Paul Buchanan: On being the token patient

peb-photo-jpgHealthcare systems have been built with hierarchies, processes, and models of engagement that are designed to distill policy, research, therapy, diagnostics, treatment, and support down to the patient. The patient and their treatment is the “end-game.

But how well does the system work? Let’s take a look from a patient’s perspective. Several recent examples weeks spring to mind.

Recently we had World Diabetes Day and World COPD Day. Arguably the two biggest non-communicable diseases on the planet, jointly responsible directly and indirectly for more deaths than all of the cancers and HIV combined, and yet….

I am a patient with diabetes and I was diagnosed with asthma many years ago, but I heard absolutely nothing from my GP or “the team.” No note, no email, no text message, no update on their website, nothing in a newsletter. No invitation to a meeting, or a peer-support group, or a show and tell at the surgery on new or updated therapies, technologies, or research into either condition. No sharing of emerging thinking on management, tips for making positive changes, or advice on how to live better with either condition.

Yet, I did get an email from a “specialist” off to deliver a conference speech on an aspect of using apps to live with diabetes, who thought it appropriate to ask, with literally a day to go before the talk, for a “patient’s” view on the tools—“to add authenticity” to the talk.

I was also asked by academics who I’ve never met to share half a dozen new research projects with the peer-support group I run for people with diabetes, so that they could say “we consulted a patient group.”

I have had international colleagues tell me of their deep frustration at being a “token patient when attending conferences—only invited to be there symbolically. So if I thought this was a uniquely British issue then I have been firmly disabused of that notion.

In this digital age of peer-support and communication, and online sharing and learning, I believe we need a societal change in attitude to the definition of and process by which we engage with patients, conduct research, and speak on their behalf.

One of the key issues for any event wishing to include patients is first to define the word patient. You have informed, not informed, empowered, and expert patients. In a perfect setting you’d have a mixture of all of them as a good representation of society, however this is not always possible and thus a choice needs to be made. More often at public or privately organised events the invited patient is empowered and known to the organisers—is this selection bias?

If we aim to empower patients, there are three prerequisites that lead to informed and empowered decision-making:

  •    Accountability
  •    Responsibility
  •    Authority

The current template used for patient engagement does not reflect the aims of empowering patients, nor does it seek to use the untapped resource that is patient experience as a driver of, and an initiator for, debate or change. So when dealing with patient engagement we are mostly talking about an empowered individual, one who is already capable of navigating the systems and confident in managing their own care. Diversity and additional inclusivity in patient representation can only benefit us all.

Then we get to the point of care. Care is teamwork. It is not only about the patient, not only the health care professionals, not only NGO’s, and not only the government defining healthcare policy. All parties have to work together. The better the communication of all those engaged in delivering care, the better the outcome for the patient. And guess what, care is organized for patients. The more patients are engaged in the organization of their care, the better they are able to understand and apply their treatment. The more patients engage, the better their health will be. The inclusion of patients across all settings and in all aspects of healthcare does pay off, not only in terms of outcomes for patients themselves, but also for the co-production of goals and real accountability between healthcare professionals and patients. The more activated the patient, the better the results across the board. There is less waste of scarce healthcare resources, less cost to the system, and more time for healthcare professionals to engage meaningfully with their patients.

So what can you do to meaningfully engage with your patient communities? Here are five tips that should make things a little easier, if not get in touch and I’ll be happy help.

  1.    Research the structures of the network of patients with the pathophysiology you wish to tackle.
  2.    Co-design with the patient community from the start.
  3.    Use patients as Key Opinion Leaders.
  4.    Connect with patients and their networks.
  5.    Have patients as peers in all aspects from design to organisation and delivery.

Patients are the starting point not the end-goal. Research, events, policy, therapy, and care options that aren’t predicated on making substantive and measurable improvements to the material circumstances of our lives aren’t in our interest.

Paul Buchanan is a patient with Type 1 diabetes. He runs Team Blood Glucose. He is part of The BMJ‘s patient panel.

Competing interests: None declared.

Acknowledgement: Thank you to Margot Vanfleteren for her input into this piece.