The Connected Cancer Patient: Vision for the Future and Recommendations for Action

Meeting Information: July 9, 2015 | 8:00 a.m. - 4:45 p.m. | Chicago, IL 60611

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).

Agenda

Participants

Summary

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.

Download the full meeting summary.