Over the last few months, the FasterCures Health Data Basics team, along with our Advisory Panel and Involution Studios, developed a survey and interview guide to gather information for the educational tool we are working to develop. This foundation of information is helping us better understand individuals' experiences with health data, identify knowledge gaps, and explore educational needs.
What did we ask?
The following patient & caregiver survey received over 700 responses and its results are instrumental to our understanding of individuals thoughts, beliefs, and experiences with health data:
We also completed 15 one-on-one interviews with key opinion leaders in the health data space. They ranged from data scientists to funders to patient advocates and many other roles. Here is the guide we used to structure the conversation:
We spoke to:
- Rebekah Angove, Stakeholder Engagement, REACHnet
- Jason Bobe, Associate Professor, Icahn Institute at Mount Sinai; Personal Genomes; DIYbio
- Patricia Brennan, Director, National Library of Medicine
- Malay Gandhi, Executive in Residence, Greylock Partners
- Marnie Gelbart, Director of Programs, Personal Genetics Education Project
- Christopher Khoury, Vice President, Environmental Intelligence & Strategic Analysis, American Medical Association
- Karen Kmetik, Group Vice President, Health Outcomes, American Medical Association
- Leslie Krumholtz, CEO, Hugo
- Sally Okun, Vice President, Advocacy, Policy, & Patient Safety, PatientsLikeME
- Jodyn Platt, Assistant Professor, University of Michigan Medical School
- Jane Sarasohn Kahn, Health Economist/Advisor, THINK-Health LLC
- Sue Sheridan, Patient and Family Engagement Officer, Centers for Medicare and Medicaid Services
- Jane Thorpe, Professor of Health Policy & Management, The Milken Institute School of Public Health, George Washington University
- Chris Waters, President/CEO, Rare Science
- John Wilbanks, Chief Commons Officer, Sage Bionetworks; FasterCures Fellow
What did we learn?
The survey and interview results have revealed a wealth of perspectives and experiences all related to the concept of health data. They also identified more gaps and needs than a single educational tool will be able to address. In sharing back the results with individuals who participated and more widely with this community, we hope that these results can be interesting and useful in many contexts.
Click below to learn more about the "key takeaways" from the interviews and a slice of the survey response data. We will also be making the raw survey data public soon in hopes that others will examine it from fresh perspectives or link it with other data sets.
If you have questions on the results, please comment below and we will do our best to respond in a timely fashion.