What if health care…? in the spotlight

The “What if health care…?” train rolled through Stanford’s campus during the Medicine X conference and a hashtag was elevated to a mainstage discussion.

In the video below, I tell how #whatifhc began and talk a bit about why Twitter was a good place for the dream-sharing to start:

Paul Costello framed the #whatifhc panel as an opportunity to “paint a portrait of the world we want in health care.”  The conversation took off in fascinating directions among Regina HollidayBertalan Meskó, MD, PhDDavid van SickleMichael Seid, and Stephen Friend MD, PhD.

For more insights shared during the session, check out the Storify created by the Intakeme team.

Also, you might find it useful to look at the Wordles of all the words and other hashtags associated with #whatifhc, created by Catherine Rose.

Here’s where I need your help:

A few people have asked me why I think #whatifhc took off like it did, with hundreds of people participating from all over the world. I came up with the following, but would love to hear from other people about what you think:

1) Ease of participation (relatively — if you are on Twitter, you can get it on it).

2) Open, welcoming community (lots of RTing, inclusion on the Storify).

3) Short hashtag, easily understood (once explained, people get it right away).

4) Forced brevity for expressing an idea (a tweet requires people to boil something down to its essence, like a line of poetry).

5) Implied optimism (“What if…?” asks for dreams. Frustrations and anger come too, but I think the positive spin helped get it off the ground).

6) No “owner” (my metaphor is that I’m the manager of a community garden of ideas. I think it helped spread the idea to more communities since it wasn’t owned or officially sponsored by #hcsm or #s4pm or anyone else).

What do you think? Why did #whatifhc work so well and roll on for so long? What do you think should happen next? If you want to help out, a small team is forming — you are welcome to join us!

15 thoughts on “What if health care…? in the spotlight

  1. Hi Susannah,

    Having had the great pleasure of being in the MedicineX “live” audience in Stanford, I guess I had the additional experience of watching the dynamics. So yes, all 6 points you noted are absolutely valid but one other element that stood out for me was no ego. There was not a single element of upmanship but just the opposite. Everyone, from the those on stage to those in the live audience to those in the Twittershpere got into the groove of adding constructively and in interesting directions. And that all starts from those who led the discussion, great minds, great insight and the sort that naturally drew everybody else in as participants. Watching the dynamic form the instant the session started, you can see how this was not going to be your average discussion and made for a great, insightful, inspiring time for everyone.

    And so yes, if there is an opportunity, I would be very happy to help out.


  2. Susannah asked me to comment here. I am going to serve as the contact point and have been coordinating the “small team” communications. If you would like to join up, please email me at carlyrm (at gmail) and I will add you to the list and share our ideas so far.

  3. I think in line with your implied optimism point, the whatif implies hope in a sometimes hopeless situation. It allows me to dream about a better world, one without a life shortening, progressive and fatal disease. It gives me a place to see what others goals and ambitions are for chage and the opportunity to connect with them to take action. And I think people naturally grab on to hope, whether they’re the ones who need it or they’re just people who can offer it. I’d love to turn some of the hopefullness into action, so count me in!

  4. I was in the room during this panel discussion, and loved the conversation, with one big “but” – I was getting a whiff of the ol’ paternals in some of the observations and commentary from the panel.

    I get that massive shifts take big thinkers and long-term effort. However, to say (and two panelists did) that price visibility/transparency is a side issue misses a critical opportunity to educate and engage the wider public on how they can get value – not “everything” but VALUE – out of their interactions with the healthcare system.

    Dream big, but understand that change happens most swiftly at street level. An informed, empowered individual is as powerful a virus as exists on the planet. Let’s go replicate.

  5. Susannah,
    I encourage the continued whatifhc conversation on on your blog, at conferences and ton twitter. Endless number of ideas. Let Those with transformational potential be born.

  6. I have two thoughts, from both my participation in the twitter #whatifhc conversation as well as from watching the #medx webcast:

    (1) The optimism comes not only in the implied “what if” but also in the fact that we are watching health care dreams become reality in real time with open notes, technology advances, etc. For example, just two years ago, I was searching for a good service and technology to compile my son’s medical records (we’re talking 10 physicians, several institutions, etc.) with easy access at all times. Two weeks ago, I watched a presentation of Caresync and now his records are being compiled with access through an app on my phone and easy distribution to each provider. I look forward to hopefully someday having full electronic integration with data tracking (e.g., hearing test results, echo values, etc.), but I am encouraged by the progress just during his health journey.

    (2) I second an earlier commenter’s note of vestiges of paternalism in the panel and I further observe the following. Regina Holliday, in many ways, typifies this and the next generation of caregiver. I would venture that more caregivers are women, and as time passes, more will have grown up online and in social media. Caregivers often push the envelope because sometimes we feel fewer qualms about fighting and screaming (whether in person or on social media) when we are fighting for our child, our spouse, or our parent. So, her comments about what patients and caregivers expect in future healthcare should not be taken lightly and, I would argue, likely represent a central focus of many patients and caregivers.

  7. I have been thinking quite a bit about each of the comments posted so far.

    I, too, had some strong feelings and reactions as I watched the panel and would urge anyone reading this thread to watch the video, the whole video, and think about what you observe happening on that stage and within your own mind.

    What I’m hoping that #whatifhc has shown is the power of “Yes, and…” (the key to good brainstorming).

    For example:

    Open access to journals! Yes, and…open access to price lists in health care.

    Maybe because I know most of the panelists pretty well, I forgave everyone in advance. So that when there was a moment of silence, a moment of confusion, a moment of missing the point, I had already forgiven them and knew they’d catch up — either that next moment or pretty soon.

    Note that I don’t extend this “forgiven in advance” pass lightly. I reserve it, in general, for family members, dear friends, and close colleagues. But Medicine X feels akin to those 3 groups, to me, even if it’s illusory or temporary. In that way, during that weekend, we can be open and honest with each other, admitting when we don’t know the answer or don’t even understand the question. That’s how it works when there’s trust.

    So, again, watch the video and think: “What if I forgave everyone in advance for not saying the right thing? What if I gave everyone the benefit of the doubt? How would that change what I learn from the discussion?”

  8. Hello Susannah and thanks for this.

    “Maybe because I know most of the panelists pretty well, I forgave everyone in advance.”

    I watched this panel from the comfort of home (in my jammies!) and unlike, you, I did not “know most of the panelists pretty well”, with the exception of Regina whom I’d met at last year’s Medicine X when she presented me with my lovely Walking Gallery jacket.

    So like Casey and Melissa have already mentioned, I too observed (and was shocked by) the paternalism I witnessed during this panel. As an average viewer who lacks the benefit of prior personal relationships with the men onstage, for example, I actually gasped right out loud when Regina’s revelation that she was “third-generation non-insured” was both interrupted and then bulldozed over by a fellow panelist who didn’t even skip a beat in reaction to this important Real Life perspective. All of the other panelists just sat there, also ignoring Regina’s point. Indeed, one in particular seemed to stare deliberately off in space instead of maintaining eye contact whenever Regina spoke at all. Offering them a free pass by forgiving in advance what they say or don’t say or might say in the near future is not helpful in informing the full picture. Thank God Regina was there in the first place!

    I wrote Regina later, thanking her for at least trying to “keep it real”.

  9. #whatifhc could have a Blog, Tweet chat, conference, etc? I believe we are best when we are open just like right now having this conversation. #whatifhc gives us this amazing opportunity to think beyond barriers. #whatifhc is like a Twitter version of IDEO phrase I’ve heard Dennis Boyle say “How might we…….”

    Now the challenge comes with the amount of work this all involves. How do you keep it sustainable? We need business and/or non-profit models so patients, caregivers, advocates, and others don’t keep creating valuable ideas and resources and received no return on their investment.

  10. I have been mulling this over before jumping into the conversation. I was truly inspired by the #whatifhc Twitter conversation, and impressed with what I was reading – its openness, creativity, positive nature and level playing field.

    Two things surprised me about the panel discussion. First, that there was no summary of the history of the hashtag in terms of the breadth and depth of ideas addressed, who participated, from where, etc. I felt like we jumped into the middle of a conversation. Paul opened by saying it was a “dreaming session” but its sense of continuity with the earlier discussion was lost. Second, it seems that one of the unique benefits of Medicine X is bringing patients, as full and equal participants, to the table. I felt an opportunity was lost in this regard, and wonder what the dialogue would have looked like if either A) it had been moderated by a patient and/or patient advocate or B) had Regina’s challenges been tackled by the panel. What if we had taken some of the biggest challenges presented and dreamed up how they might be addressed? My issue is not whether they deserved or needed forgiveness, but how much richer the conversation might have been.

  11. Thank you for these latest comments in a conversation that I hope will continue for weeks, either here or elsewhere, online and offline.

    To continue a theme that Regina & I developed in a blog post about #whatifhc, I imagine some conversations as dances or pieces of music, with different tempos.

    For this conversation, I am imagining a metronome set to the slowest tempo (if you don’t know what I mean, go to: http://www.metronomeonline.com/ and click the 40 dot). We are proceeding at an adagio pace, “at ease,” slow and stately, or even largo or “broadly.” I deeply appreciate the thoughtful approach of each person who joins the dance/drum circle/orchestra/your-metaphor-here.

    This panel is sticking with me more than any other that I witnessed at Medicine X or any of the other health events I attended this fall. Possibly because I was part of the #whatifhc genesis, possibly because I had high hopes we would figure out what to DO with what we’d started, possibly because I knew the panelists to be smart, thoughtful people, possibly because I was disappointed that we did not figure out what to do. And possibly because I, too, felt uncomfortable and challenged by it.

    Can we take lessons from these challenging conversations? The one that happened online before Medicine X, when it was just a hashtag; the one that happened on stage; the one that is happening in the aftermath?

    What if we could get a do-over? How would we design a panel — or series of panels — that would better address what our hopes were for the conversation? Who would be on it? What would the questions focus on?

    • Like you, I remain connected to this theme.

      And as I look at the world in general, I find myself increasingly frustrated that in so many areas we seem “stuck,” despite the brain trust of thinkers and experts. It sometimes feel common sense is missing. I have a fantasy that we really can, as they did in the movie Apollo 13, put the things we have in a room, add the best and the brightest, and solve the problem.

      As you and I discussed in the context of breast cancer, one challenge is to figure out where to start, perhaps guided by Catherin’e Wordle as a visual representation of the thread, or what might be the first in a series of changes, or simply what could be implemented (because I believe seeing movement often spurs progress). As for continuing the discussion, I think this has to evolve into a series of panels. I can’t imagine that any single group of experts can address the broad range of problems in our system. A series allows ideas to germinate without the pressure of having only an hour tackle the subject, and allows both panelists and participants to return with deeper questions and more thoughtful answers.

      I also wonder about bringing people together on a consistent basis, such as in a Twitter Chat, that would cultivate relationships, build connections, develop change agents. The challenge of Twitter Chats, of course, is that they can’t really be moderated. Maybe Google Hangouts? Or simply a moderated online panel with a vehicle for communication with distant participants (as Nick Dawson provided during the MedX).

    • I would love to have more opportunities to brainstorm the future of health care in smaller groups, like with the IDEO challenge. Is there a way to make that type of “What if” or “How might we?” conversation a more integral part of conferences like MedX? A panel is limited by time, and the number of people speaking out into the crowd. What if the people seated at the round tables in the room were mixed with epatients and given some direction and left to discuss their dreams? What if this was the “panel” right after an energizing keynote on the last morning of the conference? What if an expert speaker taught the group practical ways to take the next step(s)?

      For myself, in the weeks since MedX, I’ve been advised to submit an abstract for next year (something I have no idea how to do, or where to begin); I’ve started with a simple data entry idea that’s turned into an exercise in learning how to data-mine (something I don’t know how to do), and working with a group of epatients to make the invisible visible in a way that doesn’t harm those that need to remain anonymous (I’m only halfway sure how to do this one). I have no shortage of IDEAS, but am in desperate need of a coach or mentor.

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