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Patient Diversity, Part 1: The Hidden Patient | ChroniCarly

Recent articles have brought attention to lack of diverse of patient voices heard at popular medical conferences. A Rock Health article (widely re-posted among epatients) points out the low numbers of female speakers: “Women’s voices largely missing from healthcare conferences.” Caroyln Thomas wrote “”We are all patients.’ No, you’re not.'” with the knock-out quote from e-Patient Dave:

“People need to remember that although I advocate FOR listening to patients, I myself am only one – and I was only sick for six months. Every time there’s a patient panel, the audience experience broadens and improves – but I should never be the sole patient voice.”

This is a huge issue with more complexity than you might assume at first glance. I think it would be best to try to break out some small chunks in individual posts. Undoubtedly, I will miss some, but I welcome your comments.

Rock Health did a great job highlighting the lack of female speakers at medical conferences. In 2013 MedX topped the list with 38% of speakers identified as female alongside 62% of speakers identified as male. 38% is the best we got in 2013!

In an effort to correct this problem, the article includes a link to a Google document where women interested in speaking can enter their information. The second field of this spreadsheet stopped me in my tracks: title. The list was full of presidents, CEOs, authors, founders, etc. Immediately my inner voice said, “I’m just a patient, I guess they don’t want me…”

As I scrolled through the list, I saw women I recognized. Women I knew as patients first. But in their bios they were not identified as patients. Instead, they were the same authors, and founders mentioned above. Most of the photos showed women confidently posing in suit jackets. What happened to the patients? In my mind, actual experience as a patient should be treated as a credential, not unlike earning a professional certificate. Why would the patient attribute not be mentioned once in the speaker’s information?

I’m calling this phenomenon “the hidden patient.” This doesn’t just happen with the grassroots patient advocates, either. Society for Participatory Medicine (S4PM) member Casey Quinlan recently pointed out a conference with 3 older, white, male, non-patient headliners. I noticed that one speaker was Michael Graves, who is very much a patient in my mind. Except his short bio didn’t mention that at all, just traditional professional credentials. Additionally, his bio head shot was very closely cropped so casual viewers would not notice his wheelchair. I might be more understanding if this was a design or architecture conference, but it was a medical conference! Wouldn’t it make sense to explain, even briefly that Mr. Graves’ own experiences as a patient were what inspired his innovative line of medical and hospital products? Wouldn’t it be awesome if this famous man would be able to proudly proclaim his patient status to help reduce the stigma patients face?

There can be many reasons why people would choose not to identify themselves as a patient. Having faced serious professional discrimination (in non-healthcare fields), I can sympathize with not wanting to disclose that you are a patient. I think identifying as a patient (and when) should be up to the individual and have had many enlightening conversations recently about the need to expand the definition to allow all types of patients to participate. However, it is disappointing to see people who identify as a patient, and participate actively in patient communities, but obscure that status in favor of more “professional” mainstream titles and bios. I think there are many people out there who would be more willing to advertise themselves as a patient if the environment were more welcoming to patients. It’s a tough situation – while the majority choose not to disclose their status, it creates the false impression that there aren’t that many patients out there doing professional-level advocacy work. The more patients we see, the more comfortable others will be stepping forward and “owning” their status.

Hopefully more exposure will make it easier on event-planners and the media to find patient voices to promote. HL7 Standards asks if 2014 will be the Year Patient Stories Come to More Healthcare Conferences. “Patients included” conferences are becoming more popular, with some experts such as Susannah Fox insisting on this qualification for events she attends. The Socitey for Participatory Medicine posted the “manifesto” insisting that patients be included, using the popular phrase, “nothing about us without us.” How can we bemoan the fact that patients are being left out if we choose not to tell people when we identify as patients?

This is a tough choice that each person must make, and their decision to identify can change many times throughout the course and circumstances of their lives. Please consider how you present yourself and why you choose to publicly identify as a patient or not. If you are comfortable identifying as a patient, add that to your short bio. We can’t share our voices if we stay hidden.

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4 Responses to Patient Diversity, Part 1: The Hidden Patient

  1. Agree completely, Carly. A speaker’s patient status is indeed a bona fide credential when participating in any health-related event. In fact, when I read a speaker’s bio, I specifically look for what experience “in the trenches” – if any – is listed. For example, I casually scanned a recent article on patient engagement UNTIL I came across a small throwaway line about the author’s own experience living with Parkinson’s. Whoah – back to the top for a re-read . . .

    Reluctance to include this info in healthcare circles is like a priest doing marriage counselling, or a childless therapist doling out parenting advice. They may have the framed credentials on the wall, but they sure can’t claim the street cred.

    We may not and should not feel compelled to out our every diagnosis in public, but when writing/speaking about healthcare, that insider’s perspective must be front and centre to enhance credibility.

    • Carly says:

      I really hope that if patients become more important in 2014, those of us who (at least sometimes) identify as patients can begin to get comfortable with the habit of SAYING that we are patients. It might not be important to other CEOs, but you’re right it will lead to more credibility and interest to patients and advocacy groups.

  2. wow Carly, this stopped me in my tracks. The thoughts you have expressed so eloquently have been swirling around in my mind for some time now. I too saw that list of potential speakers and thought just as you did. What I hadn’t thought about until you pointed it out in this excellent blog is the concept of the hidden patient. That’s really given me something to think about. I also have been thinking for some time now about how conferences invite the same speakers time and again and I wonder if their story, being so well known and repeated has diluted the impact it first had. Not to take away from speakers like ePatient Dave who has done so much to bring patients to the top table, but I would love to see more diversity in patient speakers in 2014.

    • Carly says:

      Thank you for your lovely comment, Marie. I have a lot of respect for ePatient Dave and owe a lot to him for forging a path for patient acceptance. It will be a challenge to widen the field for patient voices without diminishing or disparaging those already out there. I’m not looking to knock anyone off their stage, but it would be awesome to make the stage wider!