MedX: Patients, Conferences, And The Return On Investment

One of the sessions I attended at MedX on Saturday September 6th, 2014 was on the topic of Social Media, Games, and Wearables.The first presentation was by Thomas M. Lee (@tmlfox) from Symplur (

Thomas’s story was about the value of patient participation in medical conferences. He started at a high level with analyzing close to 2000 medical conferences. From there he was able to review conferences that had 1000 or more tweets, and reduce that number down to about 100 conferences.

At that point, Thomas and his team had to review each bio via twitter to decipher of those tweeting, who was a patient and who was not a patient. What Thomas and team were able to deduce was that there were 198 unique patients that occupied 279 influencer spots across the 100 medical conferences. Which means that patients attend more than one conference per year.

What this boiled down to was the simple fact that patients account for 1% of the total attendance at most medical conferences. In addition, when it comes to social influence and dialogue around most medical conferences, patients again only equate for about 1%.

Staggering when you consider the fact that the reason all of us are in medicine is to serve the patient.

If it isn’t well known, MedX has the highest inclusion of patient participation and inclusion of all medical conferences, even higher than TedMed. Impressive.

Thomas’s final conclusions were that those conferences that included patients performed better via social media and had far reaching social impact. He also went on to state that when all 3 groups of people are part of the same conversation, 3rd parties, patients, and providers that conferences produce wider and more clear stories.

Then Louise Schaper (@louise_Schaper) asked the million dollar question, “If there is social impact with patients attending medical conferences, how do we get industries to support paying for patients to attend when conference promoters and industry are looking for a financial ROI?” (ROI=return on investment)

The response from Thomas just about caused me to leave the conference immediately. His response, “It is good PR, public relations.”

If I as an industry “insider” (I have worked on the provider side and now work on industry side) can see the value in patients attending, how is it not as clear to others?

ROI is a vanity metric. It is a metric that business leaders like to use to show they are smart. So is social impact. Another vanity metric. If you ask me, there is a better was to view the real “impact” between patients, medicine, and industry…defining the problems that need to be solved.

Whether it was Marie (@JBBC), Janet (@JFreemanDaily), Britt (@HurtBlogger) or any of the other patients who spoke at MedX they all have a story. They have an insight as to their experience specific to their diagnosis. They see how healthcare is practiced to the majority, how it is distributed, and how healthcare is accessed. They have and still live the good, the bad, and the so-so of healthcare.

In a time when there are fewer dollars to be spent on research, new or better drugs, or even new technology, doesn’t it make more sense to understand the daily problems patients experience and focus on those breakthroughs?

Why do we in healthcare sit in our crystal palaces and dream of the latest and greatest thing we want to develop, research, or explore ? Why do we forget those that use our services, devices, and medicine and pay for our livelihoods? Why do we not ask the experts, the patients, what the problem is and have them help us define it?

Why do we jump to answers before collaborating and listening?

This is the real ROI of patients attending conferences. Having the experts (patients) collaborate with the other conference attendees to define the problems that need to be solved.

Then the researchers, scientists, physicians, and industry can pivot and plan their budgets on where to spend their time and energy.

If we did this collaboratively, could we make bigger impacts in healthcare more quickly, more timely, and by spending less dollars? Do we create a culture of win-win versus win-not so much win?

The ROI of patients attending medical conferences is NOT about a financial return on investment.

The ROI story I prefer to tell is the “Realizing Outsiders Insights.
As always, you can feel free to contact me at: CANCERGEEK@GMAIL.COM or follow me on twitter @cancergeek


#PtExp #PX #cancer #hcldr #hccosts #hcsm #stories #storytelling #lcsm #bcsm #hcmktg #mktg #storyteller #hcpt #consumerism #hcbiz #CX #UX #UI #Bioethx #storytelling #stories #ContentMarketing #HIT #PX2014 #moodring #ring #health #wellness #MedX

5 responses to “MedX: Patients, Conferences, And The Return On Investment

  1. Thanks @CancerGeek for the post. I was the one who asked the ‘million dollar question’ at MedX. My reasons for asking it were because of the sentiment that was being expressed that “meeting organisers” are not inviting patients onto conference programs and they should.

    I run a non-profit and we run conferences. Despite efforts over several years only once have we been successful in getting a company to understand the value of them providing scholarships for patients to attend our events and to sponsor patient speakers. The sponsorships we secure from companies is vital to our financial viability. The funds companies use comes out of their ‘marketing budgets’ and the way they measure success that their marketing spend has delivered results is in the amount of leads for product/service sales. Positive PR, social good etc just doesn’t factor into the way they measure their success.

    We have had the patient voice on the stage, but we have had to fund it completely ourselves.. which is unfortunately not sustainable when you run ‘on the smell of an oily rag’ as many of us non-profits do.

    I was hoping that my question would generate discussion and ideas that we can use to convince companies of the value of their investment in supporting patients. Your blog will hopefully add to this.

    The patient voice is so critical for the reasons you mentioned in your post. In addition, I believe the patient voice is critical as it reminds us why we do what we do, why it is so important we succeed and why there must be a sense of urgency to our endeavours.

    We will keep at it…. @louise_schaper

  2. I’m glad you DIDN’T leave!

    Voices like your’s are so needed in this space, and I support the observations made in response to my comment.

    When the question was presented, my own frame of reference was, “Well, if what I’ve already said about the value of patient participation wasn’t enough to suggest that a conference will be able to have greater and more meaningful reach (and assuming that the sponsor is aligned with the conference objectives), then all that’s left is to appeal to the ROI.

    Our hope is that studies like this will begin to provide real evidence to all (conference organizers and sponsors alike) that patient inclusion is a good thing for all stakeholders. In the end, we believe that it will show itself in the form of improved experience and outcomes for the patients that we all serve. Those are the ultimate measuring sticks. And for what it’s worth, we’ve already got our next study in planning.

    However, we also realize that reality demands the need for a process to get from where the industry is and where we feel it needs to be. And, while not wanting to ignore those conferences who have so generously accommodated the patient voice, unfortunately, there are many organizers, sponsors, and otherwise interested parties that have limited, if any, insight into this new, unfolding landscape. The web, social media, and patient inclusion aren’t factors that they are accustomed to. And, like most businesses, when confronted with a new set of circumstances/options, one of the first questions asked will be, “How is this aligned with our goals.”

    When confronted with uncertain things, most organizations will defer to what they know. And in this case it’s unfortunately ROI. It’s IMPORTANT to understand that, because understanding the barriers that lie ahead will help to design the steps needed to march toward success. As such, and we may not like it, but addressing ROI is going to be a hurdle that MUST be cleared.

    In that context, the ROI for an organization who is being asked to fund patient attendance at conferences needs to be placed into terms that can be traditionally understood. Some may “get it”, and act accordingly. But I think the question asked by @louise_Schaper probably displays the more common, current scenario that most don’t “get it.” So how do we address that? One option is to let them know that they will benefit from the social capital of “doing what’s right and being the good guy.” Sure, it may be a PR move, but if PR get’s things going, then I’m good with that.

    Let’s recognize that we’re like tug-boats. We’re constantly nudging these huge ships in the direction that they need to be going. In the end … they’ll likely all dock safely. What’s more, the tug boats will ultimately become viewed as a respected and necessary part of the process.

    Thank you so much for initiating this discussion. Let’s hope the right parties are paying attention.

  3. Generous of you to characterize ROI as a “vanity metric.” I’m less kind during these types of conversations.

    Observing how a measurement anchored in finance has been twisted into a metric for something that simply cannot be ascribed a dollar amount that makes any sense on any level makes me even more fierce than I already am. Imagine that.

    When it comes to assessing the value of patient (and caregiver) participation at medical conferences, I suggest that ROO (Return on Objective) is a better place start, both conceptually and practically.

    • I couldn’t agree more, Meredith. Seriously. But I’m also a realist, and a longtime operations guy in healthcare. My job has always been to “get the work done that will result in meeting the objective”. So I tend to focus on understanding the mindset of those organizations who have historically sponsored healthcare conferences. Failing to do so is assuring failure of the objective.

      You, I, and many others in this space “get it”. The problem is that the majority of sponsors aren’t there yet. They don’t live in this space like you and I, and they don’t “get it”. Holding that against them isn’t universally fair, and it’s important that we understand that. We went though a process to get to our current level of understanding in what’s a rapidly evolving space. Huge organizations that can help to fund patient inclusion are made up of many people who collectively steer the mindset and consequential decisions of the organization. They can’t turn on a dime like we as individuals can.

      So the question is, “How do we properly enlighten these organizations to understand how funding patient inclusion is parallel with their own objectives and those of the conferences that they already support?” This is a concrete issue that needs to be successfully addressed. As such, concrete solutions need to be placed on the table for discussion.

      I believe that the research study I shared at Medicine X is a step in that process. It’s something that can be officially pointed to. Also, we have additional studies in mind that we hope will provide further evidence that we hypothesize will strengthen our argument. Time will tell. But absent of that, we collectively need to feed organizations information that can enlighten them with actionable insights. So let’s get real and list them here. Let’s give them something to directly and specifically contemplate that translates to their own interests and how to use their own money.

      If we ignore that, then we’ll continually fail, just like @louise_Schaper stated in her comment above. And failure is not an option.

  4. What a fascinating discussion 🙂

    One more perspective on this would be that on the road to reforming itself as a socially-informed industry, pharma still needs to ‘see’ (or rather more accurately, many but not *all* people within pharma need to see) a direct, tangible benefit to their full participation in social.

    All the above is in shorthand form (e.g. ‘value’ inheres in many other forms; different stakeholders define ‘value’ differently (NB the wave of empathic value that swelled over MedX this year); is ‘value’ even the endpoint that progressive pharma should be pursuing, etc. etc. etc.), so please allow this to stand for the sake of argument.

    One idea that I have been mulling over since MedX is the way that progressive, socially competent US pharma companies could begin by withdrawing from DTC advertising.

    Among the other benefits this would bring, funds and resource that were formerly poured into the (IMO) reputation-jeopardising (and therefore business-jeopardising) advertising space could be productively channeled towards supporting the active involvement of the patient voice at IRL events courtesy of travel bursaries and cost-of-attendance stipends.

    More about this on the most recent post.

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