{"id":37908,"date":"2016-12-01T17:00:17","date_gmt":"2016-12-01T16:00:17","guid":{"rendered":"https:\/\/blogs.bmj.com\/bmj\/?p=37908"},"modified":"2017-03-10T14:34:51","modified_gmt":"2017-03-10T13:34:51","slug":"paul-buchanan-on-being-the-token-patient","status":"publish","type":"post","link":"https:\/\/blogs.bmj.com\/bmj\/2016\/12\/01\/paul-buchanan-on-being-the-token-patient\/","title":{"rendered":"Paul Buchanan: On being the token patient"},"content":{"rendered":"

\"peb-photo-jpg\"Healthcare 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<\/a>.<\/span>“<\/span><\/p>\n

But how well does the system work? Let\u2019s take a look from a patient’s perspective. Several recent examples weeks spring to mind.<\/span><\/p>\n

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\u2026.<\/span><\/p>\n

I am a patient with diabetes and I was diagnosed with asthma many years ago, but I heard absolutely nothing from my GP or \u201cthe team.\u201d 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. <\/span><\/p>\n

Yet, I did get an email from a \u201cspecialist\u201d 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 \u201cpatient\u2019s\u201d view on the tools\u2014\u201cto add authenticity\u201d to the talk.<\/span><\/p>\n

I was also asked by academics who I\u2019ve never met to share half a dozen new research projects with the peer-support group<\/a> I run for people with diabetes, so that they could say “we consulted a patient group.”<\/span><\/p>\n

I have had international colleagues tell me of their deep frustration at being a “token patient<\/a>“<\/span>\u00a0when attending conferences\u2014only invited to be there symbolically. So if I thought this was a uniquely British issue then I have been firmly disabused of that notion.<\/span><\/p>\n

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.<\/span><\/p>\n

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\u2019d 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<\/a><\/span>\u00a0and known to the organisers\u2014is this selection bias?<\/span><\/p>\n

If we aim to empower patients, there are three prerequisites that lead to informed and empowered decision-making:<\/span><\/p>\n