Anya de Iongh: Making patient co-production meaningful and impactful

Last week saw the annual meeting of The BMJ’s Patient Panel—an international meeting across at least four continents via plane, car, train, and phone to discuss The BMJ’s partnership with patients.

Since 2014, the panel has brought together international patients, advocates, and leaders in the field of people’s (patients or carers) experience, involvement, engagement, and campaigns to drive The BMJ‘s patient partnership strategy. The meeting was a chance to get updated on the progress over the past year, discuss our purpose as a panel, and think about new opportunities to improve the partnership with patients across everything The BMJ does.

It was wonderful to see so many inspiring people around the table, but the absence of the much-missed, late patient editor, Rosamund Snow was felt by all. The contributions she made and the impact of her work with Tessa Richards, patient partnership editor, cannot be underestimated, and it is so important to us, as a community of people and patients to maintain and build on all of their outstanding achievements.

It was also my first chance to meet the panel in my new role as a patient editor. The panel are a daunting collection of incredible people, so as well as noting all the excellent points, I wanted to pick up what made the panel a worthwhile investment of their time. For one, being around a table like this is motivating and stimulating for all of us, but secondly it provides the chance to connect in what can sometimes feel like isolating roles in our day-to-day lives. These restorative connections are not just a “nice to have” but underpin what enables us to work “remotely” as a panel for the rest of the year.

One of the interesting themes that came through the conversations was around quality and quantity. We often aspire to co-production as the gold standard for working with people (patients and carers), but the reality is that sometimes other ways of working are more suitable, appropriate, and impactful. Making my work “meaningful and impactful” have been personal drivers for me, but I feel all too real the tension between this and aspirations for co-production. Significant progress has been made towards the targets around quantity of patient input into copy in The BMJ. Our conversation as a panel took us back to basics, about what we are trying to achieve. From my insight, this is two fold: firstly shaping the conversation to reflect what is important to people receiving medical care (patients/carers/families); and secondly to demonstrate how to do this, leading by example and practising what we preach.

From previous experience, finding the most appropriate way to meet these aims is half the challenge!

As a peer review journal, the role of patient reviewers was a big topic. Interestingly, the comments that were made about improving the patient reviewer journey were very similar to things that can improve the experience of peer reviewing for professionals too. I often see this duality in other areas, unsurprisingly, since we are all humans at the end of the day. Those of us who have done peer reviews before often find ourselves repeating the same themes around language. The subtleties of language can undermine all other efforts to be person-centred, with the usual suspects like “adherence” but a more general tone giving away a bio-medical dominance. Another angle of the discussion on peer review was around recognition. Peer review is often done by professionals as part of their professional responsibility, but how are patients rewarded and supported for their contributions? We have a citizen responsibility, yes, but so much is already asked of us under that guise.

Along with patient peer review and all other topics discussed, the most difficult questions that were asked were around the impact of our work—as peer reviewers, authors, or as a panel. We know it’s the right thing to do, we have a gut feeling it helps, and all the feedback from editors is positive. But can we really measure the impact of what we do?

This question haunts many of us working in unquantifiable ways around empowerment and engagement. We can feel an intrinsic impact ourselves which gives us satisfaction and motivation, but often it’s hard to find more to justify the impact of what we do and the resources it takes. In order to have some impact, we need to focus, which means prioritising, and the inevitable introduction of a dreaded word… process. The challenge is to keep the process proportionate and purposeful, without creating an industry around it.

As ever with partnerships, there were uncomfortable moments, but an open environment to share concerns and ideas meant it strengthened our shared passion for just how important this work is. I am really excited by the potential of the panel and the partnership at The BMJ, and am looking forward to working with my patient editorial colleagues to do the panel, and our communities proud.

Anya de Iongh, patient editor, The BMJ. Twitter: @BMJPatientEd

Competing interests: Full details here.