Reactions

The following links contain reactions and thoughts from some of the attendees present at the symposium:

Quantified Self Public Health Symposium by Susannah Fox

Quantified Self Public Health Symposium by Doug Kanter

Quantified Self Public Health Symposium by Edison Thomaz

I Have The Problem in My Grasp by Roni Zeiger

Personally Generated Health Data - The Next Frontier by Bryan Sivak

Quantified Self Public Health Symposium tweet collection by Joyce Lee

Photos

You can view photos from the event here.

Symposium Videos

Opening Session: Welcome and Why We're Here

Theme: New self-tracking instruments and new self tracking practices are changing the terrain of public health research. The purpose of this meeting is to expose some key principles and challenges, and to begin the process of removing research barriers and improving access to the self-collected data.

Gary Wolf (QS Labs)

Gary Wolf introduces the Quantified Self Public Health Symposium.


Stephen J. Downs (Robert Wood Johnson Foundation)

Stephen Downs from the Robert Wood Johnson Foundation discuses their new focus on a “Culture of Health” and their reasons for supporting the symposium.


Susannah Fox (Pew Internet and Life Project)

Susannah Fox shares research from the Pew Internet and Life Project and describes the challenges ahead for promoting self-tracking.


Bryan Sivak

(US Department of Health and Human Services) Bryan Sivak, CTO of the HHS, gives his opening remarks and discusses the challenges to using self-tracking data for public health benefit.



Data Flows: Access, Integration, and Context

Theme: We take for granted that there is a lot of self-collected data “out there.” What are the facts on the ground? What type of data is being collected, and by what instruments? How can it be accessed? How are heterogeneous sources integrated for both personal meaning making and research discovery?

Anne Wright (BodyTrack/Fluxtream)

Anne Wright discusses data access and the hard problems worth solving in personal data systems.


Margaret McKenna (Runkeeper)

Margaret McKenna explores the issues, challenges, and ideas large scale self-tracking applications have in mind when they consider working with the research community.


Andy Hickl (ARO)

Andy Hickl describes the role of context in designing and using personal data systems.


Ida Sim (University of California, San Francisco/Open mHealth)

Ida Sim describes Open mHealth and their process of creating standardization for personal health data systems.



Deep Personal Data

Larry Smarr & Leroy Hood (UCSD, Institute for Systems Biology)

Larry Smarr and Leroy Hood talk about their experience with Quantified Self data and new personal data projects.


Participation One: Research Design and Participation

Theme: The quantitative increase in the amount of data available for public health research is linked to a qualitative transformation of the research process involving a larger role for research participants. What effect does this have on research design and methods?

Jason Bobe (Personal Genomes Project)

Jason Bobe talks about the lessons learned from involving research participants in the data ownership and discovery process.


Eric Hekler (Arizona State University)

Eric Hekler discusses new ideas and methods for involving participants in the research process.


Matthew Kay (University of Washington)

Matthew Kay talks about how researchers are exploring the the design of personal data tracking tools and systems.



Participation Two: Quality, Validity, and Technique

THEME: Are there ways to think about quality and validity of data useful to all stakeholders, including individuals, clinicians, and researchers? How does participant-driven research intersect with advanced techniques such as machine learning?

Ian Eslick (Vital Reactor)

Ian Eslick discusses the role of personal experimentation and personal data in the medical and scientific process.


Doug Kanter (Databetes)

Doug Kanter describes what he's learned from tracking and visualizing his diabetes data.


James Fogarty (University of Washington)

James Fogarty describes the role of machine learning for helping individuals understand and make sense of their personal data.



Leadership: Infrastructure, Funding, and Next Steps

Theme: What are the logical next steps? How can existing and future initiatives of funders and science leaders coordinate and support these next steps.

Rachel Fleurence (Patient Centered Outcomes Research Institute)

Rachel Fleurence talks about the role of PCORI and patient-centered research groups and projects.


Kevin Patrick (UCSD)

Kevin Patrick gives his closing remarks and takeaways from the Quantified Self Public Health Symposium.


Bryan Sivak (US Department of Health and Human Services)

Bryan Sivak gives his closing remarks at the 2014 Quantified Self Public Health Symposium.



Additional References

Health Data Exploration Project

Personal Data for the Public Good Report
Executive Summary
HDE Report
Annotated Bibliography
Appendices

Tracking for Health (Pew)

Complete Report
Topline Questionnaire Corresponding Data

Example Data Sharing Agreement

University of Wisconsin & Propeller Health [pdf]

Research Articles

We’ve compiled a list of research papers that deal specifically with mobile health, personal data, and the quantified self. This list reflects contributions from the HCI, behavioral health, and social science communities and includes work by many of the researchers present at the symposium.

Quantified Self Public Health Symposium Research List

Supporters

Robert Wood Johnson Foundation

Calit2 at UCSD and UC Irvine

U.S. Department of Health & Human Services, Office of the CTO