Dr. Bill Crounse of Microsoft

In a move to enhance the translation and spread of research, NCI recently invited three informatics experts from private industry to speak at a half-day conference titled “The Future: Consumer Health Information Technology.”

NCI’s Lindsey Volckmann, Dr. Robert Croyle and Dr. Bradford Hesse welcomed guests Adam Bosworth, formerly of Google; Dr. Bern Shen of Intel; and Dr. Bill Crounse of Microsoft. NCI’s Dr. Steve Taplin served as moderator.

National surveys and studies show that technology is changing the way people manage their health. “There’s a massive spread of people seeking health information online,” Hesse said. “The increase crosses every age category.” Consumers are also logging on to purchase medications; meanwhile, a growing number say they would prefer going online to schedule appointments, email their physicians and view and annotate their own medical records.

Within HHS there’s a push to create a health care system similar to a business system, with interoperable (useable on several software platforms) medical records.

IT, with its enormous power to connect, stands to play a key role in affecting behavior, improving access and enhancing motivation. Given the major role played by factors such as smoking, physical inactivity and nonadherence to screening, Hesse noted that “behavioral issues [in influencing outcomes] are huge.”

Participants in the recent IT conference included (from l) Dr. Steve Taplin, NCI; Dr. Bern Shen, Intel; Dr. Bill Crounse, Microsoft; Adam Bosworth, formerly of Google; and Dr. Bradford Hesse, Dr. Robert Croyle and Lindsey Volckmann, all of NCI. Photos: Michael Spencer

Yet the situation is complicated. For example, consumers may wish to email their physicians, but whether or not insurers will reimburse physicians for their “electronic hours” is problematic. In addition, without a physical assessment in a clinical setting, emailing medical advice may increase risk of liability.

And while private industry may bristle with creative thinkers, its mission is neither setting federal policy nor writing regulations to enforce it. How can the private side best work with government to deliver research-based solutions? The panelists offered perspectives to the audience in Masur Auditorium. Some highlights:

Bosworth, former head of Google Health, had three overarching suggestions: standardize medical vocabularies and records to make them interoperable; ensure that individuals have rights to electronic health data about themselves in pharmacies, labs and insurance companies; and design and test protocols so all this becomes feasible. With an eye towards the goal of universal coverage, he stressed that IT can lower costs so that health care may be extended to all.

Intel’s Shen, a former emergency room physician, gave an overview of the current situation and noted that one of the most striking changes is “the so-called shift left [on the health care spectrum] from acute care to home care, where patients can arguably enjoy a higher quality of life at a lower cost of care—if given the right tools and support...Health care insurance for a family of four in the U.S.,” he said, “now costs the same as the annual whole salary of a minimum wage worker.

“Power matters,” Shen said. “Technology can upset power structures and the normal ways of doing business.” He cited several concrete ways IT can help: information transfer; reducing social isolation in the ill, aged and infirm; improving medication adherence; and home monitoring.

Microsoft’s Crounse, formerly a family physician and hospital chief medical information officer, also reviewed health care challenges. “America has the worst information technology in health care among the industrialized nations. The U.S. government investments are very small; we are drastically behind, 15 years behind. Germany, the U.K., Australia and Canada provide better care for less money.” He introduced the audience to Microsoft’s “Health Vault,” a consumer health platform to search for health information and to access, store and share one’s own health information with doctors, family members and others.

Panelist Bosworth, formerly with Google, stressed that IT can lower costs so that health care may be extended to all.

A vigorous Q&A followed, with questions ranging from literacy levels and the role of government in the free market to why the U.S. lags behind in health care information delivery.

Sixty percent of the dollars in the [health care] system come from government, Crounse noted, but there are too many “crazy rules...Medicare should pay doctors to do emails and virtual visits.” Bosworth stressed that although “patients do have rights today to their medical records under HIPAA [Health Insurance Portability and Accountability Act], the right isn’t useful because it simply guarantees you a fax of paper records in the doctor’s office. What I’m arguing for is rights to an electronic transfer of the electronic data that exists about you.” Shen called for adding “health literacy and health policy literacy to education,” although, he noted, “I know it’s hard for you here to do that in your public role.”

Is IT here to influence health care policy or to serve it?

Moderator Taplin landed on a hopeful note: “Technology will do what we want,” he said. “The question is: What do we want to deliver? We need...an interactive process to optimize care for all Americans.”

To help plan next steps and deliverables, NCI has created a forum on the event web site: www.informaticsinaction.com. The conference is archived there and at http://videocast.nih.gov/.