The Authentic Patient Voice

The language of patient engagement is starting to concern me. On Twitter #PatientsIncluded is the only patient hashtag that has not been taken and 'professionalized' by hospitals and institutions as their own. 

Patient Experience, Patient Engagement, Patient Relations - all those terms have been turned into hospital silos of professionalism. If you want to call yourself a Patient Navigator you'd better think again. You might be confused with hospital or health system navigators. How about Patient Advocate? - Nope, it's taken. (see below)

"The Department of Patient Advocacy is made up of professionals from various health care backgrounds who possess a wide range of skills and expertise." from a hospital website

"If you are in an Ontario public hospital, you will have access to an in-hospital Patient Advocate through the Patient Relations Department."

If you are a patient then, one who is active and engaged, you don't actually have any term that you can apply to yourself which has not been appropriated. How can patients form a culture when every new term they apply to themselves is quickly co-opted?

There are books to help these professionals too, for example...

A Patient-Centered Approach to Handling Complaints and Grievances... to assist Patient Advocates in managing grievances and complaints more effectively in their organizations.

And courses

"Recognize and understand the key concepts for gathering and using patient experience to design health care improvements"

Keep the term "using patient experience" in mind.

Just last week I saw mid stream results from a project I was involved in. Patients and caregivers did in depth phone interviews including creative pictures to make points about the good and bad in a healthcare issue. A few weeks later the consulting company invited 'selected interviewees' to come in for the final two hours of what had been a day long work group. The consultants, along with their clients, had taken the consultant-chosen ideas and insights and made them into prototypes of solutions. The people who arrived late in the day saw the proposed ideas and were asked for input which the presenters tried to include in presentations immediately after.

As we left we were told that we would see these new initiatives in October, and we would likely recognize our input. It was unsatisfying that they used our ideas to create their version of the patient/caregiver experience, and will be able say "Of course we had patient/caregiver input."

This is not an isolated issue. In a Tweetchat my comment that I am a "third cousin twice removed" of the healthcare system got a large response. It's funny, but the truth in it was what made people laugh.

With PaCER patients are fully engaged in all stages of research

Despite my complaints there are exceptions where there is enthusiasm for the patient movement and the authentic patient voice - The PaCER course in Calgary, which now has a satellite in Ontario is one of those, and I couldn't have asked for more enthusiasm than I received when I contacted the Ontario SPOR Support Unit. 

What I am ranting about is the way in which patients are being streamed into advisory sub committees, the way we are being used as tokens and to help tick off the right box, and the way that the large "disease organizations" have corporatized our voices.

Where is the attitude that patients are part of the team in healthcare, that we are partners? Why are we always asked to participate inside a pre-determined frame?
When will we see co-design of new policies, and ultimately co-production?

Could this be connected to the embarrassing fact that patients can work as hard as anyone else in the health professions, and yet they are the only ones at the table with no badge, and who are not being rewarded for their efforts? Some are quite willing to volunteer indefinitely, and enjoy the process, and yet they still have to make their own way to learn what they need to know.

There are no development courses for patients who want to be active influencers. There are few conferences where they can make connections and learn about up-to-date research, not to mention the lack of access to medical journals that are behind paywalls. The whole health infrastructure is supported by patients as the major stakeholders and yet it is difficult for us to access enough information to fully participate.

We need to support the journey from passive patient to patient leader.