Evolving Patient Rights In The Research And Delivery Of Health Care

Just a few years ago, even though “patient engagement” was the watchword of health care reform and patient access to records (as promoted by organizations like OpenNotes) was considered a nice thing for providers to do, I sensed that people talking about real patient empowerment were out on the fringe of health care and research. As the idea reached the proscenium this month at the Health Datapalooza, a conference founded by the US Department of Health and Human Services and now attracting more than 2,000 people, patient empowerment marks its entry into the mainstream.

Greg Biggers, whom I interviewed 3 years ago, was one of the early pioneers of citizen science in clinical research. Regina Holliday and E-patient Dave DeBronkart expressed concerns for more patient involvement in care and cost containment. All were respected, but I think they were rarely heeded.

Real patient empowerment doesn’t mean downloading one’s lab results from a web portal put up by one’s doctor or getting a second opinion. Rather, it means collecting observations of daily living, getting them into the doctor’s record, and discussing them with the doctor in conjunction with conventional diagnostic tools. More broadly, it’s choosing one’s lifestyle with thoughtful, understanding input from professional clinical staff...