Time to Reinvent Access to Health Care Data

February 9, 2018, Wall Street Journal carried an opinion piece Time to Reinvent the Web (and Save Wall Street) written by L. Gordon Crovitz, a former publisher of the Journal and a well-known advocate of digital technology. Mr. Crovitz discusses the importance of continuing digital innovation, despite a recessionary economy. To support his point he references observations made at the TED (Technology, Entertainment and Design) conference where Sir Timothy John Berners-Lee, credited as inventor of the world wide web, spoke to the assembly: Mr. Berners-Lee now advocates what he calls “linked data,” to go beyond today’s hypertext and make readily accessible digital information stored in any format from any source. There’s a huge amount of data now in various digital formats, but it’s hard to find new relationships or correlations. He envisions a “semantic web” in which data is “reorganized so that well-tagged tables of structured information can easily be linked to others.”

Mr. Crovitz applauds the visionary Mr. Berners-Lee whose early thinking about hypertext and the web were nearly impossible to conceive in a non-internet environment. He suggests that if Wall Street is to survive, it will also need to look beyond short-term profits and focus on long-term intellectual and technologic investments that may be similarly visionary and speculative – reflecting a higher level of creativity and innovation. He bemoans Wall Street’s pressure on companies to “..compete to get new products out the door quickly, with their firms showing little patience for multiyear research and development.”

This stimulating column raises several intriguing questions for healthcare leaders. So where to begin? At the most tangible level, it makes me wonder about the relatively near term and institutionally limited benefits healthcare organizations seek to obtain from electronic health records and about the HIPAA spawned constraints that exist on information sharing. Could basic and clinical research – and thus patient care – be significantly accelerated and democratized by a radical restructuring of scientific and blinded personal healthcare data that makes vast data sets available to investigators? Instead of relying on limited enrollment trials or relatively small local or regional data sources which produce slow and perhaps misleading results, could national or international pools of data make it possible to answer epidemiologic, health services, therapeutic, and/or genetic questions rapidly and with greater reliability? Instead of prioritizing therapeutic and pharmacologic approaches that are rushed to market for their short-term profitability, should we encourage the long-term and perhaps less easily conceptualized path? Is there sufficient grant focus “way out there” technology research for health care? Could a “semantic information web” support enhanced consumer-driven decision making.