That observation leads to a third mandate: Listen well. Patients want to share their information. When patients were asked in a recent survey whether their health data should be used to help improve the care of future patients who have the same condition, 89 percent agreed (Alston et al., 2012). Yet, when they were asked whether they thought their data were being shared, the majority said they either did not know or did not think so. “We have a huge gap between what patients are telling us they want and what they perceive us to be doing.”
The data patients provide involve intimate parts of their daily lives. These patients are not simply human subjects, said Okun; they are actually members of the research team. “I would change our paradigm completely and start thinking of patients as patient researchers or citizen researchers.” Okun quoted a recent blog post to the effect that patient engagement is the blockbuster drug of the century. If this is true, she added, and if this “drug” is not currently being used, the research community is essentially engaged in malpractice.
“The system is never going to be perfect,” she said. But the biomedical research system has evolved to the point that all stakeholders can be involved in decisions. “Without patients, we would have no research. Let’s start thinking about how we can best honor them, respect them, and allow them to develop the trust that they need to participate with us.”
An alternative to widespread data sharing was described by Richard Platt, professor and chair in the Department of Population Medicine, Harvard Medical School, and executive director of Harvard Pilgrim Health Care Institute. Platt proposed that sharing information derived from the data while minimizing the sharing of data themselves nullifies some of the barriers discussed previously (Chapter 3). He went on to describe the Query Health Initiative, a system for sharing clinical information that has been promulgated by the Office of the National Coordinator for Health Information Technology. It uses the approach of sending the question to the data rather than bringing the data to the question. The question, in this case, is an executable program sent from the originator to the holder of data. The program then operates on a remote dataset and returns the answer to the sender.