An academic conference where everyone is included

by Larry Chu, MD

Recently, I asked a group of our closest Medicine X friends and colleagues to join me for a three-day spring retreat in Washington, DC. As I looked around the room, I saw something remarkable.

Participating in the discussions about the future of Medicine X were a doctor, a nurse, two pharmacists, an Internet geologist, a hospital administrator, a policy leader, three patient community builders, artists, designers, and a dog.

Our conversations about our values at Medicine X mapped out concepts such as “give every person the dignity they deserve”, “value and respect the experience each person brings”, and “give everyone permission to be human.”

At our founding four years ago we set out to create a world-leading patient engagement program where:

  1. At least 10% of our seats would be allocated to patients;
  2. Selection of patients for our programs would be merit-based and needs-blind, and conducted in a peer-reviewed and transparent selection process;
  3. Travel, housing and program scholarships would be awarded on a financial-need basis;
  4. Wellness programs would be created to care for our patients and delegates;
  5. Free open-access video livestream and social media would be used to engage those unable to attend in person and join the conversation.

Because of these founding principles, we are sometimes referred to as “the patient conference”. Our conference tag line at inception was “an academic medical conference designed for everyone”. We still believe a better future for health care requires everyone’s voice.

Including patients at health care conferences helps provide a vital voice to the problems that matter most to patients and their families. It can help uncover new insights into treatments and new opportunities to address unmet needs. Including patients helps everyone remain focused on the ultimate goal in health care: to create health together with patients.

Lucien Engelen’s #patientsincluded program is a laudable initiative which aims to include the patient voice in health care conferences. It is clear that a lot of thought was taken in crafting the guidelines for becoming a #patientsincluded conference. Recent discussions on Twitter have shown me that there is a growing interest for more conferences to include patients into the program. This initiative is one mechanism that might help conference organizers accomplish this goal.

However, Medicine X has already evolved beyond the #patientsincluded model.

In 2013, Medicine X created a student leadership program that aimed to bring students from all phases of training and all health care disciplines to Medicine X. We had pre-medical, medical, pharmacy, nursing and PhD students speak from the main stage, co-design the wellness programs, and engage from the audience of Medicine X. Better yet, these students worked together with our ePatient scholars to accomplish these goals.

 

Thinking back to our recent Washington DC sessions, the one word curiously missing from the group when defining our values was the word “patient”. In its place we found ourselves saying “person” or “individual”.

It is quite clear to us that patients are experts in many aspects of their own condition and the greatest untapped resource in health care. However, the glimpse of the future I saw in our sessions in Washington moved the needle beyond “patients” to “people”.

The magic of Medicine X isn’t just that we include patients in the program; it is that we always try to include everyone (doctors, nurses, pharmacists, technologists, researchers, industry, patients and caregivers) in the conversation about the future of health care. What seem to be missing from most medical conferences are the voices of the entire team working together to improve patient health and advance the potential of health care. Until conferences get this right, we will continue to be silos within health care talking to ourselves.

What’s important is not to simply make an effort to include patients, but to actually foster collaboration among all stakeholders while expecting patients to co-design the experience with all other stakeholders. And that’s what Medicine X does so well.

The excitement and energy from the time our Medicine X advisors spent together in Washington was electric. Our group represented nearly every facet of health care. Patients had seats at the table as people valued for their expertise in co-designing the health care experience.

There is room for many at the starting line of the “patient engagement” race and it is important to keep in mind this work is a marathon, not a sprint. Medical conferences should support the #patientsincluded initiative. Including patients is a great first step, but it doesn’t go far enough. It is just the starting block. At Medicine X, we have grander ambitions. We envision a health care system where all involved are represented and respected and where the patient voice has parity with all others. Creating true change will require engagement from the entire team.

What’s the future of health care that I’m excited to see? The one where #everyonesincluded.

 

Hugo Campos, Jamia Crockett, Nick Dawson, Gilles Frydman, Britt Johnson, Sarah E. Kucharski, and Christopher Snider contributed to this blog post.

Recent Posts
Showing 2 comments
  • Joanne Helppie
    Reply

    The MedicineX Conference indeed represents everyone when they allow a small grass roots organization, without academic or business affiliations, to present what they have accomplished.

    Our site was put up by a coalition of non-profits, for-profits, and community volunteers in 2010. This continues to be reflected in our 12-person Board.

    Thank you for letting us demonstrate a low maintenance cost site that gives access to local information and resources that support aging at home. This helps distant families assist in the care of their loved ones, besides local use for Clients and Caregivers.

  • Lucien Engelen
    Reply

    A couple of years ago i started to wonder how we could get patients involved in healthcare. At that point there were no patients involved in Healthcare conferences. With a blogpost i tried to ignite a discussion and change by creating the “#patientsincluded act” https://lucienengelen.wordpress.com/2012/02/15/no-show-patients-on-conferences/ .

    I was gladly surprised a lot of conferences followed the example like our TEDx(in Maastricht back then) where ePatientDave was our first keynote speaker. Next i discussed with some people wether or not to start using a ‘start-rating’ system (https://www.linkedin.com/pulse/20121028221145-19886490-ready-for-the-stars-patients-included) and decided that this was, at least at the given point not the way to. To me the discussion was the most important part, that will create the change over time, not a rating. When Also the BMJ as per our advice started to work with patients even als peer reviewers, we were glad to see this uptake, and wanted to encourage them with the first ever “#Patientsinclude award” https://www.linkedin.com/pulse/20140618060741-19886490-britisch-medical-journal-bmj-is-patients-included

    When Andrew Spong reached out to me with the idea to create a charter for #patientsincluded i decided to support that effort and lend them the (trademarked) Logo. We discussed the clauses might need some iterations reflecting to current conferences we all think of as #patientsincluded.
    Other than a lot of conferences in the healthcare space to me “Larry’s” conferences are really #patientsincluded. So i was curious of Medicine-X would ‘qualify’, although the qualifying aspect to me wasn’t the goal.
    Reading the blogpost of Larry and other great people’s support, i get the need of having everyone at the table, really. On the other hand there was NO lack of doctors, industry and payers at conferences in the past years. It came to my attention that mainly two important stakeholders weren’t : Patients and …. nurses ! For the latter i set stage for the #nurseincluded act”. Again just to ignite the discussion and awareness. A couple of years ago i started to wonder how we could get patients involved in healthcare. At that point there were no patients involved in Healthcare conferences. With a blogpost i tried to ignite a discussion and change by creating the “#patientsincluded act” https://lucienengelen.wordpress.com/2012/02/15/no-show-patients-on-conferences/ .

    I was gladly surprised a lot of conferences followed the example like our TEDx(in Maastricht back then) where ePatientDave was our first keynote speaker. Next i discussed with some people wether or not to start using a ‘start-rating’ system (https://www.linkedin.com/pulse/20121028221145-19886490-ready-for-the-stars-patients-included) and decided that this was, at least at the given point not the way to. To me the discussion was the most important part, that will create the change over time, not a rating. When Also the BMJ as per our advice started to work with patients even als peer reviewers, we were glad to see this uptake, and wanted to encourage them with the first ever “#Patientsinclude award” https://www.linkedin.com/pulse/20140618060741-19886490-britisch-medical-journal-bmj-is-patients-included

    When Andrew Spong reached out to me with the idea to create a charter for #patientsincluded i decided to support that effort and lend them the (trademarked) Logo. We discussed the clauses might need some iterations reflecting to current conferences we all think of as #patientsincluded.
    Other than a lot of conferences in the healthcare space to me “Larry’s” conferences are really #patientsincluded. So i was curious of Medicine-X would ‘qualify’, although the qualifying aspect to me wasn’t the goal.

    Reading the blogpost of Larry and other great people’s support, i get the need of having everyone at the table, really. On the other hand there was NO lack of doctors, industry and payers at conferences in the past years. It came to my attention that mainly two important stakeholders weren’t : Patients and …. nurses ! For the latter i set stage for the #nurseincluded act”. Again just to ignite the discussion and awareness. https://www.linkedin.com/pulse/20141113153613-19886490-nurse-included

    Regretting not being able to be at Medicine-x (just returned from a week in the US launching our diabetes solution together with Philips and Salesforce) , since i love the concept, content and people, i still think it is a pitty they didn’t register their conference as #patientsincluded. Since it is not an exam, it is listing the efforts (on a webpage) made to include patients. If that would lead to changing the clauses to me that would be part of the iteration of Andrew’s group that create the charter.
    That there is a bigger goal and mission i do like very much of course, but this could be a and/and as oppose to an or/or effort.

    So let me concluded with a bit of tongue in cheek Star Wars style : “May the patients be with us 😉 ”

    @lucienengelen

Leave a Comment