultants in a privileged position of having gained qualifications in the anatomy and workings of the human body. How can Joe Public add to the knowledge they have gained over many years of hard work and study?
Research user group members
Yes, there is a gap, sometimes a large one, but here at Keele Primary Care Centre, over the last few years all involved have attempted to bridge that gap. Researchers, patients and clinicians have learned from each other to develop a successful research user group. This has taken a lot of hard work and patience from all involved. Problems have been identified and lessons learnt. Patients bring a fresh approach to research projects. Their lack of clinical and research knowledge – their naivety – actually helps the researchers to produce paperwork, such as invitation letters and project summaries, that will easily be understood by the participants of a trial.
There is a line of thought that we should not professionalise patients, but a lone patient, on a steering group for a project or attending a conference as the patient representative, feels that gap greatly and this is where the support is needed. In order to make a worthwhile contribution to the meeting and not be undermined by the presence of professionals, patients need knowledge. They need a glossary explaining research terms in plain English with acronyms explained in full – researchers love their acronyms, patients hate them! They also need a lay summary of the main aims and objectives of the project, not a five-page proposal in research jargon. This is not as easy as it seems. It can take researchers three or four attempts to produce a one-page summary of their project in lay terms.
I love the way this role has increased my vocabulary as a layperson and my understanding of the research process.
My life was changed by illness and my career path altered. Long-term illness can be a negative experience but many patients try to find something positive to take from it. They want to share their experience to help others. Getting involved in research does this – so many of our patient group involved in research on musculoskeletal conditions adopt the phrase: ‘Anything I can do to help others, to stop them having to suffer the pain I have.’
Patients always want to see a real patient benefit. I have learned from my involvement with the many research projects conducted here that there isn’t always a patient benefit – some projects have no distinguishable results. However, others do and this is where patients’ enthusiasm can drive a project and play a large part in disseminating the results, in order to try to get them used in clinical practice. Patients dislike tokenism, they require feedback on the projects, regular updates on how their input has been used, and an explanation of how long a project can take to its completion – sometimes a period of three to five years, much longer than patients anticipate.
This all requires time – my time. Meetings with patients take time to arrange. Patients need refreshment breaks to stretch their aching joints. They also need reserved parking spaces and permits, information on the project to read in advance and meetings at times to suit their needs, not ours. Involving patients can be messy. They may veer the conversation away from the purpose of the meeting or criticise things that cannot be changed, such as validated survey questions, but conversely they can come up with questions for research that only someone who has suffered the condition would think of.
I love my job and I do think patients have a positive impact on the research projects they are involved in. It is not just the research that benefits, but researchers, clinicians, and patients benefit by working together and sharing their individual areas of expertise. We can all learn from each other. Then the results of the research influenced by patients will benefit patients – a result that everyone can be proud of.
Carol Rhodes is Patient and Public Involvement Coordinator at the Arthritis Research UK National Primary Care Centre, Keele University.
Contact: Carol Rhodes