In the midst of several colliding perspectives on personal data sharing from both patients and researchers, it is challenging to comprehend how clinical study designs should be conducted to benefit both stakeholders. Sage Bionetworks recently began sharing data from over 9,000 participants of mPower, a mobile health research study for Parkinson’s Disease. As one of the first observational assessments of human health to achieve this scale, its success is attributed to the unique study design which emphasizes transparency and trust between participants and researchers.
John Wilbanks, Chief Commons Officer, Sage Bionetworks, will be sharing this case study at Arrowhead’s 8th Annual Personalized & Precision Medicine Conference on October 12-13, 2016 in San Francisco. For more information about the conference, CLICK HERE.
By developing an electronic consent process which enables participants to determine their individual data-sharing preferences, Sage Bionetworks addressed any misconceptions that patients’ information will be shared broadly and without their consent. They also allowed patients to change their data-sharing setting at any time during the study. That being said, more than 75% of the participants who qualified and consented decided to share their data broadly. After ensuring transparency, the research team was then able to collect self-reported outcomes and qualitative sensor data, which were shared for secondary analysis.
In return, Sage Bionetworks excluded commercial resale, marketing uses and re-identification of data donors. Therefore, by prioritizing transparency and emphasizing return of information, mPower was able to redefine how patient data sharing studies are conducted. For more information, visit: http://go.nature.com/1S3cMeY.