Who’s using health data from your fitbit and smartphone?

The importance of ethical standards for consumer-generated data use in healthcare was a hot topic at AcademyHealth’s recent 2018 Health Datapalooza conference.   In this blog post in partnership with AcademyHealth, MITRE’s Jessica Skopac and Susan Mbawuike address four questions we should all want to know the answers to regarding our health data. The questions, described further in the blog post, include:

1. How many of us have read and know – really know – what we are agreeing to when we sign user agreements to set up accounts with Google, FitBit, Apple, etc.?
2. Who is making health-related decisions using my Internet search history and subscription information?
3. Did I grant them permission to use my data?
4. What standards are organizations following to determine if they should use my data?

These questions were top of mind at this year’s Health Datapalooza, as virtually every speaker expressed excitement about new technologies to leverage health data. In each session, presenters and attendees alike discussed what new data was available and how various individuals could use data, but they did not always discuss how these data should be used. To respond to these types of challenges, experts from MITRE, in partnership with subject matter experts from the University of Maryland, are developing an ethical and policy framework to guide consumer-generated data (CGD) use in healthcare. Related resources:

• Improving patient outcomes through standard health records
• Empowering patients in their own healthcare
• Paving the pathway to patient data ownership and better health
• Improving care through effective payment models
• Making sense of data for healthcare providers