Patient-Centered Research

Continuing our review of the recent special report on healthcare and technology in the April 18, 2009 issue of The Economist magazine, the writers further their discussion of patient empowerment and the bottom-up approach to tackling healthcare by looking at patient-centered research, which according to Gregory Simon of Faster Cures, an advocacy group in Washington, is “the key” to bigger things beyond the movement of patients to the center of the medical system, now just in its infancy. This type of research involves patients getting together online to share medical data and treatment histories, and while electronic health records (EHRS) might have initially been viewed by organizations as a way to cut costs or improve quality, some of the biggest gains might actually be outside of these areas. The business world sometimes refers to such gains as the result of successfully walking up the value ladder to provide intangible benefits beyond the financial. Many of us in the consulting industry can attest to such results. For example, while my work at a recent client to integrate proprietary clinical healthcare systems for use by thousands of providers might have resultant in significant measureable cost savings, the public healthcare benefits that resulted from this work are largely intangible and point to the greater good.

The article sites the PatientsLikeMe website, which enables individuals across the globe the exchange of information associated with drugs, adverse drug interactions, and their own ailments. According to a report by the California HealthCare Foundation, “the collective wisdom on this website may rival the body of information that any single medical school or pharmaceutical company has assembled” on multiple sclerosis, for example. Social networking in medicine has apparently arrived, with all the blogs and portals now available in this space, and Google already has a feature that permits users of its EHRS to share health information with others. According to Neil Seeman at the University of Toronto, the most active communities on traditional social networking sites like MySpace already center around chronic illness. Many physicians are now increasingly supporting use of these tools themselves, who have for some time been users of secure medical chat rooms. Thomas Lee, CEO of Partners Community Healthcare, views these medical chat rooms as replacements of the water-cooler chats of the past.

According to Steven Case, the America Online founder who later launched Revolution Health (and for whom NVISIA developed CarePages), which according to the writers is currently the largest online health firm, the initial stages of the company were a bit slow in part because of the conservative nature of the health care business model as well as the convoluted financial reimbursement models in this space. However, Case still thinks digital medicine will continue to grow, because as individuals continue to spend more on healthcare, “the consumer will demand to know and will want to be empowered”. While Case sees parallels between the current state of digital medicine in the late-1970s when personal computing was just starting out, the writers share the physician argument that medicine is more complex than the digital platforms of the internet. Due in part to some of the resultant resistance to digital medicine, it might make sense to refer to a needed reformation rather than a revolution.

Joanne Shaw argues in a recent issue of British Medical Journal that the “traditional paternalistic relationships between patients and doctors are being undermined in much the same way as the religious Reformation of the 16th century empowered the laity and threatened the 1,000-year-old hierarchy of the Catholic church in Europe. The Reformation had irreversible consequences for Western society; the implications of the healthcare reformation could also be profound”.

Topics: Healthcare Tech, Executive Insights

Written by Erik Gfesser

Erik is a Sr. Technical Architect at NVISIA LLC.

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