Posted in Patient Advocacy

Patients As Partners or Patients As Tokens?

It has been fascinating to watch a discussion take place on social media centering on the pertinent issue of whether patient engagement is a concept which is truly being embraced or is mere tokenism.

The debate started with the announcement of a Canadian Patient Experience Summit:

Connect with other healthcare leaders at the NATIONAL FORUM ON PATIENT EXPERIENCE and help shape the future of patient centred care in Canada.

This unprecedented event provides the perfect platform for exchanging ideas and sharing solutions. The conference is dedicated to addressing the central issues and successful strategies for implementing patient centred care.

However, one vital ingredient from the conference appears to be missing:

The Patient!

Colleen Young asks the obvious question of the organizers: ” Do you know about the patient motto “nothing for us without us”. More and more health conferences (med2.0, medX, Doctors2.0) are including patients by setting up special funds to allow them to participate. How can one develop, and indeed implement, truly patient-focused initiatives without patients?”

Other commentators quickly added their voices to the discussion and while the patient advocate in me nodded in agreement,  the PR professional in me started to see a PR disaster unfold in real-time online.

You’re probably familiar with the work of Lucien Engelen, who recently declared he would boycott any healthcare conference that didn’t include patients, and who asked other healthcare leaders to join him. I think this is a fantastic opportunity for your organization to show real leadership. While the backlash against conferences that exclude patients has been fierce, the reverse is also true … conferences that embrace patient involvement enjoy great support from a very passionate, vocal and big community!

So a potential PR disaster could still be turned around!

However…

Carolyn Thomas expressed her concern that doing so at this stage will just reinforce the tokenism aspect of including patients

Call me cynical, but in fact I now wonder if our little tempest in a teapot here is going to attract the attention of some PR types at SI who will, as so often happens in industry, decide to co-opt patient engagement by deliberating getting onboard the bandwagon in order to earn the “Patients Included” badge (which until now they’ve never even heard of!) since we have kindly brought it to their attention.

I am really interested to see how this will be addressed by the conference organizers. It demonstrates once more the rise of the patient voice – a voice that will not tolerate tokenism – and serves as a warning to all those who jump on the patient engagement bandwagon without a true commitment to its principles.

28 thoughts on “Patients As Partners or Patients As Tokens?

  1. Reblogged this on Journeying Beyond Breast Cancer and commented:

    It demonstrates once more the rise of the patient voice – a voice that will not tolerate tokenism – and serves as a warning to all those who jump on the patient engagement bandwagon without a true commitment to its principles!

  2. Thanks Marie for adding to the savvy questions being asked of the National Forum on Patient Experience (or perhaps we should arbitrarily change the name of this conference to “the non-patient experience”?) Thanks also for including a link to my blog post asking the same question (Has Industry Co-Opted Patient Engagement?)

    As a veteran of the public relations field for the past three decades, I have mixed feelings about what’s coming next.

    One possibility: cowed by the embarrassment of growing questions like ours, the conference organizers, Strategy Institute (a private company in Toronto), decides: “Yikes! We better rustle up a patient or two for this conference and prominently feature them in our marketing plan!” (which, by the way, is likely what I would have advised my own PR clients caught up in the same public embarrassment). The good news: even though patients may have been brought to the table out of sheer embarrassment, the end result is that a big group of “senior healthcare executives” (the target market for this conference) would actually have to sit there and listen to the patients’ voices.

    But wouldn’t that damage control move simply be pandering to the very reality we are protesting here? Make no mistake: savvy industry insiders are at this very moment figuring out how to take advantage of the patient engagement movement to help enhance their credibility, sell products, appease shareholders, and garner positive media coverage – even if entirely motivated by CYA pressure. Strategy Institute’s ignorance about using patients as valuable PR tools was merely a reflection of their lack of experience/awareness. But now we have made them aware.

    Another possibility: Strategy Institute does nothing. As we used to say in PR, today’s news is tomorrow’s fish wrapping. So they just wait out this little fuss and continue publicizing their Toronto event to recruit event registrations from “senior healthcare executives” – trusting that “these yappy patient advocates will eventually move on to something new and leave us alone.”

  3. So true Carolyn. If I was advising SI I would advise using this as a learning opportunity. Go back to the drawing board and redesign the conference to truly embrace patient engagement, not just pay lip service to the concept. A challenge though this is for a commercially driven enterprise, there is an opportunity here to turn this into a PR coup if handled well. From a purely PR professional point of view, I am fascinated to see how this will play out.

  4. Reblogged this on The Ethical Nag and commented:
    Marie Ennis-O’Connor is a respected patient advocate, speaker, blogger, PR consultant and health activist from Ireland. This post was originally published on her site, ‘Health Care Social Media Monitor’, one of Healthline’s Top Health Blogs for 2012.

  5. Agree with both of you, Marie & Carolyn. As a patient and a healthcare clinician, I see a fair bit of this sort of thing at both a local and a national/int’l level for various conferences and seminars. Even initiatives by providers to offer new patient services end up revealing an emphasis on ‘market shares’ and ‘new revenue streams.’ The bottom line is still about money, not the needs of patients.

    1. Marie, thank you for this blog…Pardon my redundancy. I’m going to repeat my comment from the HCSMCA Linkedin Group.

      “Very pertinent dialogue happening here. Will be interesting to see the final outcome of the conference and “patients as partners’ Vs “patients as tokens”. Would also be interested to know where along the IAP2 or engagement spectrum is the conference aiming (Informing, Involving, Collaborating….Empowering). I’m thankful for the dialogue here. To me, it demonstrates the need for continued patients as partners in such forums and their co-presence/participation with health leaders/providers….same rooms….same time is needed as we observed in Your Voice Counts here in BC.”

      On a related note I’m looking forward to moderating this week’s HCSMCA Evening Tweetchat as this is one of the topics being discussed. I hope you and others will consider joining in that live dialogue Wed. Mar. 27 6pm Pacific Time/9pm Eastern.

  6. When I went to ASCO’s Quality Care Symposium in December, they invited patient advocates to come to the meeting. They begged us to come up to the mikes and give our input and even had a patient advocate as one of the speakers. I have been very encouraged watching ASCO include patient advocates whenever they can.
    I did find it interesting though that during a conversation at lunch, when I mentioned to an oncologist I was a patient advocate I could tell he thought , “oh no not one of those”. Yet when I spoke about breast cancer and he realized I was a very educated patient advocate and not just someone who had a disease and because of that I thought I was and expert, it was nice to see that he had a whole new perspective about what today’s patient advocate is all about. While I know that the bottom line is money for many things in medicine, recognizing that patients understand money issues especially patients in the US who have insurance and pay enormous amounts of money to get the care they need especially with oncology, there is a new understanding happening and patient advocates bring a lot to the table.
    Thank you Marie for opening this important discussion.

  7. Marie, thank you for this blog…Pardon my redundancy. I’m going to repeat my comment from the HCSMCA Linkedin Group here. ”

    Very pertinent dialogue happening here. Will be interesting to see the final outcome of the conference and “patients as partners’ Vs “patients as tokens”. Would also be interested to know where along the IAP2 or engagement spectrum is the conference aiming (Informing, Involving, Collaborating….Empowering). I’m thankful for the dialogue here. To me, it demonstrates the need for continued patients as partners in such forums and their co-presence/participation with health leaders/providers….same rooms….same time is needed as we observed in Your Voice Counts here in BC.”

    On a related note I’m looking forward to moderating this week’s HCSMCA Evening Tweetchat as this is one of the topics being discussed. I’m also going to post links to these discussions to help reach another 2600 people in three other groups including PCH Person-Centred Health, Canadian Health & Health Care Consultants (CHHC), Health Care Leaders BC.
    “Engaging Stakeholders in Health” –paul

  8. In Ontario Canada, my extensive experience in the paediatric and adult sector around this so called concept of patient centered care, or family centered care; or whatever buzz phrase is put to it, is simply – it’s tokenism. I had a multi-disciplinary meeting this week to address concerns I had around a recent emergency room visit and I decided, rather than endure the nonsense they wanted to focus on, I will provide them with the pleasure of my pain. A patient’s perspective of what brought me there and why I feel I was treated so inappropriately. I feel I did quite a good job of it, and I’m not finished yet. I just shared a whole series of trauma to help them understand that people just don’t wake up one day and pick a life of pain.

    In our country, any patient advocate I’ve ever met has been paid for by the hospital.

    So, what gives with that?

    We need an independent party to pay the advocate; otherwise it can only be a mess with both sides buttered by the same blind chef! So that’s what I have to say about that.

  9. As a patient-advocate for the National Lymphedema Network (NLN), I can really attest to the value of patient input into research and clinical initiatives. I’m thankful that the Executive Director of the NLN felt it was important to have patients represented. Thanks for bringing this issue to the forefront. xo

  10. FYI, I have not heard from the conference organizers, Strategy Institute (a private company in Toronto) who made the original post on LinkedIn. I suspect they are regrouping. Pity Tara who has been at the company for only 3 months. I hope she does not pay the price for what has been a very informed discussion. What additionally irks me is that because Tara started the conversation, yet contributed little, she registers as the main influencer of the #hcsmca LinkedIn group. Metrics obvious count quantity of replies and no consideration of quality.

    I thank everyone commenting here and in the LinkedIn discussion for helping me to shut down a commercial post with constructive, respectful and indeed pithy conversation.

    Carolyn, I appreciate your eyes-wide-open cynicism. I suspect we will see plenty more tokenism before we see true inclusion.

    1. ‘Eyes-wide open cynicism” – love that, thanks! 😉 Or, as a Mayo Clinic cardiologist recently referred to me (in the nicest possible way, of course) a “contrarian”. I’ll take that, too.

      Colleen, I too noticed that Tara’s name as a Linked In “top influencer” rode high day after day during the height of our #hcsmca discussions. Yoiks…

  11. The translation in English of my blog post “The non-patient experience conference” is now posted at http://wp.me/pOEgZ-TW – Thank you Marie for bringing to my attention this interesting discussion. Many thanks to Colleen who showed once more her talent as Community Manager and to all the contributors to this discussion.

  12. Thanks Kathi.
    I am encouraged by the vigour of the discussion and enheartened by the attitude of the participants here on this blog and on the original LinkedIn conversation (over 70 comments). Everyone has offered constructive criticism and relevant ideas that will propel change and lead to more meaningful patient participation.

  13. Hello everyone,

    I’m a bit late to the game on this thread, but hopefully you’ll be notified.

    I’m the producer of this event and I was well aware of the need to include fmr. patients and caregivers from the outset. I took actions to make sure they were included.

    In fact, patients.caregivers appeared on the agenda from the start. Unfortunately, they were not singled-out as such; their “titles” were the only indication of their status (which, given the font size, are somewhat inconspicuous). It should also be noted that we were also in discussion with a number of other people who were not included on the agenda upon release because they had not been fully confirmed to speak.

    Hope this clarifies everything!

    Warmly,
    Stef

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