Next in our series, Mark Boguski, MD, PhD is both a personal and a corporate member, as co-founder with Dr. Alan Littleford of ResoundingHealth. If you’d like to submit your own reason, write to me. (This is not an “invitation only” series – that wouldn’t be like us! When a member submits, we put it in the queue.)
Why did I join the Society for Participatory Medicine? Because of its potential as a catalyst for epochal change in our healthcare ecosystem.
Speaking as a former pharmaceutical industry executive, the mission and mantra of the industry is to address “unmet medical needs,” a noble calling that represents the best and highest aspirations of drug developers. However, despite decades of time and many billions of dollars of investments in basic and applied research, technology development, and experimentation with different management and organizational structures by industry and governments, it still takes 10-15 years and between $500 million and $2 billion to develop a new medicine that, in most cases, addresses a single unmet medical need.
While still in the industry, it occurred to me that our definition of unmet medical needs was too narrow and that by, meeting the needs of the public for better access to existing medical knowledge and practices, we might greatly amplify the benefits of current therapies and perhaps even be able to enlist the public’s help in developing new ones.
During my transition from the pharma industry to academe, I began to study how consumers find and use online health information. I quickly came across the late Tom Ferguson’s e-patient “call to action” as well as Susannah Fox’s illuminating work on the Pew Internet & American Life Project. This became an important part of my overall due diligence to assess the consumer’s unmet needs and devise new strategies and plans to address them. After publishing my initial findings in early 2008 (a chapter (PDF) in Genomic and Personalized Medicine), I started work on a number of experimental approaches to increase consumer health awareness and medical knowledge (http://bit.ly/df4i3T, http://bit.ly/crkFzd) and also to provide new tools and resources (e.g. the PhotoCalorie app) to enable what I later learned was being called “participatory medicine.”
Because Ms. Fox’s work continued to loom large in my thinking, I made it a point to meet Susannah in person and visited her in her D.C. office in August of 2009 (even as we sat there having a discussion over coffee, she was multitasking with smartphone in hand). Susannah introduced me to Dave deBronkart, whom I also began to learn from and whom I finally met in person at his tag-team Grand Rounds presentation with Dr. Danny Sands in December of 2009. Danny and I are colleagues at the Beth Israel Deaconess Medical Center, which is a teaching hospital of Harvard Medical School (and also the official hospital of the Boston Red Sox, for you sports fans out there). Indeed, my “day job” is at BIDMC.
Another important influence in my thinking and approaches to online consumer health information was the 11 years (1989-2000) I spent at the U.S. National Library of Medicine, including three as an officer in the U.S. Public Health Service. On the B1 level of NLM’s Lister Hill Center for Biomedical Communications (Building 38A), there is an inspiring diorama of the physical evolution of the NLM since its origin just after the American Civil War.
The diorama shows the various buildings in and around Washington, D.C. that housed NLM’s collections for the 100 years prior to its current placement on the NIH campus in Bethesda, in a building that was completed during the Kennedy administration. I used to give informal tours to visiting friends of the vast underground stacks of the “ink-on-paper” medical knowledge that NLM began to make available in electronic form in the 1960s. My recent comments here on the weaknesses of consumer health information at the NLM & NIH should be interpreted as constructive criticism of institutions to which I devoted a significant portion of my career, which I admire greatly, and to which I perhaps added some value.
During the decade following my tenure at NLM, I worked in the private sector and enjoyed a wide variety of experiences that taught me to appreciate the creative power of entrepreneurial environments and the great agility and speed with which they can get things done. Social networks may be the ultimate expression of such environments and I view the Society for Participatory Medicine in this light.
One thing I worry about, though, is the current limitation of social networks to accomplish anything of measureable economic significance (except as advertising vehicles), which is an essential requirement to achieve certain kinds of goals. Another way to say this is that social networks operate in the “gift economy” without the advantages of a business plan or a revenue model, e.g. products or services that can be monetized. Some people seem to think that a business plan always means “profit motive” but this is a misconception – not-for-profit organizations need business plans if they’re meant to be sustainable. Even the venerable Wikipedia has asked for advice to help it act “more like a real company.”
I have thought deeply about these issues and proposed one model (Science, 2009) in which social networking might revolutionize pharma R&D. For a model like this work, however, certain legal and regulatory modernizations and reforms would have to occur and perhaps it is toward such goals that groups like the Society for Participatory Medicine could direct some of their communications resources and growing political influence.
Welcome, Mark and Resounding Health.
The coming year will be active for your Society. Participate!
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