Patients’ priorities matter, but what happens if you have two opposite groups of patients?

Published: 03 March 2016

By Leanne Metcalf, JLA Adviser.

I have been working as a JLA Adviser since 2013 and in that time I have been involved in thirteen different PSPs, either chairing them or helping to facilitate their final workshops. One of the PSPs I have chaired more recently is the Kidney Transplant PSP.

As a huge advocate for the JLA method, I have always been passionate about patient involvement in research generally, having worked for medical research charities for ten years and then being appointed as a JLA Adviser. My ability to align the views of patients and clinicians (and researchers) has been tried-and-tested during my career. However, I found myself in unchartered waters on the 3rd February when I realised that I was faced with the task of aligning the views of respected clinicians with two equally important groups of patients, but whose perspectives of kidney transplantation were based on completely opposite experiences – those of living donors and those of transplant recipients.

About a third of all kidney transplants carried out in the UK are from living donors. Living donation can offer an alternative to waiting on the national transplant waiting list for an organ from a deceased donor but like retrieving organs from a deceased donor, it does mean carrying out major surgery. However, results are successful.

The JLA has been asking patients, carers and clinicians which research needs to be carried out for over 10 years. But I had never before witnessed the exchange of perspectives of two sets of patients who were both equally fundamental to the topic of a PSP – those donating kidneys and those receiving them.

For the most part, the conversations taking place during the workshop were what I would expect: recounting personal experiences, considering the value of short-term versus long-term research, weighing up the scale of any potential impact, dealing with technical issues, and so on. Listening to the emotional recollections of those whose lives had been altered so profoundly because of facilitating a medical intervention rather than benefiting from or experiencing one however was new to me, and I wondered if it was going to place a different pressure on the JLA method for the final workshop and on me as chair and facilitator.

How would I begin to reconcile the psychological and physical impact on a living donor and the research they would like to see carried out, with the complementary impact of a kidney transplant on a transplant recipient, and their associated research priorities? Well it turns out you do it in exactly the same way as the JLA method suggests! And so it is of no surprise that the JLA process has been proven time after time for a variety of different healthcare areas. After all, it is the same as trying to align the viewpoints of clinicians carrying out a medical intervention to the viewpoints of those receiving one as patients. You do it through respectful discussion, a democratic exchange of views, diplomatic ranking exercises, and experienced facilitation.

And so by 4pm, we ended up with a shared top ten list of priorities for kidney transplant research that equally reflected the priorities of kidney patients, living donors and healthcare professionals, and a portfolio of research questions that encompassed the various dimensions of the kidney transplant process. Now comes the hard part of influencing researchers and research funders to take these priorities forward.

So what did I learn from that day? Not to listen to my intuition telling me that we couldn’t possibly reconcile these divergent views on kidney transplantation! And that any sceptics of the JLA process should be countered by the results of this PSP, showing that even completely opposite experiences and insights can be brought together in a way that will ultimately influence the research agenda and reduce research waste. Which bodes well for one of the other PSPs I am chairing on Blood Donation and Blood Transfusion…!

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