Harness Patient Innovation to Make Big Data Useful

Marcia Frellick

May 26, 2016

The research community needs patient engagement, not because emerging regulations require it, but because "patients are showing us the way forward," said Claudia Williams, senior adviser for Health Innovation and Technology at the White House Office of Science and Technology Policy.

Williams, who helps lead President Obama's Precision Medicine Initiative, gave a few examples as she delivered the morning keynote at the Big Data in Biomedicine 2016 Conference in Stanford, California.

One was that of Erin Moore from Cincinnati, whose son, Drew, was born with cystic fibrosis in 2010 and whose advocacy built a network through which families are helping to shape research and care.

Moore told Medscape Medical News that soon after her son was born, she became involved in fundraising with the Cystic Fibrosis Foundation, and eventually was asked to be the state advocacy chair in Ohio.

When she began meeting with policymakers on Capitol Hill, "I realized the barriers in the system from a different vantage point. I needed the system to work better for my kid. Cystic fibrosis is a progressive and fatal disease, and I didn't have time for politicians on Capitol Hill to argue about what they wanted to do," Moore explained.

She was instrumental in getting cystic fibrosis included in the Collaborative Chronic Care Network (C3N) at the Cincinnati Children's Hospital, and in creating a partnership between C3N and the Cystic Fibrosis Foundation. That gave cystic fibrosis a care network center in Cincinnati, but the innovation from that center will be shared, so the community nationwide will benefit.

C3N brings together researchers, families, and clinicians to establish what an ideal care plan for cystic fibrosis looks like, what outcomes are most important, and how to measure whether change equals improvement.

"The measures aren't all for patients and families. One of our priorities is a joyful workforce," said Moore. "It's important to the community that our healthcare providers find joy in what they're doing and aren't overburdened by a system that doesn't work."

Father Uses Internet to Find Patients With Rare Disease

Williams also referenced Matt Might, assistant professor at the University of Utah School of Computing, who's son, Bertrand, has NGLY1 deficiency, a very rare genetic disorder.

Williams said clinicians told Might and his wife, Cristina Casanova, that they didn't know of any other people who had the disorder, so the couple had no one to discuss management, treatment, or hope with.

That's when Might wrote a blog post designed to go viral. In his Hunting Down My Son's Killer post, he notes that his son is very much alive, but that his disease is life-threatening. The post described the family's journey to a diagnosis, and was packed with keywords that might capture the interest of other families looking for information on symptoms.

"Over a short time, he found 40 patients and their families," Williams said. They started coming together, sharing notes, and approaching researchers. "Now, two pharma companies are investing in therapies for the future."

Williams also pointed to the mPower app, designed for patients with Parkinson's disease. The app uses questionnaires, sensor data from the patient's phone, and optional wearable device data to continuously track the condition so patients can review and share trends. People with Parkinson's disease are urged to join the study, as are people without the disease, who will serve as the control group.

Over a period of several months, 15,000 people enrolled. Almost 80% said they would like to share their data broadly, and 93% reported that they had never before participated in a research study.

All these examples highlight the importance of a shift from thinking of patient involvement as a courtesy to thinking of it as a vital source of information and innovation.

"If we cannot find a way to engage this excitement and this iteration and this delight," she said, "we will not make the progress toward big data that we want."

MyHeart Counts

Another example of patient enthusiasm for research is the MyHeart Counts app, said Lloyd Minor, MD, dean of the Stanford University School of Medicine. Patients can participate in a global cardiovascular research study being conducted by Stanford researchers just by signing up with their smartphone, as previously reported by Medscape Medical News. Today, more than 60,000 people have joined the study.

And, if you're one of the more than 1.2 million people who have had genomic testing through 23andMe, you can elect to have your genomic data linked with your MyHeart Counts data, "so you get unprecedented information about your risk factors based upon your genetics for cardiovascular disease, and you can learn how your behavioral patterns, such as exercise, may impact those factors," Dr Minor explained.

"Never has there been such an opportunity to bring together so much data and to apply them in a predictive and proactive fashion to really understand the determinants of health and the determinants of disease," he said.

Ms Williams and Dr Minor have disclosed no relevant financial relationships. Ms Moore is a paid member of C3N.

Big Data in Biomedicine 2016 Conference. Presented May 25, 2016.

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