Thursday, 20 August 2015

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. 


  1. I shared your amazing article at I hope you come by and see my site. We have some similar ideas

  2. Thanks Patty Lee. I will read your blog.

  3. Hooooo boy! I can relate to the comprehensive examples you have listed here, Annette! I've experienced the same scenario here in B.C. (being brought in to a meeting of provincial government employees after the fact to view a slide show about patient participation - a slide show that had clearly been created by bureaucrats who hadn't been within 10 miles of an actual real live patient, produced by staff who had been flown into town and put up at expensive hotels to create it.) I was annoyed that my input as a volunteer was just a last-minute CYA move, but I was even more annoyed as a British Columbia taxpayer who is funding this little exercise. As I glanced around the table at senior staff, I recall thinking that every single person there was being paid to be there - except me.

    I'm weary of being merely a tickbox on some project organizer's #PatientIncluded checklist. I wrote more about this back in 2012 here:

  4. I tweeted your link Carolyn, to get it back out there. I have found that people love me as a method to tick those boxes. Even on a lowly workgroup that I am on there is a PR person included and given the same weight as bureaucrat and patient experts.
    A good friend was so offended when her all day meeting with an organization was facilitated by a consultant that she refuses to waste her time on them now. The authentic patient voice is hard to come by.

  5. Oh so true! I have definitely experienced some of the same. It makes the experiences where our involvement is authentic shine out.

  6. It's really refreshing to read this and see others noticing the co-option as this is something that's been concerning me and has implications for all types and elements of care including what drugs are licensed for what. You may be interested in this article (by me) examining the nature of "anecdote" as distinct from
    "Testimony" where patients are concerned.

    Finally I'd like to simply comment that "the patient voice" won't mean anything until the concept of patient voices, plural and diverse is understood. It's corporations that have one voice (that we all have to fall in line with).

    Thanks for your excellent article - Angel