Someday, you will have a question about yourself that impels you to take a look at some of your own data. It may be data about your activity, your spending at the grocery store, what medicines you’ve taken, where you’ve driven your car. And when you go to access your data, to analyze it or share it with somebody who can help you think about it, you’ll discover…
Now is the time to work hard to insure that the data we collect about ourselves using any kind of commercial, noncommercial, medical, or social service ought to be accessible to ourselves, as well as to our families, caregivers, and collaborators, in common formats using convenient protocols. In service to this aim, we’ve decided to work on a campaign for access, dedicated to helping people who are seeking access to their data by telling their stories and organizing in their support. Although QS Labs is a very small organization, we hope that our contribution, combined with the work of many others, will eventually make data access an acknowledged right.
The inspiration for this work comes from the pioneering self-trackers and access advocates who joined us last April in San Diego for a “QS Public Health Symposium.” Thanks to funding support from the Robert Wood Johnson Foundation, and program support from the US Department of Health And Human Services, Office of the CTO, and The Qualcomm Institute at Calit2, we convened 100 researchers, QS toolmakers, policy makers, and science leaders to discuss how to improve access to self-collected data for personal and public benefit. During our year-long investigation leading up to the meeting, we learned to see the connection between data access and public health research in a new light.
If yesterday’s research subjects were production factors in a scientist’s workshop; and if today’s participants are – ideally – fully informed volunteers with interests worthy of protection; then, the spread of self-tracking tools and practices opens the possibility of a new type of relationship in which research participants contribute valuable craft knowledge, vital personal questions, and intellectual leadership along with their data.
We have shared our lessons from this symposium in a full, in-depth report from the symposium, including links to videos of all the talks, and a list of attendees. We hope you find it useful. In particular, we hope you will share your own access story. Have you tried to use your personal data for personal reasons and faced access barriers? We want to hear about it.
You can tweet using the hashtag #qsaccess, send an email to firstname.lastname@example.org, or post to your own blog and send us a link. We want to hear from you.
The key finding in our report is that the solution to access to self-collected data for personal and public benefit hinges on individual access to our own data. The ability to download, copy, transfer, and store our own data allows us to initiate collaboration with peers, caregivers, and researchers on a voluntary and equitable basis. We recognize that access means more than merely “having a copy” of our data. Skills, resources, and access to knowledge are also important. But without individual access, we can’t even begin. Let’s get started now.
An extract from the QSPH symposium report:
[A]ccess means more than simply being able to acquire a copy of relevant data sets. The purpose of access to data is to learn. When researchers and self-trackers think about self-collected data, they interpret access to mean “Can the data be used in my own context?” Self-collected data will change public health research because it ties science to the personal context in which the data originates. Public health research will change self-tracking practices by connecting personal questions to civic concerns and by offering novel techniques of analysis and understanding. Researchers using self-collected data, and self-trackers collaborating with researchers, are engaged in a new kind of skillful practice that blurs the line between scientists and participants… and improving access to self-collected data for personal and public benefit means broadly advancing this practice.