Yet there are major learning opportunities for healthcare providers that share the vast quantities of personal health information now residing on their servers or those of their information technology contractors. Researchers using pooled data from a broad cross-section of providers can identify unsafe technologies, best medical practices and hot spots of disease.
At the institutional level, things get more personal. Research using in-house databases can identify the most costly patients for targeted interventions. Systems also can use data to find physicians whose practice patterns vary widely from accepted standards of care.
The question facing providers, then, is how to reassure individuals that their privacy will be protected as organizations move toward greater data-sharing and turning their electronic health records into a learning system that can improve the quality and safety of healthcare services.
A report last week from the Institute of Medicine suggests there is a receptive audience among patients for those reassurances, at least among the three-quarters of the U.S. population that has access to the Internet. Two-thirds of Internet users participate in social media and 59% search the Internet for health-related information. According to two surveys included in the report, one by the not-for-profit Consumer Reports and the other by PLM, a for-profit social-networking site focused on healthcare, 94% of social media users would agree to share their de-identified personal health information if it was being used to help doctors improve care.
The surveys also revealed this altruism extended to the private-sector use of de-identified data. Not only would 92% share their data with individual scientists looking for cures for diseases, but 84% would agree to share that information with drug companies to help them discover new products.
This is a stark contrast from the controversy that rages in medical product-development circles over sharing all data from clinical trials, another activity whose existence relies on the altruistic support of individual patients. Most trials are financed by private firms that keep much of the underlying data hidden, even after publication of studies in the medical literature.
Another IOM committee is hoping to give researchers access to that data in ways that “respect the individual participants whose data are shared” yet avoids creating a “financial burden” on data sharers. The real fear, of course, is that no one would invest in clinical trials if all the proprietary data became accessible to outside researchers who are looking for clues for their own proprietary research or are seeking ways to undermine their competitors' conclusions.
That's hardly the concern of people sharing their health information on the Internet, which often comes through active participation in patient-oriented chat rooms and discussion boards. These patients are turning some of the most intimate details of their personal lives into an open book.
Much of this “data” isn't very useful for creating a healthcare system that can learn from its experiences. That requires a high level of uniformity and validated markers of quality, safety or patient satisfaction—something patient-reported information rarely provides.
However, patient-reported information over the Internet does have the potential to become an extremely valuable learning tool. One can imagine it being used to measure outcomes or identify safety issues with particular drugs and devices. Numerous Internet entrepreneurs already are moving to set up systems for measuring patient-reported outcomes and satisfaction with specific institutions or providers.
The key to making this new source of data useful is setting up a regulatory framework that both guarantees privacy and assures researchers, providers and patients that the collected data has integrity and purpose.
Follow Merrill Goozner on Twitter: @MHgoozner