Nature Comment: Stop the privatization of health data
SEATTLE WA (July 20, 2016)
Sage Bionetworks, a nonprofit biomedical research organization, continues its work to redefine the way in which health data is gathered, shared and used through the use of open systems, incentives and norms. In a Nature commentary published today, a set of governing principles for digital health data analysis that are designed to maximize the contribution of large-scale digital data to advancing medical care are described. This commentary was co-authored by John Wilbanks, Chief Commons Officer at Sage Bionetworks and Eric Topol, MD, Director of the Scripps Translational Science Institute, and Chief Academic Officer of Scripps Health. The two work together on the NIH-funded Precision Medicine Initiative that was announced earlier this month.
“Emerging technologies for sensor-based monitoring of health, including wearable trackers and smartphone apps, provide an unprecedented resource for the collection of longitudinal data from individuals,” said Lara Mangravite, PhD, President of Sage Bionetworks. “These data may enable the tailoring of disease modulators to maximize benefit on an individual basis.” The opportunities arising from the availability of large-scale digital health data have caught the attention of many technology companies including those with extensive expertise in big data management and analysis across other domains. However, these companies tend to operate in closed manners that provide little transparency into methods and little opportunity to test reliability of outcomes. “Closed systems disable the checks and balances necessary to ensure that observations are accurate and reliable,“ said Dr. Mangravite. “This is essential when building algorithms designed to influence decisions about health.”
Harnessing these data will require large-scale efforts for data management and interoperability – a problem that has been solved across many in other fields but remains an issue within the health space. “Many data providers offer a mechanism to return data to consumers, but not in a way that they can easily combine it with data collected across providers or shared with others,” said Mr. Wilbanks. “The digital health revolution only works if we place the patient in control of how and where their data is shared.” Sage Bionetworks has conducted a series of clinical research studies in which more than 75% of those enrolling choose to share their data broadly, in contrast to “closed loop” systems where the data disappear into a silo for private analysis. “Over the long term, open systems are necessary to maximize the benefit derived from health data,” said Dr. Mangravite. “They promote multiple avenues of scientific progress in parallel and force a degree of scientific evaluation that can not be otherwise performed.”
A case study in Open Systems: mPower
In March 2015, Sage Bionetworks launched mPower, a smartphone application-based study to pilot the feasibility of remotely collecting frequent measurements of symptom severity and treatment sensitivity in Parkinson’s disease. The mPower app collects data on capacities affected by Parkinson’s disease, including dexterity, balance and gait, memory, and certain vocal characteristics, through tasks that make use of iPhone sensors. mPower launched through Apple’s ResearchKit, which helps doctors and scientists quickly gather data for medical research on an ongoing basis using iPhone apps. Unlike traditional studies, mPower participants are able to choose who to share their data with. Sharing options include only those researchers associated with mPower, or qualified researchers worldwide. So far, over 75 percent of the more than 12,000 mPower participants chose to share their data broadly with researchers.
In February 2016, Sage Bionetworks released the first six months of data donated by those mPower participants that chose to share broadly. Researchers can become qualified and access the Parkinson’s database via Synapse, a data and analysis sharing platform. From a preliminary analysis of the data, Sage has found enormous variation of symptoms within individuals, which could help researchers better pinpoint windows of intervention. Sage has also noted distinct patterns between medication intake and symptoms, insights that could eventually inform care and treatment regimes. By opening up the data and making it available to all researchers, Sage hopes to accelerate new insights that can be implemented in the clinic and lead to improvements in the lives of people with Parkinson’s disease – insights that can only be realized with a large, open community of data scientists analyzing and re-analyzing the data.
About Sage Bionetworks
Sage Bionetworks is a nonprofit biomedical research organization, founded in 2009, with a vision to promote innovations in personalized medicine by enabling a community-based approach to scientific inquiries and discoveries. Sage Bionetworks strives to activate patients and to incentivize scientists, funders and researchers to work in fundamentally new ways in order to shape research, accelerate access to knowledge and transform human health. It is located on the campus of the Fred Hutchinson Cancer Research Center in Seattle, Washington and is supported through a portfolio of philanthropic donations, competitive research grants, and commercial partnerships. More information is available at http://www.sagebio2018.wpengine.com.
mPower (Mobile Parkinson’s Observatory for Worldwide, Evidence-based Research) is an iPhone app-based study notable as one of the first observational assessments of human health to rapidly achieve scale as a result of its design and execution purely through a smartphone interface. Learn more by visiting the mPower Website or download the mPower app on iTunes.
For more information on the Precision Medicine Initiative (PMI), see https://www.whitehouse.gov/precision-medicine.
Contact: Diane Gary