#PatientsIncluded “Lite”: sort of, maybe, but not really

by Carolyn Thomas    ♥   @HeartSisters

It’s fashionable these days for medical conference organizers, journal editors and researchers to boast about how “patient-focused” they are whenever they seek perspectives shared by patients with lived experience. But does boasting make it so?

Some of this patient focus has seemed a bit tepid to me. It’s as if they’re saying they want the patient voice – sort of, maybe, but not really. Here’s what I mean by that: 

 1. Academic Publishers:  At some point during the two-year adventure of writing my book, A Woman’s Guide to Living with Heart Disease, a  standard author questionnaire arrived one day from my publisher, Johns Hopkins University Press. One of the first questions was:

“Is this book based on your academic thesis?” 

(Thesis? What thesis?)

Then this question:

“Why this book? Why now? And why are YOU the person to write this book?” 

(At this point, I had to restrain my outside voice from responding: “Ahem! YOU called ME, remember?!)

The JHUP Executive Editor had approached me about the book idea because she’d been reading my Heart Sisters blog at the same time her team had made a recent editorial decision to expand their titles to non-academic authors (i.e. people without lots of letters after their names). But somehow, that decision wasn’t shared with the JHUP staff who were still sending out the same author questionnaires they’d always sent out.

2. Medical Conferences:  Lucien Engelen of Radboud University in the Netherlands coined the term and ultimate hashtag #PatientsIncluded  in 2010. He defined this as a global trend in medical conferences which specifically invite patients to join doctors “in the program, on the stage, and in the audience” – truly a seismic shift at the time, as illustrated by one unnamed physician’s clear objection:

“I spend all day in my clinic listening to patients. Why should I have to listen to patients when I go to my medical conferences?”

Happily, many medical conference organizers both endorsed and applied Engelen’s innovative #PatientsIncluded concept in practice.

The best role model, in my opinion, was Stanford University’s Dr. Larry Chu. He founded the Medicine X conferences which ran for a number of years at Stanford. I was honoured to be selected as one of 30 ePatient Scholars who applied to attend the first MedX conference in 2012. Selection was based on application criteria like “a history of patient engagement, community outreach and patient advocacy.”  Dr. Chu and his team also offered registration/travel/hotel bursaries to qualifying patients. We were treated like welcomed guests at every turn. And before we even arrived in Palo Alto, his MedX conference planning committee had included patients – an unheard-of concept until then.

One truly unique innovation at MedX (that I’m guessing originated from one of those patients on the planning committee) was a large room designated as the Patients’ Quiet Lounge, complete with soft lighting and rows of comfy recliners for rest breaks between speaker sessions. Every day, the Patients’ Quiet Lounge was profoundly helpful to me and other patients coping with assorted debilitating symptoms and long days (although I also encountered a number of physicians who had discovered the Patients’ Quiet Lounge, too – and were napping right alongside us patients). See also: “We Are All Patients. “No, You’re Not.”

Of course, not all #PatientsIncluded conferences could meet Dr. Chu’s stellar Medicine X standards.

One example of #PatientsIncluded “Lite”  happened after I was invited to be a member of a discussion panel at a Mayo Clinic medical conference on women and heart disease, three years after Stanford’s MedX started.

I was absolutely over the moon to be invited to speak at Mayo (my first time back in seven years, since I’d first been invited to attend their annual WomenHeart Science & Leadership training for patient advocates). At least, I was over the moon right up until I opened the conference program on Day One. I saw immediately that the professionals on our panel were listed by name along with a brief bio.  But I was nameless, listed on the programs merely as “Patient Representative”. 

I was stunned!  Like all of the other conference speakers, I’d been invited and confirmed months earlier. Organizers were certainly aware well in advance that I was indeed the person who would be showing up for our panel.

To some people, this may seem like a minor slight that barely matters – except that it does matter.

And I was soon to learn that my experience was not uncommon. When Toronto’s Kate Robson, for example, told me about being invited to speak at a maternal and child health conference, here’s how she described it:

“I was surprised to see that the only speakers who did NOT have their biographies included in the conference program were the patient and family representatives. 

“The organizers did not acknowledge that we should be presented and introduced in the same way as the other invited speakers. At the end, I was given a $10 gift card for my conference contribution.”

What strikes me about Kate’s story is the potential chasm between the conference organizers’ thoughtful decision to include a patient-family perspective – and the shift in attitude and policy that such a decision actually requires in real life.

And the chasm is not unique to medical conferences.

3. Medical Journal Articles:   Over the years, I’ve had four patient opinion essays published in the (truly patient-focused) British Medical Journal (BMJ*).  But when their editor-in-chief decided to elevate my most recent draft manuscript to an Editorial in BMJ-Open Heart instead of an opinion piece, I was told I’d now need to open an account with Scholar One. That’s the name of the the web-based software which the BMJ uses to handle manuscript tracking for its academic authors.

But the trouble with asking a lowly thesis-free patient who’s not an academic to open an online account with Scholar One was that I was unable to get past the first required field on their account application, which asked:

“What is the name of your institution?”

(Yes, I am in fact a lowly thesis-free and institution-free patient).

Does anybody at the BMJ  know that the patients they’re inviting to submit are essentially unable to access the required technology?  Is anybody at that journal able to amend existing forms to make them appropriate for institution-free patient partners? Making it impossible for patients to get past a required field on a required form  is essentially excluding patients entirely. Scholar One is technology that works for journal editors and the academics who submit papers to their journals. It does NOT work for regular people, and it sure doesn’t work for sick people.

I had to ask BMJ Open Heart editorial assistant Christine Janssen-Seijkens to manually stick-handle every stage of the publication process for me – all because patients don’t have institutions. (Thank you again, Christine!)

See also:  Patient advocate Carly Medosch explains why she and so many others continue to advocate for patients despite their own ongoing medical issues:  My Open Letter to #PatientsIncluded Conferences

4. Medical research:  

The Canadian Institute of Health Research (CIHR) is a federal agency responsible for funding health and medical research in Canada.  My next and final example reflects on how CIHR requests background information from the patient partners invited to participate in those research projects. This is important, by the way.  Did you know that cardiac research is  shown to be “more relevant, more applicable, and of higher quality if patients are involved in the research process?” (1)

• creation of new companies or organizations furthering the production or use of research
• development of tools, including software
• intellectual property, including patents 

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1. E. Vroonland et al. “Patient involvement in cardiovascular research: a qualitative impact evaluation”, Research Involvement and Engagement, October 14, 2019.

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See also: 

*My previous patient essays published in the BMJ (no PhD  required): 

♥ Why Physicians Must Stop Saying: “We Are All Patients“

♥  My Experience of Patient Peer Review

♥  Yet Another Cardiac Risk Calculator? 

♥ What I Wish I’d Known Before my Hospital Discharge

♥ My Editorial published in BMJ-Open Heart:  Heart Failure: it’s Finally Time to Change the F-Word

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Welcome image:  Boladenavidad, Pixabay