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At Medicine X, talking about owning one’s data and about patient-tailored health care

Matthew Might on stage - 560Health care that's tailored to you and taking ownership of your health data were the themes of the morning yesterday at Medicine XLloyd B. Minor, MD, dean of the medical school, got the conversation rolling by defining precision health, and in a session that followed, several speakers shared stories that illustrated various aspects of this area.

In a presentation cleverly called "Can medical 'selfies' save us?" Steven Keating, a graduate student at MIT, began by explaining to attendees why it's important to monitor your own health. Several years ago doctors detected a slight abnormality in Keating's brain; they told him to "monitor it" and he took this advice to heart. He requested copies of his medical records, learned about the brain and paid close attention to how he was feeling, he explained. "Then I started smelling whiffs of vinegar," he said.

Keating urged doctors to conduct an MRI and discovered he had a brain tumor (about the size of a lemon) that would need to be surgically removed. Keating told the audience that his interest and engagement in his own health care wound up saving his life.

Next, Claudia Williams, senior advisor for health innovation and technology at the White House Office of Science and Technology Policy, took the stage to discuss the Precision Medicine Initiative that was launched this January by President Obama's Administration. The initiative, she said, is "about moving away from the one-size fits all approach and moving toward one that tailors [care] to your specifics." To do this, the National Institutes of Health is now inviting people to join a cohort of one million individuals (or more) that will contribute biological samples and data to advance researchers' understanding of heath and disease.

Many people have said they would participate in this initiative if they could get their own medical records back, Williams said. "Building trust and accountability" is a key part of this initiative, she said, noting that "If you want encrypted email data, you have the right to it."

Having access to data from this initiative, especially genomic data, could help patients learn which drugs will be most effective for them and help people with rare diseases learn more about their illness, Williams told me during a post-panel interview.

The next speaker, Matthew Might, PhD, an advisor for the Undiagnosed Disease Network Coordinating Center at Harvard, provided a concrete example of how access to data can aid people with rare illnesses. Might told the audience that his interest in this area began when his son Bertrand was born with a mutation in the NGLY1 gene (N-Glycanase deficiency). Doctors told Might that his son's condition was extremely rare: "It was the first case of this disease they'd seen."

To learn more about his son's rare disease, Might wrote a story called "Hunting down my son's killer" and posted it online to find other patients like his son. It worked. Through the online network of patients, Might learned that there are 39 known cases of N-Glycanase deficiency worldwide. By connecting with these people he was able to learn more about his son's disease.

After Might spoke, Andrea Downing, the session's moderator, summed up the three talks by saying "patient engagement is great, but autonomy is better." And panelist Euan Ashley, MD, a Stanford cardiologist, agreed. After talking about MyHeart Counts, an app that allows users to learn about their own heart health while also participating in a large-scale heart study, he commented, "The data needs to be in the hands of the people who own it."

More news about the conference is available in the Medicine X category. Those unable to attend the event in person can watch via webcast; registration for the Global Access Program webcast is free. We’ll also be live tweeting the keynotes and other proceedings from the conference; you can follow our tweets on the @StanfordMed feed.

Photo of Matthew Might courtesy of Stanford Medicine X

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