Engage: Blog

Tom Workman | Oct 2013 | 0 COMMENT(S)

Attending Medicine X at Stanford University School of Medicine is as much an emotional experience as it is an intellectual one. The conference is designed to highlight the intersection of medicine and emerging technologies, but its focus is on patient-centered solutions through technology.

Patients take center stage here, and their stories bring tears, laughter, and large doses of humanity that leave attendees like myself responding emotionally to their passion and determination amidst incredible adversity, some of it caused by the system designed to help them.  While there are many technologists and designers, academics, researchers, and health care providers (and one incredible 16 year old who turned early cancer detection on its ear while still in high school) in the room, e-patients and their stories drove not just the first day’s e-patient symposium, but resounded across the conference.  The conference planners ensured that these patients told their stories in every main stage and breakout session.  More importantly, the patient perspective was at the center of the agenda itself – the sessions focused on issues of most importance to patients.

Of course, a few “e-patient” celebrities were there– Dave deBronkart and Regina Holliday, among others. They articulately represented the patient perspective and empowered new change agents with sincere and unmatched passion. But the conference also brought many less famous e-patients and e-doctors (a growing crowd that are also not waiting for their organizations or other engagement efforts, and well represented at MedX). Together, they blog, tweet, and connect through the Internet to ask questions and get answers, find options, and create new pathways to care (and cure) for their conditions outside of (and often in spite of) the formal health care system.

The overarching lesson from the weekend was crystal clear:  There are patients across the planet—many more than we collectively realize– who are not waiting for a health care organization, health plan, outcomes research team, private foundation or government agency to engage them. They are not waiting for clinicians to activate them. They are not waiting for an invitation to sit on a hospital advisory panel (though they will if asked). They’re not waiting for PCORI or AHRQ or any Federal effort to provide evidence, establish a committee, or develop a plan to fix all that is broken in health care.

They’re getting what they need (or some of it, anyway) by engaging each other —through blogs, Twitter, Google, and online communities.   e-Patients are finding  e-Doctors.  They are finding data, and open access research, to guide them. They are finding other narratives And together, they are leaving traditional health care institutions far behind. A common mantra here is a future vision where health care is open access, driven by individuals, and happening outside of the medical institution as we know it.

The concept of patients getting online to get what they need is not new. WebMed, HealthCentral, and hundreds of other disease-specific online patient communities have thrived with patient activity in ways that Meaningful Use efforts can only envy.  Mobile applications for health tracking are flourishing, despite the research that suggests that the average use for most patients is ten days. Twitter is alive with patients–#MedX was the number 1 trend for most of the weekend.

There are gaps, certainly.  The room was largely white, and represented a socioeconomic class that didn’t quite reflect the patient population nationwide (the underserved, for example, were clearly absent).  E-Patients—particularly those who advocate and are engaged with medicine—are a somewhat privileged group in that they have the time and access to the internet, which are still luxuries for many patients who are less engaged or empowered.  Not all the stories told have led to collective resonance or action; some dangled, compellingly, waiting to be transformed into plausible solutions.  But these gaps are far from forgotten here, and addressing them was part of the conversation.

As we design pathways and tools to engage patients, we must remember that we are not creating empowerment or engagement as gifts we give to all patients.  In many ways, we are harnessing an energy that is manifesting around us, and often without us.  The challenge for health care organizations us to connect to the brilliant patient-generated solutions that are being created and implemented and then integrate them into creating patient-centered health care. How well we tap into the passion found at Med X and the creative solutions it represents is the critical question.

Tom Workman

Tom is a principal communication researcher and evaluator at AIR and manages projects related to patient, consumer, and stakeholder engagement in health research, policy, and communication. He is a nationally known expert in managing health culture change and has extensive experience in...