Who Uses Your Health Data?

Sometimes it is hard to comprehend the ways health data might be used. Health data from a community it vital for the benefit of creating better care for patients, but it can also be used in ways that might enable discrimination or harm. 

Check out this resource from design firm GoInvo which visually describes how your health data are used by different entities. When we as patients lack access to our own complete medical records, one thing to consider is how many others had such easy access to our data.

How might patient communities organize to ensure the rights, interests, and voices of our communities are a key driver in design and governance of data? If HIPAA does not cover or protect all uses of data from a group of people with the same health condition, how do we (patients) advocate for rights and lasting change?

Perhaps an important step for any patient community on a quest for rights and collective governance is to know where our data goes, and learn how it is used for collective benefit or harm. Check out more of the open design work from GoInvo for inspiration, and kudos to Juhan Sonin and Sharon Lee for creating this great resource!