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The Connected Cancer Patient: Vision for the Future and Recommendations for Action
Accumulating evidence suggests that connected health approaches could lead the way to better health outcomes; for example, by improving patient adherence to medication, facilitating access to specialty care, and reducing referral wait times, among other promising applications. Yet, it is not yet clear what a truly connected health system of the future looks like. In this integrative workshop, third in a series on connected health and cancer, the President’s Cancer Panel and invited participants will envision an interoperable health system that is integrated with—and adapted to—the real-world environments in which people live.
Participants will explore and recommend concrete actions that could accelerate the development of a patient-centered approach to cancer prevention, treatment, and survivorship in order to maximize the potential of connected health technologies. Participants will contemplate and respond to a scenario for a future connected health system by the year 2020 and consider key areas for potential intervention, including the following:
- Personal health information and data sharing
- Person- and family-centered care
- Optimal use of devices, sensors, and apps
- National health information infrastructure
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).
| 8:00 | Registration | |
| 8:30 | Welcome and Introductions | |
| 9:10 | Scenario 2020: Connected Health and Cancer Outcomes | |
| Overview and scenario process (5 minutes) Presentation of scenario (25 minutes)
Moderated discussion (30 minutes) |
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| 10:10 | Break | |
| 10:30 | Calibration of Assessment and Recommendations | |
| 10:45 | Personal Health Information and Data Sharing - Assessment and Recommendations | |
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| 11:45 | Public Comment | |
| 11:50 | Lunch | |
| 12:50 | Person- and Family-Centered Care - Assessment and Recommendations | |
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| 1:50 | Devices, Sensors, and Apps - Assessment and Recommendations | |
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| 3:00 | Break | |
| 3:15 | National Health Information Infrastructure - Assessment and Recommendations | |
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| 4:15 | Conclusions and Cross-Cutting Recommendations | |
| 4:30 | Public Comment | |
| 4:35 | Wrap-Up and Next Steps | |
| 4:45 | Adjourn |
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. Neeraj K. Arora
Senior Program Officer, Science
Patient-Centered Outcomes Research Institute
Washington, DC
Dr. Ethan Basch
Director
Cancer Outcomes Research Program
Associate Professor
Medicine and Public Health
University of North Carolina, Chapel Hill
Chapel Hill, NC
Dr. Donald M. Berwick
President Emeritus
Senior Fellow
Institute for Healthcare Improvement
Cambridge, MA
Dr. Wen-Ying Sylvia Chou
Program Director
Health Communication and
Informatics Research Branch
Division of Cancer Control and
Population Sciences
National Cancer Institute
Rockville, MD
Dr. Robert T. Croyle
Director
Division of Cancer Control and
Population Sciences
National Cancer Institute
Rockville, MD
Dr. Marcia R. Cruz-Correa
Associate Professor of Medicine and Biochemistry
Director
Basic and Translational Science
University of Puerto Rico
Comprehensive Cancer Center
San Juan, Puerto Rico
Dr. Karen Emmons
Vice President for Research
Director
Kaiser Foundation Research Institute
Oakland, CA
Ms. Janet Freeman-Daily
Lung Cancer Patient
Patient Advisory Board
Addario Lung Cancer Foundation
Federal Way, WA
@JFreemanDaily
Mr. Gilles J. Frydman
Chairman
Smart Patients
Mountain View, CA
@gfry
Dr. M. Chris Gibbons
Chief Health Innovation Officer
Federal Communications Commission
Chief Executive Officer
The Greystone Group, Inc.
Washington, DC
@mcgibbons
Dr. Bradford W. Hesse
Chief
Health Communication and
Informatics Research Branch
Division of Cancer Control and
Population Sciences
National Cancer Institute
Rockville, MD
@BradHesse
Dr. Katherine Kim
Assistant Professor
Betty Irene Moore School of Nursing
University of California, Davis
Davis, CA
@kimkater
Dr. Kenneth D. Mandl
Professor
Harvard Medical School
Children's Hospital Informatics Program
Boston Children's Hospital
Boston, MA
@mandl
Dr. Thomas A. Mason
Chief Medical Officer
Acting Director
Office of Programs and Engagement
Office of the National Coordinator for
Health Information Technology
U.S. Department of Health and
Human Services
Washington, DC
Dr. Olufunmilayo Olopade
Director
Center for Clinical Cancer Genetics
Professor of Medicine and Human Genetics
Associate Dean for Global Health
The University of Chicago
Chicago, IL
Dr. Aydogan Ozcan
Chancellor's Professor
Howard Hughes Medical Institute Professor
University of California, Los Angeles
Los Angeles, CA
Dr. Corrie Painter
Associate Director
Operations and Scientific Outreach
Broad Institute
Vice President
Angiosarcoma Awareness
Cambridge, MA
@Corrie_painter
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
Ms. Stacey Tinianov
Breast Cancer Patient, Advocate, and Blogger
Santa Clara, CA
@coffeemommy
Dr. John T. Wald
Medical Director
Public Affairs and Marketing
Mayo Clinic
Rochester, MN
@JohnWaldMD
Dr. Owen N. Witte
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
Scenario 2020: Connected Health and Cancer Outcomes
- Connected Health in Cancer: Future State—Drs. Hesse and Ahern
- Response to Scenario (transcript; audio)—Dr. Berwick
Devices, Sensors, and Apps—Assessment and Recommendations
- Democratization of Next-Generation Imaging, Sensing, and Diagnostics Toward Connected Health—Dr. Ozcan
National Health Information Infrastructure—Assessment and Recommendations
The President’s Cancer Panel held the third workshop in its series on connected health and cancer on July 9, 2015, in Chicago, Illinois. The workshop, entitled The Connected Cancer Patient: Vision for the Future and Recommendations for Action, brought together leaders from academia, technology, government, advocacy, and healthcare. Participants discussed the desired future state for connected health in cancer prevention and care and identified steps that could be taken to achieve identified goals by 2020. Discussion and recommendations focused on four areas: person- and family-centered care; personal health information and data sharing; devices, sensors, and apps; and national health information infrastructure.
The current healthcare delivery system suffers from many discontinuities in communication, which can result in inefficient and ineffective cancer prevention and care. Participants discussed a new patient-centered paradigm in which the needs and values of individuals and their families are central to care delivery, and all patients are closely connected to their providers. In addition, providers and other members of the care team are connected seamlessly. Health information technology can catalyze and support patient-centeredness and help achieve the Triple Aim of better care, better health, and lower costs. More research is needed to elucidate further the benefits of connected health. There also are opportunities to learn more about how to fully engage patients and the benefits that can be derived from engaged patients and an engaged public since at any one time, most people are not patients.
Participants envisioned a future in which widespread collection of personal health information and personal access to this information will lead to better self-management and contribute to a culture of health. Individuals will have the power to access and curate their data, and well-designed informed consent will facilitate widespread data sharing with healthcare professionals and researchers. Some personal health information will be gathered by the rapidly increasing array of devices, sensors, and apps. New and improved consumer-focused apps can increase the benefit of personal health information by providing personalized feedback to patients and collecting patient-reported outcomes. Devices, sensors, and apps also can contribute valuable data for research if they are validated and provide data in standard formats.
Achieving the promise of connected health for cancer prevention and care is contingent on a robust, interoperable health information infrastructure. Individuals will be able to participate fully in and benefit from connected health only if they have consistent and affordable broadband service. Data systems and tools, including electronic health records, will be most effective if designed to support both patient care and provider work flows. In addition, clinical care and research will be enhanced if information from disparate databases and systems can be linked and shared.
Findings and recommendations from the series will be presented in the Panel’s 2014–2015 Report to the President of the United States.
Presentation materials from the meeting can be accessed here, and a detailed meeting summary can be accessed here.