Activism and new ways of getting input from a much wider range of patients and communities are needed to advance patient and public partnership in health systems

As The BMJ’s patient partnership editor I meet many patients and carers on a quest to improve health systems. The time and energy they invest is often humbling. Their advocacy usually stems from harrowing personal experience. For Margaret Murphy, the avoidable loss of her son, for Kelly Young, a life disrupted by poorly controlled rheumatoid arthritis. The spur for Marc Bains was going into heart failure at 23. Most acquire advocacy and leadership skills “on the hoof.” There are very few training schemes for the varied roles patient advocates take on. And while a few tread the boards as keynote speakers at conferences, most forge on largely unsung, and unpaid.

Last week The BMJ‘s international patient advisory panel, all of whom are patient advocates and most of whom fit the (loosely defined) criteria of patient leader, met to discuss progress and challenges with implementing the journal’s patient and public partnership strategy; a strategy which is now being extended across the company’s portfolio of specialist journals. UK based panel members joined us in BMA House, but we held the meeting as webinar for most were participating remotely.

Exchange between panel members and BMJ staff is by no means confined to annual meetings. We “talk” on a weekly basis via a dedicated google group in which news, views and ideas are shared. Panel members get free access to The BMJ and discussion is often extended as well as fuelled by the many articles we publish of interest and importance to patients worldwide. 

This year panel members flagged encouraging progress with initiatives to promote patient partnership and shared decision making in their own settings. But they also expressed frustration about the difficulty of establishing new ways of working, and changing long standing cultural mores. Overloaded health systems and agenda swayed by short term political interests add to the slow pace of change.

But, as some of our panel members pointed out, healthcare institutions are now thinking strategically about patient and public involvement. Growing involvement of patients as teachers in undergraduate medical education and strides being made towards co-production of research were also reported. The adoption of charters of patients rights provide grounds for optimism for others. So too does the move to appoint a small handful of Patient Directors in NHS Trusts. Front runner David Gilbert’s blog posts from the cutting edge of this development speak volumes. 

A debate on the future direction patient leadership was kick started by a short pre recorded video clip from Sara Riggare and Tamas Bereczky. Sara, who has just held a conference for “Spetspatients” (lead patients) in Stockholm said that the work of patient leaders “is neither well recognised nor valued.” And the lack of remuneration “reinforces the view that their work is not as important as that undertaken by health professionals.” 

Tamas, who has recently completed his thesis on patient leadership called for a new approach to patient advocacy.

Patient organisations are not ideally placed to lead change, he said. “They have had to turn themselves into corporate entities to obtain funding.” Those who head them tend to lose sight of the concerns of “ordinary” patients. Furthermore, disease based patient organisations replicate the siloed approach to health taken by healthcare professionals. Co production of health and partnership working is better driven by advocates working in more informal network, they agreed.  A model redolent of “guerrillas in the jungle” suggested Dave deBronkart, where people unite with a common purpose coming together and teach each other new skills and methods of advancing a social movement. 

Mark Taylor, agreed that it’s easy for patient advocates to become part of the system if they stay in position too long. The challenge of getting “representative voices” rather than “professionalised patients” views heard is one that patient leaders, must rise to, said Emma Kinloch. And being an effective spokesperson for a large community requires, time, skill and effort. Cristin Lind said that facilitating partnership was another core skill of patient leaders and one which deserves wider recognition. 

Getting representative voices “round the table” is not easy. 

“But why should this be something that patient leaders have to do?” asked Charlotte Augst, “we don’t ask the managers and health professionals round the table to be representative.” It’s up to health systems to get better at collecting the experience of wide communities of patients and carers and to use this information to inform their decision making. Listening to those who have the worst outcomes, is particularly important, she said. Currently our systems allow only a certain type of person [white, educated middle class] to be in positions of influence. 

Angela Coulter was unconvinced that setting up training courses is the way to advance patient leadership. “As a patient,” she said, “I have very different needs at different times.” NHS trusts already employ many people who support patients and act as advocates for them in multiple different roles. She did, however, agree that there is an argument for some paid patient leaders. Helen Haskell, wanted patient leaders to play a more active part in drawing public attention to deep seated structural problems in healthcare, not least that of unsafe care. 

One of  many challenges for health professionals, Rakhal Gaitonde suggested, was that as government employees they have to fulfill goals set by health systems rather than by patient communities. Weighing in a day late Cecilia Rodriguez referred to other challenges. 

“When we last spoke, I couldn’t imagine things were going to change so much in my country [Chile] …but I’m still dreaming of a more fair and equitable health system” But she had positive news to report too, about a joint initiative she is co leading with health professionals at the University of Santiago to open a “patient school,”  to sit alongside the university’s medical and nursing schools. 

Reflecting on this year’s meeting, one take home message for me was that the patient revolution is not only alive and well, but also truly global.

Tessa Richards, The BMJ. You can follow her on Twitter @tessajlrichards

Competing interests: None declared.