October 15th, 2003 is a date I celebrate with my family every year, it isn’t my birthday but to me it felt like a rebirth. It was the day I received my kidney transplant. It was also the day I enlisted in my first research study. The details of the research escape me although I do recall it was a comparative study of Sirolimus and Cyclosporin and it entailed occasional blood tests and meant I stayed under the care of Manchester Royal Hospital for over a year rather that return to the care of Salford Royal Hospital. So what did I get out of it? Nothing, zip, zero, diddly-squat! No thank-you, no updates and no report of the outcomes. In the subsequent years I spent most of my time just trying to deal with the numerous health problems that arose post-transplant however I did often wonder whether the study had made any difference.
Ten years later, just prior to me enrolling as a participant in Dr Cristina Vasilica’s study, the Greater Manchester Kidney Information Network (GMKIN), I attended an information day about my underlying kidney disease, Autosomal Dominant Polycystic Kidney Disease (ADPKD). All of the speakers at the event were interesting but the one that got me thinking most about research was Professor Patricia Wilson of University College London. She was researching ADPKD and focusing on preventing the development of the cysts that ultimately destroy kidney function. To be honest I only understood a small part of her talk as it was covering cellular microbiology, not my forté, but that wasn’t the point. Here was someone devoting much of their working life passionately trying to find a cure or treatment for my condition so why shouldn’t I get involved. OK, the amount of research for ADPKD is limited but I figured that getting involved in any sort of research might help others.
Volunteering as a participant in Cristina’s GMKIN study was the first step and it remains immensely enjoyable even though the research element is now complete. Since then I’ve worked with the Health eResearch Centre in Manchester on two projects, helping to improve the presentation of lab results to kidney patients and speaking to master’s degree students on how I use information to manage my condition. I’m now working with Dr Ags Odudu to establish patient focus groups to help set renal research priorities across Greater Manchester although there appears to be a reluctance among patients to get involved: I find this strange given the universal support from patients for research and their desire to have a greater say in their care and treatment. So what are the barriers to patient involvement in research?
The barriers fall into three main areas, the first two of which I’ve alluded to in this blog.
Historically, much of the language used in research abstracts was too technical and effectively rendered patient understanding of them impossible. However, I see signs of that changing. To encourage patient involvement most research abstracts now contain a ‘lay summary’ – a plain English explanation of the purpose, structure and aims of the research study.
This is a more difficult though not impossible nut to crack. Research is governed by ethical considerations that can mean detailed communication of results or progress may be restricted or simply not allowed at all. Factor in the competitive and sometimes commercial aspects of research and you begin to understand why open communication isn’t always possible. Again, I see signs of change, largely driven by the need to involve patients in research. To maintain that involvement patients must be informed of the outcomes of the studies in which they take part regardless of whether the study is a ‘success’ or ‘failure’. I know I’ll be pushing for this level of communication transparency in any future research work in which I’m involved.
3. PATIENTS UNDERESTIMATE THEIR VALUE OR ABILITY TO CONTRIBUTE
We as patients mistakenly underestimate our value to researchers and wrongly question our ability to contribute. Recently I attended an event at the Health eResearch Centre in Manchester where I was questioned by groups of health informatics students studying for a masters degree about how I use information to manage my condition. Yes I was nervous before it started, worried that I’d have nothing of value to say – after all, I only have limited knowledge of health informatics and my formal education finished several levels lower than a masters degree! I needn’t have worried, the students were patient, attentive and receptive to my views – so much so that I’ve been invited to work with similar groups in the future. We as patients have insights that are usually denied to our doctors, nurses and researchers. We know where the gaps lie in our care and treatment and are consequently best placed to ensure that, through our involvement, research studies are better informed and focus on delivering positive outcomes for patients.
So I have a simple plea to patients; take the plunge, get actively involved in research. Come on in, the water’s fine!
** If you’d like to join our patient focus groups which are being set up for renal patients across Greater Manchester to help set research priorities then please contact Dr Ags Odudu via email@example.com or call him on 0161 306 2621 or email me via firstname.lastname@example.org
Here’s a reminder why people do research…