* Patients Not Included

A few weeks ago, I went for the first time to Stanford’s Medicine X conference. It’s billed as a conference that brings a “broad, academic approach to understanding emerging technologies with the potential to improve health and advance the practice of medicine.”

Well, I went, I saw, and I even briefly presented (in a workshop on using patient-generated data).

And I am now writing to tell you about the most important innovations that I learned about at Medicine X (MedX).

They were not the new digital health technologies, even though we heard about many interesting new tools, systems, and apps at the conference, and I do believe that leveraging technology will result in remarkable changes in healthcare.

Nor were they related to social media, ehealth, or telehealth, even though all of these are rapidly growing and evolving, and will surely play important roles in the healthcare landscape of the future.

No. The most remarkable innovations at MedX related to the conference itself, which was unlike any other academic conference I’ve been to. Specifically, the most important innovations were:

  • Patients present to tell their stories, both on stage and in more casual conversational settings such as meals.
  • Patient participation in brainstorming healthcare solutions and in presenting new technologies. MedX also has an ePatient Advisors group to help with the overall conference planning.

These innovations, along with frequent use of storytelling techniques, video, and music, packed a powerful punch. It all kept me feeling engaged and inspired during the event, and left me wishing that more academic conferences were like this.

These innovations point the way to much better academic conferences. Here’s why:

The  power of patient presence

I wasn’t surprised to see lots of patients at Medicine X, because I knew that the conference has an e-patient scholars program, and that many patients would be presenting. I also knew that the director of MedX, Dr. Larry Chu, is a member of the Society of Participatory Medicine. (Disclosure: I’ve been a member of SPM since last December.)

I was, on the other hand, surprised by how powerful it was to have patients on stage telling their stories.

How could it make such a difference? I am, after all, a practicing physician who spends a lot of time thinking about the healthcare experience of older adults and their caregivers.

But it did make a difference. I found myself feeling more empathetic, and focused on the patient and family perspective. And I felt more inspired to do better as a physician and as a healthcare problem-solver.

In short, having patients tell their stories helped me engage with the conference presentations in a more attentive and meaningful way.

Now, some will surely be tempted to wave this off as a gauzy touchy-feely experience that is peculiar to the fruit-cakes of the Bay Area; a nice conference touch that isn’t materially important to the purpose of an academic conference.

Academics come to conferences, after all, to tell each other about interesting and important developments in their field, so that they can return to their usual environment and do better work. Most experts probably think they already know enough about what happens to patients, or they think it’s more important to hear from other experts than from the patients.

But it turns out there is some psychology research to back up my own experience: studies have found that concrete examples help ideas and concepts stick. They can also help people solve certain problems faster. For instance, according to “Made to Stick,” most people find it easier to make a list of white objects found in the refrigerator than of white objects overall. Even though the universe of white objects is bigger than that of white objects found in fridges, our minds do much better when a fridge is specified because having a concrete item to anchor our thinking allows us to generate the white objects much faster.

There’s also the issue of “empathy for the end-user,” which is a core tenet of the design thinking approach to solving problems. In healthcare, the end-users are the patients (and also the front-line clinicians) who are supposed to eventually benefit from all the research and hard work of the academics.

Imagine if all academics left conferences feeling greater empathy for the end-users of their brainy thinking, and with concrete examples to help them focus their academic efforts.

Would we end up doing better work serving society? I think we would.

The power of patient participation

It’s one thing to invite patients to tell their stories, and to actually listen when they speak.

It’s another altogether to welcome them as active participants in solving healthcare problems, and in this arena the MedX conference sets an important example that all academic conferences should consider copying ASAP.

At MedX, patients presented new technologies and solutions that they’d helped create. (Needless to say, these are often more patient- and person-centered than what we doctors and academics might come up with on our own.)

Patients exchanged thoughts and ideas with healthcare professionals in panel conversations held on the main stage. In the workshop I helped present on patient-generated data, small groups consisting of patients, clinicians, and technologists brainstormed ways to better incorporate patient-generated data into clinical care. (The group I was facilitating came up with some ideas I’d never thought of; seven heads with complementary perspectives are better than one.)

In fact, the entire first day of MedX was titled the “Patient neXt Symposium,” and patients comprised one of MedX’s three advisory boards (the others being a scientific advisors board and a “thought leaders” advisory board).

In other words, MedX’s approach takes to heart the phrase “Let Patients Help,” which is the title of e-Patient Dave’s recently published book on how patients can and should meaningfully participate not only in their own healthcare, but in improving the healthcare system. (See this TED video here for Dave’s take on patients being the most under-used resource in healthcare.)

Now, it’s true that most patients at MedX would probably describe themselves, and be described, as “e-patients,” a term that just last week drew a perplexed look from at least three of my colleagues in academia to whom I was describing my MedX experience.

And there is some truth to the common objection that I hear: “But those e-patients aren’t like most patients. They’re more motivated, more medically sophisticated, and often of higher socio-economic status.”

True. And still, even though these e-patients may not be entirely representative of all patients that we serve in healthcare, it still seems clear to me that we are much better off having e-patients at conferences rather than no patients at all.

After all, if our systems and solutions don’t even work for the patients with extra energy and motivation, how will they be manageable for those with fewer advantages?

More on MedX

A few other notable features of MedX:

Compelling multi-media presentations. Very few dry bulleted PowerPoint slides here! At MedX, storytelling seems to be encouraged and guess what, it’s quite an effective way to make an impression, especially when combined with well-made short videos and music.

In reality, I think it would be a stretch for most academics to learn multimedia techniques and attempt to present their points at conferences in a more compelling fashion. However, it’s instructive (and inspiring) to see these techniques in action, as we should certainly learn to use better approaches when it comes to sharing our ideas with the public, or otherwise influencing an audience outside our expert peers.

For those who want to see what MedX presentations were like, you can find videos on their YouTube channel here.

Walk and talks. I’d never seen this at a conference but it struck me as a brilliant twist on the usual stand-and-network routine. After all, walking is healthier, and can even clear the mind and lead to more creative conversations.

Social media extension of the conference. Not only were conference attendees tweeting away (myself included), but many other people followed the conference via Twitter (#medx) and were even invited to submit questions for panelists via Twitter.

Warm, friendly, inspiring atmosphere. I feel almost a little silly mentioning this, but it did feel notable to me! I think some of this is the tone that Larry Chu sets, and some of it is that it’s a relatively small gathering with many people who are glad to see each other or meet each other. Artist and patient advocate Regina Holliday not only painted up a storm, but led a group in singing a song about caregiving. Need I say more.

But missing at MedX: Not many older patients with mundane chronic illnesses, i.e. the kind of Medicare patient with multimorbidity that I often write about. Hope to see some arrive at future conferences. For now, less common diseases and cancer are especially well-represented among the e-patients at MedX. (One e-patient present is allergic to his own semen; now there is an unusual condition although spending months with non-specific symptoms while being blown off by doctors is unfortunately not so unusual.)

Summing it up

Stanford’s Medicine X describes itself as “a catalyst for new ideas about the future of medicine and emerging technologies.”

It is this, but mainly it struck me as a catalyst for new ideas about what an academic medical conference can and should be, especially in these days of new technologies and shifts in the culture of medicine.

In particular, the Medicine X conference demonstrates how the presence and participation of patients makes a medical conference much much better, mainly by adding a much needed dose of inspiration and reality-grounding, as well as crucial perspectives to help us learn and problem-solve.

It is far too easy, as healthcare professionals, for us to get wrapped up in our own expertise and in talking to other experts. Healthcare is ultimately supposed to make the health and wellbeing of regular people better, and in clinical care, we do this best when we establish effective collaborations that enable us to help people with their health concerns.

Patient participation at academic conferences shouldn’t be a luxury, a curiosity, or a special feature unique to Medicine X. It shouldn’t be optional to learn from patients and get their help in solving healthcare problems.

Larry Chu has said he’d love for people to copy his conference ideas. I hope other medical conference organizers do so soon. They might start by studying the MedX conference schedule and the videos on YouTube.

Leslie Kernisan, MD MPH, is a practicing geriatrician, cautious techno-optimist, and enthusiastic caregiver educator. She hopes to someday be surrounded by cool tools and innovations that will make great geriatric care totally doable for all, especially primary care providers and family caregivers. She is a regular THCB contributor, and blogs at Geritech.org and at drkernisan.net.

22 replies »

  1. Matt, I’m glad to hear it was “a teasing comment I made.” As your charming self well knows :-), this is the price one pays sometimes for dropping snark without smilies. Those who know you in person can detect it in person, but even though I’m one, I took it wrong here.

    Looking back at it, which part was teasing? “Et tu, Leslie” or “let’s cut the crap”?

    (I’m not trying to aggravate her – trying to get clear. And in my own remarks I truly laboured a bit to be clear about what I was pointing too… had I been a nasty, I would have just said “Go research some junk, you duff git.”) (Or something faux Brit.)

    I think I’ll go get on an airplane. There, that sounds fun!

  2. Casey, I’m really beyond caring. Leslie, you, Dave, Afternoon Napper et al get very excited about a teasing comment I made about Leslie’s gushing. I point out IMHO that MedicineX is doing nothing that Health 2.0 and many others havent done already–and as far as I’m aware hasn’t given corporate sponsorship or any help to SPM–and all I get is abuse about asking you “to beg” which BTW is (by my understanding) less than MedicineX does when it asks you to fill in a scholarship application.

    And you may be a honorable person with something to bring to the table, but I assure you that many people running small software companies with the intention of making money will take advantage of anything they can get, including posing as “patients only” to save even a reduced entry fee–which is the equivalent of asking Health 2.0 to pay for them the same way we are paying for patients to come. So I dont think it’s unreasonable to ask about that on the form–which BTW revealed that about 30% of “patients” were in that category.

    And, as you discovered that form which asked you about any role at a software company, the process to come for free as a patient can’t have been that invisible.

    But really I’m feeling kind of done. Maybe I’ll keep trying to support ePatients and SPM but as far as I can see it costs Health 2.0 effort and money and gets us little thanks and much abuse. We can be one of those conferences that puts “patient engagement” in the title and ignores patients, just like the ones the crowd on the SPM newsletter abuses. And as far as I can see we’ll be better off.

  3. Thought-provoking post, and even more thought-provoking comments. How very sad, but unsurprising, to see silos have developed within the effort(s) to transform one of the most silo-ed of industries.

    I was named an ePatient Scholar to MedX this year, and am still digesting all the mental meat I was fed over those three days. I didn’t ask for a scholarship to attend Health 2.0 because the tone of the invitation to do so made me feel like a beggar. I’m broke – thank you, combination of divorce and cancer! – but didn’t really feel up to begging for a seat at the table.

    There’s no doubt that I missed some great content at Health 2.0, and that I missed opportunities to connect with some terrific people. Instead of carping at MedX, why doesn’t Health 2.0 create a more visible process for patients to get scholarships and/or discounts? I’m all about snark, but snarky invitations to beg for something while simultaneously proving I don’t run a software company (as if) don’t have me leaping at the opportunity. I like to think I bring something to the table beyond scraps’n’crumbs.

    Glad to see that the 2014 schedule for both MedX and Health 2.0 aren’t on competing dates. That’s a start …

  4. You have put together some really interesting point here, there should be a bit more “touchy feely” interaction.

    this sentence below really struck a cord with me – something I wish would happen here in the uk .
    “It’s another altogether to welcome them as active participants in solving healthcare problems, and in this arena the MedX conference sets an important example that all academic conferences should consider copying ASAP”

    thanks for the great post leslie:-)

  5. Just to clarify one matter that is key to understanding MedX vs. any other conference: our scholarship program is about more than attendance or putting patients up on stage. The program is a competitive program with scholarships awarded on a merit-based system, as we see out ePatient who are established leaders and rising voices. In addition to providing entry to the conference, we award full and partial scholarships that go toward covering our ePatient’s costs including airfare and hotel accommodations, plus breakfast and lunch at the conference (and one orientation dinner). From a personal perspective, this kind of scholarship is what allowed me to participate in Med 2.0 at Stanford in 2011. Otherwise it would be out of the question—and to this day there are many conferences that I’d love to attend, but all conference organizers are willing to do is let me in the door. While that’s a start, it doesn’t jive with my financial reality. I’d love to see more conferences making the effort not only to “include” patients, but to actively support their inclusion such that while we are fighting to be heard, we are not also going broke.

  6. Sorry for the delay in responding.

    With respect, Matt, you completely missed the point of my comment. Either you were too hurried or, more likely, you truly don’t get what Leslie and Nick and I are saying.

    Having some patients involved – which you indeed have done! – is WHOLLY DIFFERENT from having the whole conference be TOTALLY BUILT AROUND AND BY e-patients. What you do is valid and appreciated, but WHOLLY different from Medicine-X.

    I’ll make a comparison to a policy issue. Lots of people are talking about patient-centered care, or listening to patients. But last year the IOM published a report (Best Care at Lower Cost) that said a learning healthcare system must be “*anchored on* patient needs and perspectives.” Quite different from “While you’re doing what you do, now and then ask some what they think.”

    Again I acknowledge what you’ve done for years. And I ask you to hear us in saying that Medicine X is wholly different. I’d read what Susannah had written, but this was my first year attending, and I got it, bigtime. You could say that event is “anchored on patient needs and perspectives.”

  7. Leslie – thank you for this post – both for its wonderful content and the catalyst of a conversation here in the comments.

    Dave – a quick note to say thank you for your comment. Speaking personally as someone with a great affinity for Medicine X, it is nice to hear. Speaking as someone associated with the ePatient advisory program, it’s validating and heart warming.

    I’ve said openly and will continue to say, working with Dr. Chu and the ePatient team, particularly around this year’s event, has been one of the most rewarding things I’ve done in my career. I think Sherry’s words capture the reason behind my feelings: “we were at the birth of a new tribe and culture and are seeing the movement….”

  8. Dave, the title of the post is from the THCB editors…sometimes they move in mysterious ways.

    I actually outlined this post before going to Health 2.0, and did not have a comparison between the two in mind when I wrote it…they felt like very different conferences in size, scope, emphasis, and internal underpinnings.

    Anyway, this post is about what other medical conferences sponsored by academic institutions can learn from MedX. But people will read into it what they will…

  9. Dave, you may have forgotten Amy Ternderich’s role on stage at Health 2.0 in 2007, Gilles & a bunch of others in 2008. yours (twice) in 2009, (not to mention Jen McCabe, Amy again, Trish Torrey & many more), then the introduction of Patients 2.0 as suggested by Gilles, with Regina on stage, then a bunch more Patients self selecting to be on the main stage at the fall conference with senior gov officials, after having their own conference session (not one just centered around them) in 2010. But I havent 🙂

    And as I’ll say repeatedly, we weren’t the first, and we’ve been at it since then

    When Lucien introduced his Paitents Included badge in 2011 instead of just adding Health 2.0 to the retrospective list as I requested he asked me to somehow prove our commitment to earn the badge, so being the cantankerous bastard I am you can imagine that I didnt feel any need to bend over backwards to do so.

  10. Great post, Leslie, but I don’t get the title, including its asterisk, which seems not to be explained later, unless I’m blind (which I may be). Explain?

    btw, for this blog’s less-patient-oriented audience, we should note the source of the “Patients Included” meme and badge, which MedX proudly displayed: http://dave.pt/patientsincluded (by Lucien Engelen).

    Matt, as you know, I planned to be at Health 2.0 but wasn’t able to – did you display the badge? (Or at least qualify for it.)

    Leslie, I imagine you didn’t see Susannah Fox’s post on her own blog The magic of Medicine X, including the comment thread.

    Matt, I imagine you’ll see there the additional aspects of what Medicine X brings (including the sometimes emotional & spiritual comments, something that I haven’t heard mentioned re Health 2.0 :-)). Having been there this year, I can say there’s no doubt it’s palpably different. As Susannah has said, it seems to be the only conference that’s palpably ABOUT the patients – literally centered AROUND them – the front rows are reserved for the “e-patient scholars,” who receive stipends to support their presence, e-patient advisory panel (heavily involved in designing the whole conference).

    Or Sherry Reynolds’ comment: “Many of us who where there had the distinct feeling that we were at the birth of a new tribe and culture and are seeing the movement from individual to us to shared values.”

    Check it out. This event really isn’t just about whether there are accommodations for patients. (And I say that knowing full well how much I love you Health 2.0 guys! This isn’t a diss, it’s an attempt to point something out.)

  11. Fantastic post, Dr. K – and personally, I don’t give a flying fig if Medicine X was the 3rd or the 20th or the first to include patients “on the stage, in the audience and at the microphones” as Dr. Larry Chu likes to say.

    And really, who cares? This isn’t a pissing match, is it? Why try to make it so, Matthew?

    The point is, *somebody* is doing *something* to include patients in a meaningful fashion other than as a tickbox to co-opt patient engagement. I encourage you to read Scott Strange’s post on this topic on KevinMD: http://www.kevinmd.com/blog/2013/10/patients-marginalized-health-conferences.html

    I attended MedX on an ePatient Scholarship in 2012, and personally I applaud the distinction between patients who are (according to the scholarship criteria) selected for free registration based on their “history of patient engagement, community outreach and advocacy.” I’m active in a number of patient organizations, and I know there’s a big difference between patients – and patients.

    I may be “motivated” and “more medically sophisticated” compared to some, but as a heart patient living on a small disability pension, I can tell you that I’m not of “higher socio-economic status” and would never in a million years be able to afford to attend without scholarship assistance.

    And I too look forward to more emphasis at MedX and other like-minded conferences on inclusion of and focus on older adults living with chronic illness

  12. It’s true, I don’t think anyone has yet passed the “tools for older complex patients” test…

    Anyway, this post is about academic medical conferences, which I think MedX is and Health 2.0 is not. Apples to oranges, no?

    I have to say, I didn’t think I was being THAT critical of Health 2.0…just because I didn’t see much that seemed likely to revolutionize the care of the Butler family doesn’t mean it’s not interesting & innovative.

    (Maybe now is when I should disclose that I went to both MedX and Health 2.0 on a press pass as a THCB writer, ergo courtesy of Matt letting me start posting here. Thanks again boss!)

  13. Afternoon napper, you think this is hostility? Ha ha, as Dustin Hoffman kept saying in Wag the Dog. “this is nothing”. (You should see what I write about people I am actually opposed to)

    I have heard great reports about MedicineX and I fully support it and the great work everyone there is doing. All I’m doing is (and here repeating what I said on Twitter from that webinar) saying that what they’re doing is nothing that new.

    And as for helping the ePatient movement, my exact point is that the things I control (THCB & Health 2.0) have done all they can to promote ePatients into the dialogue, including Health 2.0 being a paid up corporate sponsor of SPM, having employed both its Secretary and former Vice President–both of whom were “lent” to the organization spending time while they are on H20’s dime. We also let patients in for free for the conference (which BTW costs us about $500 each)

    And mostly I’m teasing Leslie who basically wrote a pretty critical piece about H20 while fawning over MedicineX–even though they both had the same fault (not enough focus on complex geriatric patients). I’m just pointing out that MedicineX is not the only conference that cares about ePatients.

    And yes I own THCB, but that doesn’t mean I wont print things I disagree with, but like any other punter, I get to have my say about them in the comments. Agreement and restraint not necessary here, although a sense of humor is!

  14. Matthew –

    I’ve noticed a real trend of hostility from you toward MedX, which I have to say that I don’t understand. I’ve witnessed this hostility here and previously on Twitter when you mocked Dr. Brian Vartebedian and Dr. Wendy Sue Swanson for their involvement in MedX and support of it.

    Full disclosure: I am one of the patients on the ePatient Advisory Board for MedX. To my knowledge, those of us affiliated with MedX are not claiming to be the first or the best or the only or any other kind of superlative. I happen to enjoy the conference. I enjoy being a part of an effort to amplify the patient voice in medicine. It’s almost as though you resent MedX for making people (like me) happy, for providing an enjoyable experience. Why?

    Given that you are listed as the founder and publisher of The Healthcare Blog, I also find it interesting that you’ve chosen to a) allow this piece to be published and then b) heartily criticize what’s said. If you so disagree with the piece, why permit it? Opinions are indeed opinions, but if you feel that what Leslie has written is WRONG, do you not have the responsibility to correct it from an editorial standpoint?

    If you wish to continue to knock our efforts to help patients, so be it, but as it stands, I — as a patient — only see this kind of criticism as knocking the efforts of those who are working extremely hard to further the ePatient movement. Perhaps I will regret having addressed the seeming rift between you, Patients 2.0, and MedX; however, I find the continued hostility to be unwarranted and damaging to the overall healthcare and social media community.

  15. This was my first year at Stanford Medicine X and I value the experience. I am a 5-year patient advocate (FDA-trained Patient Representative, Society for Participatory Medicine member, Health 2.0 2011 participant, Walking Gallery member, Consumers Union Safe Patient Project member, PCORI grant reviewer, etc.). I was late to apply for ePatient scholarship. The real need for patient outcome data from implanted medical devices to be shared with patients as a component of informed consent was broached. Patient harm from failed devices is mounting and patients are unprotected (or exploited!) by the medical and legal system. Medical device implants must be researched long-term for their value to patients. This topic requires a tighter focus next year, and a creative research solution!

  16. et tu Leslie? MedicineX sounds like a great conference but lets cut the crap about it being the only one having patients on stage. Health 2.0’s done that since 2007, including panels with leading ePatients, and putting them direclty on stage with gov officials — with a representative group chosen by the patients. We’ve had Patients 2.0 since Gilles Frydman asked in 2010, And we were no where near the first. The Center for IX was doing this back in the early 2000s and several others before that.. Jeez, I had epatients come to meetings I ran at IFTF back in the mid 1990s.

    So while I think it’s great, it aint no new thing. Well it might be for a really academic conference, but I’m not sure MedicineX is that

    And one small side note, MedicineX charges patients who dont get a scholarship money to come. (I dont know how many got scholarships verus were charged money) Health 2.0 lets in all qualified patients (e.g. ones who are not actually running software companies) for free.

    Still glad to hear that Larry & the gang failed your “tools for older complex patients” test just like we did too….perhaps in the future more conferences can collaborate on patient participation….

  17. My entire medical career, I’ve dreamed of touching patients through technology. Early-on, my attention was on diagnostic technology for physicians to use at the point of care. Over time, my attention has shifted to online interaction with the patient. My passion is the transition of medicine from atoms to bits.

    The sentiments in Leslie’s and Rick’s essays are at the core of a successful transition from atoms to bits. Unless our technology can capture, transport and reflect the spirit of these essays, the heart of the medical profession will not survive the digital transformation.

    It’s early days but there’s already a lot to do. As with other things we mention in this group, current practice leaves much to be desired. Two specific examples are: information symmetry and open source.

    Information symmetry means that patients have equal access to personal clinical information either by default or with the physician’s concurrence. HIPAA and common practice do not require equal access by the patient to her own data and most physicians go along with such policies. What the physicians don’t realize is that technology is being used to manipulate them them along with the patient. Institutions, not physicians or patients, purchase today’s information technology and the institution is more interested in preventing patient “leakage” to unaffiliated providers than in supporting a trusting physician-patient relationship. For example, as we move to secure messaging in EHRs, physicians have lost our ability to message anyone we chose, including the patient, the way we did in the analog fax world or the paper mail world. This is not a positive change as we move from atoms to bits.

    Open source means medicine that’s not secret, peer reviewable, locally modifiable and openly teachable. In the print-on-paper (atoms) era, medical knowledge was universally open source. As more and more medicine moves into digital software, secrecy abounds, peer review becomes “certification”, local modification becomes impossible, and our students need to buy a license before they can do what we do using our licensed software. Physicians are ceding control of medicine to vendors. This is not a positive change as we move from atoms to bits but I know almost no physicians that openly object.

    I could go on. Please contact me for more examples and details.

    The deep ethical and clinical implications of Internet-age technology are in plain sight but out-of-mind for most patients and almost all physicians. Please reflect on the digital enablers of Leslie’s and Rick’s sentiments.

  18. “And there is some truth to the common objection that I hear: “But those e-patients aren’t like most patients. They’re more motivated, more medically sophisticated, and often of higher socio-economic status.”…”


    One word: Camden.