“Enabling Personal Data Donation for Public Good Research”
May 17, 2016




Tuesday, May 17, 2016: HDE Network Meeting

Presentations we given on current Network projects and issues, and discussions were held in which members shared interests and networked with innovators in the area of personal health data.

Wednesday, May 18, 2016: Quantified Self Public Health Symposium

The QSPH Symposium advances discovery in public health through collaborative work with users and makers of selftracking tools. The meeting presented the progress of work since the previous meeting, and was an opportunity to connect with researchers, toolmakers, and science leaders. QSPH16’s goal was to to articulate the aims, methods, and research agenda of our emerging field. We specifically challenged ourselves to address equity and diversity in the creation, funding, design, and management of public health projects that make use of the deep personal data coming from sensors and mobile apps.


Thursday, May 19, 2016: HDE & Open Humans Data Dive

Get hands-on with personal health data! Network members joined us for a day of exploration and discovery with a variety of data sources in this workshop/hackathon format. Data specialists were on hand to walk us through data sets and demonstrate tools for analysis and visualization. Participants connected their own personal data for individual exploration as well. This event was co-organized by HDE and the Open Humans Project (https://www.openhumans.org/).

HDE Network Meeting Agenda

7:45 Breakfast


8:15 Welcome –

“Where We’ve Been, Where We Are, and Where We Need to Go”

Kevin Patrick

Principal Investigator, Health Data Exploration Project
Professor, Department of Family Medicine and Public Health, UCSD
Director, Center for Wireless and Population Health Systems, Calit2

Ramesh Rao

Director, UCSD Division of Calit2
Professor, Electrical and Computer Engineering, Jacobs School of Engineering, University of California, San Diego

8:30 Lightning Introductions & Aspirations for the Meeting (45 seconds each)

10:00 Agile Project Contributions –

“Projects that Have Advanced the Use of Personal Health Data for Research”

Emil Chiauzzi

Rumi Chunara

Eric Hekler

Julie Kientz

Michelle De Mooy

10:45 Announcement of Poster Honorees


10:50 Break & Personal Health Data Fellows Invited Poster Session

11:15 Invited Presentations –

“Enabling Personal Health Data Donation: Models that Work”

Madeleine Ball, Open Humans

Andrea Wiggins, Citizen Science

David Haddad, Open mHealth

Linda Avey, Curious

Bob Filbin, Crisis Text Line

12:15 Commissioned Paper Presentation – “Consumer-Driven Health Data Commons and the Transformation of Citizen Science”

Barbara J. Evans

Barbara Evans is a law professor, co-director of the Health Law & Policy Institute, and director of the Center on Biotechnology & Law at the University of Houston Law Center. Her research focuses on governance, privacy, and financing issues with large health information networks and tissue repositories; legal barriers to clinical implementation of pharmacogenomics; and standards of regulatory evidence, including the use of various methodological approaches to support drug and device regulatory decisions.

12:30 Lunch & Poster Session Continued


1:30 Invited Panel – “Personal Data Donation: Barriers and Paths to Success”

Ann Waldo,
Waldo Law Offices

Nick Anderson,
UC Davis

Camille Nebeker,
UC San Diego

Carl Stepnowsky,
UC San Diego

Jerry Sheehan,
Montana State University

Aaron Coleman,

Jason Bobe,
Open Humans

2:30 Brainstorm Session –  “Crafting Our Message to Promote Personal Health Data Donation”

  • Session Moderator: Cinnamon Bloss
  • Introduction to the Session (5 min)
  • Breakout into Small Groups, work on Provocative Questions (45 min)
  • Report Back to Large Group (40 min)


4:00 Wrap up & Summary


4:15 Break
4:30 Keynote


5:30 closing

Keynote: Citizen Engagement: Informatics in the Service of Health

Patricia Flatley Brennan, RN, PhD

Lillian L. Moehlman Bascom Professor,
School of Nursing and College of Engineering,
University of Wisconsin-Madison

May 17th, 4:30 pm, Atkinson Hall, 1st Floor Auditorium
UCSD Jacobs School of Engineering

The every-day experience of citizens informs and is informed by aspects of health — self-tracking of exercise, exposure to environmental hazards, satisfaction.  Lessons from  citizen science give guidance that could accelerate the use of data collected in the moment in the service  of health and life.


HDE Data Dive Agenda

Thursday May 19th, 2016

Atkinson Hall VROOM


8:30am – Breakfast, Atkinson Hall Lobby

9:00am – Data Dive Begins

12:00pm – Lunch (provided)

4:00pm – Adjourn


The Data Dive will have a flexible, participant-driven agenda. The morning will focus on “Island Hopping,” visits to different data and tool islands to experience the diversity of personal health data. The rest of the day will be spent in “deep dives” for focused explorations and collaborative data play. We will close with “travelogues” from the dive teams who want to share the highlights of their journey.

Participants are encouraged to bring laptops to take part in hands-on exercises and explorations. Wetsuits not required.