The Personal Health Data Revolution, Connected Health, and Cancer

Meeting Information: March 26, 2015 | 8:00 a.m. - 4:00 p.m. | San Francisco, CA 94111

In this workshop, second in a series on connected health and cancer, the President’s Cancer Panel and leaders in various sectors will examine the role of personal health data as a driver of change in how individuals manage health and institutions conduct research. As more data are generated by health-tracking apps and devices, individuals and researchers are ready to use these data to the fullest potential. In many cases, user-generated data are being merged with other information sources to understand patterns in risk factors and population health. This exciting new era brings many opportunities for population health, health care, and research, but also challenges. Questions for exploration at this workshop include the following:

How do we generate knowledge from personal health data and then translate knowledge into health behavior change and improved health outcomes?
How can and do individuals use their own data for self-change? How do we leverage the collective input of Patient-Powered Networks for population change?
What is needed to optimize the flow of data? What standards are needed?
Who owns data generated by these applications?
What changes in informed consent are needed to reflect changes in the ways people contribute data for research, in online recruitment strategies for clinical trials, and in online communication among clinical trial participants?
What safeguards are needed to ensure both privacy and security?
What is required to move from a small number of elite institutions using multiple levels of data to inform prevention and care to a larger number of institutions implementing data-informed prevention and care?
How can challenges with current electronic health records be addressed to maximize benefits for patients? How should standards be developed and implemented?

This workshop is co-chaired by two national leaders in connected health. David K. Ahern, PhD, is Director, Program in Behavioral Informatics and eHealth, Brigham and Women's Hospital and Special Advisor, Division of Cancer Control and Population Sciences, National Cancer Institute. Bradford W. Hesse, PhD, is Chief, Health Communication and Informatics Research Branch, Division of Cancer Control and Population Sciences, National Cancer Institute.

Presentations and moderated discussions among participants will inform the Panel’s recommendations in a formal report to the President of the United States after the conclusion of series workshops.

Join us by live-tweeting during the workshop using #cHealth4Cancer (connected health for cancer).

Agenda

Time	Agenda Item
7:30 a.m.	Registration
8:00 a.m.	Welcome and Introductions
8:40 a.m	The Personal Health Data Landscape Opening presentations (20 minutes) Kevin Patrick, MD, Professor, Family and Preventive Medicine, University of California, San Diego, and Director, Center for Wireless and Population Health Systems, The Qualcomm Institute/Calit2 Christopher Boone, PhD, Executive Director, Health Data Consortium Moderated discussion (50 minutes)
9:50 a.m.	Break
10:05 a.m.	Personal Health Data for Individuals and Patients: Desired Future State for Individual Health Management Opening presentation (10 minutes) John T. Wald, MD, Medical Director, Public Affairs and Marketing, Mayo Clinic Moderated discussion (55 minutes)
11:10 a.m.	Personal Health Data for Cancer Detection and Care: Desired Future State for Health Care Opening presentation (20 minutes) Stephen H. Friend, MD, PhD, President, Sage Bionetworks Blackford Middleton, MD, MBA, MS Professor of Biomedical Informatics and of Medicine, Vanderbilt University School of Medicine Moderated discussion (45 minutes)
12:15 p.m.	Public Comment
12:20 p.m.	Lunch
1:20 p.m.	Personal Health Data for Cancer Population Health: Desired Future State for Public Health Opening presentation (10 minutes) Nirav R. Shah, MD, MPH, Senior Vice President and Chief Operating Office, Quality and Operations, Kaiser Permanente Southern California Moderated discussion (50 minutes)
2:20 p.m.	Break
2:35 p.m.	Personal Health Data for Cancer Research: Desired Future State for Research Opening comments (20 minutes) Richard L. Schilsky, MD, FASCO, Chief Medical Officer, American Society of Clinical Oncology Urmimala Sarkar, MD, Associate Professor, Medicine in Residence, University of California, San Francisco Moderated discussion (45 minutes)
3:40 p.m.	Public Comment
3:45 p.m.	Wrap Up and Next Steps
3:50 p.m.	Adjourn

Participants

Name	Title & Affiliations
Dr. David K. Ahern	Special Advisor Health Communication and Informatics Research Branch Division of Cancer Control and Population Sciences National Cancer Institute Rockville, MD @dahern1
Dr. Christopher Boone	Executive Director Health Data Consortium Washington, DC @cpboone
Ms. Janet Freeman-Daily	Lung Cancer Patient Patient Advisory Board Addario Lung Cancer Foundation Federal Way, WA @JFreemanDaily
Dr. Stephen H. Friend	President Sage Bionetworks Seattle, WA @stephen_friend
Mr. Gilles J. Frydman	Chairman Smart Patients Mountain View, CA @gfry
Ms. Sarah Greene	Associate Director CER Methods & Infrastructure Patient-Centered Outcomes Research Institute Washington, DC @researchmatters
Dr. Bradford W. Hesse	Chief Health Communication and Informatics Research Branch Division of Cancer Control and Population Sciences National Cancer Institute Rockville, MD
Mr. Matthew Holt	Co-Chairman Health 2.0 San Francisco, CA @boltyboy
Dr. Warren A. Kibbe	Director Center for Biomedical Informatics and Information Technology National Cancer Institute Rockville, MD @wakibbe
Dr. George Komatsoulis	Senior Bioinformatics Specialist National Center for Biotechnology Information National Library of Medicine National Institutes of Health Bethesda, MD @gak1965
Ms. Heather Cooper Ortner	Chief Executive Officer Dr. Susan Love Research Foundation Santa Monica, CA @HeatherOrtner
Dr. Blackford Middleton	Professor of Biomedical Informatics and of Medicine Vanderbilt University School of Medicine Nashville, TN @bfm
Ms. Judy Murphy	Chief Nursing Officer and Director Global Business Services IBM Healthcare Washington, DC @JudyMurphyHIT
Dr. Wendy Nilsen	Health Scientist Administrator Office of Behavioral and Social Sciences Research National Institutes of Health Program Director Smart and Connected Health National Science Foundation Bethesda, MD @WendyNilsen
Dr. Kevin Patrick	Professor Family and Preventive Medicine University of California, San Diego Director Center for Wireless and Population Health Systems The Qualcomm Institute/Calit2 La Jolla, CA
Dr. Barbara K. Rimer	Chair President’s Cancer Panel Dean and Alumni Distinguished Professor University of North Carolina Gillings School of Global Public Health Chapel Hill, NC
Dr. Abby B. Sandler	Executive Secretary President's Cancer Panel Special Assistant to the Director Rare Tumors Initiative Center for Cancer Research National Cancer Institute Bethesda, MD
Dr. Urmimala Sarkar	Associate Professor Medicine in Residence University of California, San Francisco San Francisco, CA @UrmimalaSarkar
Dr. Richard L. Schilsky	Chief Medical Officer American Society of Clinical Oncology Alexandria, VA @rschilsky
Dr. Nirav R. Shah	Senior Vice President Chief Operating Officer Quality and Operations Kaiser Permanente Southern California Pasadena, CA @niravrshah
Ms. Emily S. Van Laar	Director Oncology Medical Strategy WebMD/Medscape Savage, MN @MedscapeOnc
Dr. John T. Wald	Medical Director Public Affairs and Marketing Mayo Clinic Rochester, MN @JohnWaldMD
Dr. Owen N. Witte	Member President’s Cancer Panel Distinguished Professor of Microbiology, Immunology, and Molecular Genetics David Geffen School of Medicine University of California, Los Angeles Director Eli and Edythe Broad Center of Regenerative Medicine and Stem Cell Research Los Angeles, CA

Summary

The President’s Cancer Panel held the second workshop in its series on connected health and cancer on March 26, 2015, in San Francisco, California. The workshop, entitled The Personal Health Data Revolution, Connected Health, and Cancer, brought together leaders in academia, technology, government, advocacy, and health care. Selected invitees delivered brief presentations, and participants discussed the current personal health data landscape and ways in which personal health data could be utilized for individual health management, health care, public health, and research.

Personal health data are being captured via an expanding and increasingly diverse set of devices, apps, services, and systems, ranging from wearable devices to social media and electronic health records. In addition to recording traditional medical data, these tools facilitate collection of information on social and environmental factors that has the potential to improve health and quality of life.

Workshop participants noted that enhanced access to and meaningful integration of personal health data could improve both quality of cancer care and quality of life for patients and enhance cancer control and prevention for individuals at risk of cancer. Moreover, they noted the role of connected health in facilitating both formal and informal communication on many levels. However, barriers to access and integration exist. Policies and practices often make it difficult for patients to access their own medical data and hamper data sharing among institutions and providers. Interoperable platforms needed to facilitate data integration, as well as common standards for personal health data, also are lacking. Importantly, data must be presented in meaningful ways to inform decision making by individuals and health care providers. When used optimally, integrated data systems should enhance patient engagement and patient-provider communication.

Participants discussed opportunities for research created by large-scale data integration. In addition to interoperable platforms and open-access policies, development of effective informed consent and deidentification processes would help researchers effectively utilize the wide range of personal health data being generated. New metrics and methods able to accommodate large, integrated data sets would complement traditional research methods. Several participants emphasized that research should be participatory and patient-centered, with patients involved in hypothesis generation, study design, and analysis.

Participants advocated for broad stakeholder involvement in efforts to achieve a connected health system, which will require action beyond the health care system. Findings and recommendations from the series will be presented in the Panel’s 2014–2015 Report to the President of the United States.

The Personal Health Data Revolution, Connected Health, and Cancer

Agenda

Participants

Summary

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