Monopolising What Is Valued

Pritpal S Tamber

August 29, 2018

How research and medical journals further the disconnect between health care systems and the people they purport to serve

Statutory systems are struggling to understand people’s lived realities. This belief has fueled our work from the beginning and it’s why we believe that what’s needed is a new way of working, one that acknowledges the importance of, and seeks to establish, a deeper connection between systems and communities.

But how is it that people in systems have become so disconnected from the people they purport to serve? One way, I believe, is through the monopolising of what is valued.

There was a clear example of that this week in The Lancet. The esteemed medical journal published a study that showed that when people are discharged from a mental health crisis team, they fare better when they’re supported by a peer. The idea of ‘better’ – ie what was valued – was defined as being less likely to be readmitted.

This is a system-defined idea of ‘value’.

I recall seeing some work from Toronto in which a primary care team spent time with people with multiple conditions and asked them what mattered. One of the things they said was having the option to be admitted. For them, it was a relief to know the option was there when things got bad. They were horrified to hear the health care system was looking to reduce admissions.

The study in The Lancet concludes that peer support had some benefit but the results were weak. What the authors mean is that peer support offers some value to the system. But what of the other types of value that the work created? As Dr Anjali Taneja of Casa de Salud in New Mexico, USA, said over Twitter, “so much of peer recovery work is about relationships, accountability [and] trust”. Were these measured? Not according to what was reported in the study.

Dr Taneja goes on to share how her work using community health workers (CHWs) was deemed as “unsuccessful” by evaluators and yet, as she says, “it wasn’t the CHWs’ jobs to reduce hospital admissions, they weren’t given resources to do so nor were they asked to do so! [T]hey were bettering the lives of folks”.

Bettering the lives of folks. That’s not always the same as what the health care system thinks is better. These definitions of ‘better’ need to be debated ahead of research being conducted. In my experience, they rarely are, and so, by monopolising what ‘better’ is, systems – including research and esteemed medical journals – become increasingly disconnected from the people they purport to serve.

As Clare Wightman of Grapevine (and a member of our Steering Group) suggested on Twitter, ultimately it’s about power.

With regards to our work, we’re recalibrating what we want to do. The Steering Group is getting into a room on September 26th to make sense of what we’ve learnt and refine our focus. Yes, it’s about parity, trust and an equal voice for all (as we say in our vision) but it’s time we got more clear about the ‘it’.

More on that in a month.

Pritpal S Tamber

I’m a doctor who trained as a medical editor and publisher and now researches and consults on the link between community power and health equity. My interest in community power started when I was the Physician Editor of TEDMED and is explained in My Perspective. I also work as a freelance medical editor and publisher for organisations that want to write high-quality articles and a strategy for their publishing and promotion. Find out more on my About page.

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