Exploring Health and Data at SXSW

My top three panel session picks for the 2017 SXSW Interactive Festival.

The tech industry knows user data is valuable, and goes to great lengths to create incentives for consumers to give them more of it. Health researchers also value data and have been working for years to increase sample sizes to produce results that are representative and statistically significant.

And just as data is valuable to the tech industry and to researchers, that data is valuable to those who generated it in the first place — the consumers and participants. Our ability to access and have insight into our own data — and to share it with our doctors — should allow us to have greater control over our well-being.

More data is better…but WHICH data do we really want? Who gets to decide? And is the same for everyone?

Consider this: I know someone who has had their entire family genetically sequenced. They use the information to plan for the future and to support each other. It’s now possible — and even relatively affordable — for many people to do this. I know that if I did it I could possibly learn the degree to which my strengths and weakness are genetically determined and whether I have a genetic marker for a disease that could prematurely disable or kill me.

But just because it’s possible (and affordable) for me to know, doesn’t mean I want to know.

Maybe I’m just one of those people who likes to be surprised. When I had the opportunity to know the sex of my children before they were born, I chose not to be told. Or maybe I fear that I will be told that I have a condition I can’t treat, or for which treatment is controversial that will diminish my happiness in the time before symptoms start to show. Maybe ignorance is bliss?

The tech industry and health researchers — driven by their mutual desire to keep consumers and study participants engaged — could collaborate (and have begun to) in order to understand what what kinds of data are most valuable to return to which kinds of consumers.

What kinds of data are most valuable to return to consumers — as diverse as they are?

And how can the tech industry and health researchers work together to ensure consumers understand how their data may be used? And to guarantee them that information they do not want returned to them is kept from others’ eyes as well? These are the questions we’ll explore in a panel session I’ve proposed to the SXSW Interactive Festival — Giving Back: How Returning Data Can Improve Health — with Stephen Friend of Sage Bionetworks, Nathan Price of the Institute for Systems Biology, and Ernesto Ramirez of Quantified Self.

I hope you’ll consider giving our panel your vote in the SXSW PanelPicker process and joining us in Austin if we’re selected.

I am excited to see other panels in the running that also explore the impact of data and technology on health. I’ve put in my vote for these three sessions:

  • Mood, Tech & You: ResearchKit Meets Mental Health: This panel, hosted by Luminary Labs, provides an opportunity to learn more about the Mood Challenge for ResearchKit (funded by the Robert Wood Johnson Foundation) and the early outcomes from its exploration of how mood impacts our daily lives, health, and well-being. My colleague Paul Tarini is one of the panelists, along with Sara Holoubek of Luminary Labs and Jeff Frazier of Thread Research.
  • Small Plates, Big Data: Food Tracking & Privacy: Organized by the Center for Democracy & Technology, this session will also explore harnessing the power of data without compromising privacy. I am looking forward to hearing what speakers Alethea Lange (Center for Democracy & Technology) Ellen Broad (Open Data Institute), Toke Vandervoort (Under Armour/MyFitnessPal), and Laura Adams (Public Health Epidemiologist) have to say.
  • The Effect of Mobile Technology on Health Outcomes: I am interested to hear this conversation between Divya Nag (Apple), Eric Dishman (NIH), Eric Topol (The Scripps Research Institute), and David Chase (HealthFundr) about whether or not digital technology can engage people to become active participants in a health care system that has fostered passivity, and if digital tools help actualize value-based care models by affecting health outcomes, patient/provider-satisfaction, and the costs of care.

These are just a few of the thousands of sessions up for a vote at SXSW. I hope you will consider supporting these along with me. I would also like to hear about other sessions for which you’re voting. What should be on my radar?

At the Robert Wood Johnson Foundation, we actively explore emerging trends to learn how they might be applied to improve health and health care, and build a Culture of Health. If you have a pioneering idea, we’d love to hear about it.

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