Saturday, January 24, 2009

A Call for a Patients Speakers Bureau

We need to create a speakers bureau that lists informed patients who are available to participate in conferences and other speaking engagements. I think this idea was first suggested to me by the wonderful Ted Eytan MD. We need infrastructure (a place to host the list) and funding for the speakers.

Everyone's talking about creating a new world of healthcare that's more patient-centered or patient-oriented. Actually, in its fullest realization, this will be participatory medicine. (See the many posts on the e-patient blog.)

But how can we do that if patients aren't at the table as this new world is thought out?

There are three separate issues.

  • First, conference organizers need to realize that patients should be involved.
  • Second, they have to know where to find them. That's where a bureau would come in. (Conference organizers commonly find speakers by turning to a speakers bureau in their field. Google "speakers bureau" and you'll see how widespread they are.)
  • Third, patient participation needs to be funded. All other conference participants do it as part of their day job; patients can't.
This isn't just about me, but I'll use my own example to show how this plays out. I would attend far more conferences than I do, but I have to take time off work and pay travel expenses:
  • I was on a panel at the Mass Tech Leaders healthcare cluster in June, with the CIOs of local hospitals and vendor reps, with investors and analysts in the audience. I had to take time off work.(My parking was validated.)

  • That went well enough that I was subsequently invited to be on the Advisory Board for that group. I attended several meetings, and became co-chair of an upcoming event in April. But I had to stop attending meetings because they're workday meetings.

  • When I spoke at Connected Health 2008 in October (slides and video), I had to take time off work. It was local for me (Boston), so I only had parking costs ($30). I would have loved to attend both days, talk to people, learn and teach, but I didn't want to use two vacation days.

  • Kudos, though, to InvestNI, the Northern Ireland investment group. Northern Ireland is the first country where Europe is rolling out the EU's connected health initiative. They invited me to speak at their dinner that Monday night, and generously gave me a hotel room so I didn't have to drive home to New Hampshire overnight, then back in through morning rush hour.

  • I'm speaking (with my doctor) at TEPR+ in Palm Springs on February 1. The conference is paying most of my travel costs, but it's costing me vacation days.
Can you see how difficult it'll be to create the new world if patients aren't at the conference table, aren't in the meeting room, aren't at the industry conferences where that future is planned? How do we start?


  1. We start by having the Society for Participatory Medicine talk about the need for such a bureau and sponsoring all the resources necessary to make it happen. This is already in the original principles of the Society, together with a need to change the current lack of representation of African Americans and other minorities at all the major health 2.0 related conferences.

  2. I think engaging patients is critical to healthcare providers' ability to be consumer-oriented and responsive. As a fellow cancer survivor I would love to share my experience and potential take-aways with hospitals and providers - apart from the meaningless "patient satisfaction survey" - but no one reaches out in meaningful ways to facilitate that. I strongly support a Patient Speakers Bureau effort and would be happy to contribute to its success.

  3. Great post, Dave! Documenting how patients have been included now is a great way to start. My contribution:

    Patient Voices at CHCF’s Chronic Disease Care Conference

    Caron Lee, the organizer of that conference, wrote in the comments about how they found patient advisors.

  4. Susannah, thanks for linking to that post. I was going to but ran out of time before we had to head to a board meeting. CHCF's initiative was very much on my mind.

    Gilles/KosherFrog, I couldn't agree more about the need to include EVERYONE in the plans for the next generation of healthcare. And for the e-patient perspective, the work of Susannah and others at Pew continues to document that we can't safely presume that the PC is the way to reach everyone.

    Great to meet you, Katie! How did you get here?

  5. Hotcha... additional contribution via Twitter, from Delia Chiaramonte, a doctor in Baltimore: "@ePatientDave I spoke at a great conference on Chordoma that had docs and patients as speakers. I have patients to suggest when UR ready." Doncha love how social media let idea spread and people come together??

  6. Dave,

    Your brilliant idea is only exceeded by your great examples of why a speaker's bureau for patients is such a great idea...

    I've had some success by promoting myself as a patient speaker, and have gotten good reviews. I struggled in one case to find patients who fit a certain profile to join me on a panel, for just the reasons you've specified.

    I've taken my bad experience with a medical error and turned it into a career with the hope of being considered an equal to the professionals in these conversations, and a goal of improving the experience for all of us... but not all patients can do that. You're most definitely on to something here!

    I wonder if one of the established bureaus would help?

    Trisha Torrey
    Every Patient's Advocate

  7. Dave, MaryO (@cushings on twitter) and I have been pushing awareness about Cushing's with the medical community and with other patients. MaryO has been working for patient awareness for a very long time, virtually single-handedly. Over the years, she's inspired many patients who are members of her support/message board to speak at conferences and present to groups.

    I can't speak for MaryO, but I am very interested in presenting/speaking to patient and medical groups. I think it is time we unite across all venues of health/illness to work together.

    As I've said in my articles about the PCP shortage and other crises in healthcare, a lot of folks complain a lot, but no one is working together to unite these folks in a active, viable group. With all the organized online chronic illness groups, I believe there is a huge advocacy pool if organized.


  8. Yes, yes, yes! After attending the Health 2.0 Conference in SF in October, one of the most obvious omissions from the conference was the patients. Here we were planning for patients, talking about what they wanted, and what was best for them... yet, none were present (at least in an official capacity) to actually give an opinion. There were only a couple of us who would speak up or Twitter occasionally that there needed to be a patient presence.
    Like others have mentioned, as an advocate I would love to speak and get involved.
    I think it would be great to keep a database with illness specific experts as well as general experts - there is a niche for everything and you never know what will be needed.
    Non-profit organizations are also great resources for experts/advocates. Many of us patient advocates, like Robin mentioned, have been doing this alone and would love some kind of organized effort!
    Should we start something simple like a Google group?

  9. We could certainly start a Google Group. But let's bear in mind that we also need the other two aspects I mentioned: conference organizers need to REALIZE they ought to have knowledgeable patients speaking on certain topics (the conference will be palpably more valuable if that's done well), and that the patients need funding.

    I also suggest that we ought to set things up so we can get rated, just as many folks want to rate doctors. Plus, I know from career work that speaker ratings help speakers improve.

    ---Anybody know if speaker's bureaus charge for their services, and if so, what their fee structure is like?

  10. btw, re "here we were, planning for patients" etc: In my very first public appearance as a patient participant (on a health IT panel last June), being new to all this, I waited and listened, and eventually the first public words out of my mouth were these:

    "I want to propose a shift in the conversation here. We're all talking about patients in the third person: patients this, patients that. I'm here to tell you, it's NOT third person, it's PERSONAL: it's FIRST person. Whether it's you yourself, your parents, your children, or someone you love, a health crisis is in your future. And when it does, you want the system to work better than it does today."

    This is what drives every bit of my participation in creating the new world of participatory medicine. As I keep saying, "That's why it says at the top of the e-patient blog, 'health professionals can't do it alone'."

    For anyone who hasn't already, I urge that you read my short synopsis of Seven Preliminary Conclusions, which is chapter 2 of the e-patient white paper,"e-Patients: How they can help us heal healthcare." Today is one year since I finished reading that book, and it changed my life.

  11. I'm going to read the e-Patients white paper. Then I'll head back here to see if there's more ideas on how we (PATIENTS) can work to make a difference. Count me in! Great post, thank you! @stales on twitter

  12. Great to see you here, @stales! Keep in touch.

    This is gonna be our year, I think. The Great e-Coming Out. You will soon see that not only can you *spell* e-patient, you're one of what they wrote about. (Same way I found out, a year ago today. Check it out.)

  13. This is excellent!! I have become active in promoting the patient perspective in the area of multiple sclerosis.

    I would have loved to attend the Health2.0 conference (which I couldn't have afforded) but instead spoke at the J&J communications conference about blogging and social networks for chronically ill patients. The trip was completely financed by J&J, although I did have to cancel days of work (freelancer so no paid time off).

    That was my 1st speaking engagement on the topic of patients and from the response, it is evident that the patient voice needs to be heard.

    I agree whole-heartedly that the patient needs to be at the table and given equal voice.

    Please let me know what I can do to assist and participate in the project of developing a Patient Speakers Bureau. I'm very interested.

  14. I'm flabbergasted and happy to have so many empowered / uppity patients showing up here. :) This is so great - the power of Twitter, I guess, to spread an idea quickly!

    Sorry I haven't participated more here - I've been slammed at work this week getting our new blog started before leaving home around 5:30 Sunday morning to fly to the TEPR conference where my doctor AND I are repeating our October talk about PARTICIPATORY medicine. (Well, strictly speaking it's about how we used the Internet, but it has Participatory Medicine woven all through it.)

    A new world is coming, my peoples! If you haven't read Chapter 2 of the e-patient white paper, do it. We have much to accomplish.

    btw, who's going to organize this bureau?? It's rumored that the forthcoming Society of Participatory Medicine has some seriously connected people who love our idea. IMO, patients still gotta be in charge, but as we ALL know, knowing the right people can sure speed things along. (Lord knows I benefitted from getting steered to the right people pronto.)

  15. Excellent idea! I just heard your inspiring presentation at the TEPR conference with Dr. Daniel Sands. You are a wonderful spokesperson for the need to empower patients to play a participatory role in healthcare, including that of educating the medical community, clinicians, patients, and those who support them.

  16. Thank you so much, Dr. Velasco. I'm so grateful and glad to hear that our message connected.

  17. I think it would be great if this is organized. While not a terminal illness, I find that doctors often have no clue on how to deal with women suffering perinatal mood and anxiety disorders, in particular OB-GYNs and pediatricians. I do a lot of speaking from the patient's perspective and I find that healthcare professionals really appreciate it.
    Katherine Stone, Postpartum Progress

  18. Wellll, let's find out who subscribed to this post back in January. :)

    David Meerman Scott, an author and speaker, has a good post Ranking Speakers Bureaus. I'm wondering if there's any reason some of us shouldn't go register there. (I haven't taken time to look into them yet.)

  19. David's post is very interesting and I need to check out the sites/bureaus he reviewed.
    (hehe, I subscribed to the comments on this post.)

  20. Dave,

    Speakers bureau is a great idea...I've only given presentations twice, but each time I came away knowing that the audience had been enlightened about the patient's perspective in a way they had never been before. Made me realize that communication and raising our voices is critical to the success of patient-centered care.

    Your heroic and wonderful story is a true healthcare success...the challenge is finding brave, willing audiences who also dare to embrace and learn from the sad failures of our hc system, which is what many patient safety personal stories are about.

    My passions are spreading the word about the need for compassionate disclosure of medical errors that cause patient injuries or death, the urgent need for death- certificate reform, including patients/families in route-cause analysis and mortality review panels, and using data to drive improvement and inform patients.

    Keep up the great work!


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