WHAT’S ENGAGEMENT NOW? EXPERT SARAH GREENE DISCUSSES EMERGING CHALLENGES

By Jessie Gruman

April 2, 2014

This interview with Sarah Greene is the ninth in a series of brief chats between CFAH president and founder, Jessie Gruman, and health care experts – among them ourCFAH Board of Trustees – who have devoted their careers to helping people find good health care and make the most of it.

Extreme Openness: Sparking Progress through Patients, Researchers & Clinicians

Gruman: Building communities of engaged stakeholders is a theme that runs throughout your career.’  Tell me about the different ways you have worked on this.

Sarah Greene:  I discovered somewhat by accident ‘ early in my career — that science makes faster progress and produces better results if more people with a range of different expertise are brought together. In the past 10 years, I’ve extended this belief to patients’ participation in their care.

Gruman: How did you move from working as publisher focused on basic science to health care?

Sarah Greene: I helped create innovative ways to share and develop molecular biology lab protocol manuals across diverse organizations and settings in the first company I founded, Current Protocols. I got into the health business by trying to recreate this approach with Praxis Press, a company that provided point-of-care online information to clinicians. We wanted to create a product with more usability, rather than just posting an existing textbook. For each health condition, we developed patient-friendly descriptions of the clinical information that could be customized and printed out by doctors

To keep the content updated, we needed to scan the scientific literature for important findings, so we started a news service and worked with clinicians to try to define and link to good evidence.’  We also published a Web-based magazine that included patient narratives and articles about the culture of medicine.’  We thought it was important to bring the patient experience to the clinicians and researchers, even though this was before people were talking about empowered patients.’  Anyone could read it ‘ you didn’t have to subscribe and it became pretty popular with a lay audience in addition to physicians.’  My business partner and I sold this company to Thompson Healthcare in 2002.

Gruman: And didn’t you work on the very early version of The New York Times Website?

Sarah Greene:  Yes. I was hired to develop the Times’ deeper Web content in health and helped launch the Well blog with Tara Parker Pope in 2006.’  By this time, people had really started to want to talk with each other and the broader community about health and health care.’  The world was a different place.’  Take, for example, the Patient Voices feature ‘ it’s a simple slide show ‘ coupled with an audio track of five or six patients describing their struggles with a single condition.’  It’s amazing how powerful those patients are!’  I could see that this was just a tiny piece of what you could do to include patients in the equation.

After I left The New York Times, I spent a while as the founding managing editor of the Journal of Participatory Medicine‘  (JoPM).’  It was there ‘ actually, through putting together the inaugural issue with you, Jessie ‘ that I started to see the full potential of patients participating in their care.’  There were some powerful articles in the JoPM as we attempted to define this emerging field: one by Gilles Frydman on patient-driven research, another by Richard Smith on peer review and bias in publishing. Around that time I wrote an editorial that crystallized my thoughts on patient involvement, ‘Participatory Medicine as Revolution! Think Critically! Communicate!‘ And yet I despaired that this was reaching an audience that already was on board with participating in their care.

Gruman: And what are you up to now?

Sarah Greene:  Cancer Commons is a nonprofit translational medicine network that links cancer patients, clinicians and scientists in ‘rapid learning communities’ with the goal of developing precision therapies faster and getting them to patients faster. Central to the idea is that patients are treated as partners rather than simply as subjects.’  We hope that by closing the loop between patient insights and research it will be possible to speed the learning process and achieve better outcomes.

It works like this: Editorial boards made up of leading clinical researchers in each cancer curate molecular disease models (MDMs) that identify the most relevant tests, treatments and trials for each molecular subtype of that cancer. Patients and clinicians access the MDM through Web-based applications and content to inform their decisions about testing and treatment. More data is pooled from academic institutions conducting trials, clinical case studies, and patient-donated data and surveys, to interpret and discuss in forums that engage all the stakeholders. ‘ This collaborative conversation based on large and diverse datasets will validate or refute the current MDM. The editorial boards reach a consensus about the evidence under discussion and update the MDMs accordingly.’  So patients and clinicians always have access to the latest clinically actionable information.

We have seen some remarkable examples of patients joining with researchers to catapult research forward. The recent Sage Bionetwork Congress highlighted a few impressive examples of how researchers and patient groups are taking on this multiple-stakeholder model.’  For example,Kathy Guisti spoke about founding the Multiple Myeloma Research Foundation, after being diagnosed with the disease, and their successes over 10 years: building a tissue bank, collecting over 3,500 bone marrow samples, collaborating with researchers to sequence the myeloma genome, and networking with 16 clinical centers to initiate 40 trials, with 4 new drugs FDA-approved and nearly 2 dozen more in accelerated trials.

We think there are many more people with cancer who are actively engaged in their care who would welcome the opportunity to participate in a meaningful way with researchers.’  Many leading clinical researchers too have realized that collaborating on datasets and with patients is now possible with internet and sequencing technologies and that collaboration may be a necessity to make real progress in drug discovery. We hope, at Cancer Commons, to build the tools and provide the linkages that will facilitate collaboration and speed research.

I just read an inspiring book by Michael Nielsen ‘ Reinventing Discovery: The New Era of Networked Science ‘ which describes the power of crowdsourced data and expertise in the fields, primarily, of math and physics. In biology of course, the human genome project is exemplary, and Nielsen provides a roadmap for how these collaborations have succeeded (see his Ted Talk).’  Here’s a great quote from the book that captures this spirit:

In an ideal world, we’d achieve a kind of extreme openness. That means expressing all our scientific knowledge in forms that are not just human-readable, but also machine-readable, as part of a data web, so computers can help us find meaning in our collective knowledge. It means opening the scientific community up to the rest of society, in a two-way exchange of information and ideas.

Thank you, Jessie, for the opportunity to discuss my latest project!

Original blog post by Jessie Gruman. Updated by the GW Cancer Institute June 2016.