Fueled by a potential national cohort of more than a million Americans volunteering their health data, the Obama administration’s Precision Medicine Initiative is pioneering a new model of research with patients not passive bystanders but at the center of the effort.
So argues Claudia Williams, senior health and health IT advisor in the Office of the U.S. Chief Technology Officer.
According to Williams, the Precision Medicine Initiative will include a much broader spectrum of health data than what is traditionally found in research studies, including self-reported data and a “much deeper examination of mHealth data and how to integrate it with other datasets for a much fuller picture of every participant.”
She also cites the widespread adoption of electronic health records by providers as a major force driving the availability of digital data across the healthcare ecosystem.
“More than just engaging a million individuals to contribute their data and be partners in this effort, the goal is to create a new, much more open data platform that will be broadly available to a very wide range of researchers including—we hope—patients who might be interested in finding other patients like themselves,” she told an audience on Monday at the inaugural HIMSS Connected Health Conference in Washington, D.C.
The White House on November 9 released privacy and trust principles for the Precision Medicine Initiative, developed by experts from within and outside of government, to serve as a foundation for protecting participant privacy and building trust in activities within PMI. In particular, one of the principles outlined in the document is to empower participants through access to information, which Williams sees as an important incentive for their participation in the initiative.
“PMI should enable participants’ access to the medical information they contribute to PMI in consumer-friendly and innovative ways,” states the document. “This could include sharing aggregate research data, research findings, information about ongoing research studies, as well as data collected about participants.”
Williams says participants will be able to receive copies of their own information. “This seems pretty obvious: if you’re involved in a study, shouldn’t you be able to get your data back?” she asks. “For those of you who have been involved in research, Research Information Boards have often seen this as an ethically gray area in which getting information back is not considered a benefit so much as a risk. But, as we’ve seen from the very broad data access rights within HIPAA, generally speaking people are pretty wise with their data—besides that, it’s their right to have it.”
Patient rights under HIPAA to access their own health data and to make it available to whom they want is vital to the Precision Medicine Initiative, according to Williams. “We think of HIPAA often as a block to information sharing,” she said. “But, one of the most important things to remember is that patients can do whatever the heck they want with their own data. Those are all rights very clearly spelled out within HIPAA.”
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