[This post was first published on The Health Care Blog on 10/25/13.]
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.