Improving Cancer-Related Outcomes with Connected Health

A Report to the President of the United States from the President's Cancer Panel



Connected health is creating significant new opportunities to improve the quality and experience of health and healthcare in the United States and around the world. Cancer—with its complex biology, multispecialty care teams, transitions between treatment phases, and profound impact on the lives of patients and families—is an area of healthcare likely to benefit especially from improved coordination, communication, information access, and health behavior change facilitated by connected health. The capacity to share and integrate data also has the potential to expedite scientific discovery, enabling identification and development of strategies to more effectively prevent and treat cancers.

Technologies with potential to support connected health have been adopted widely by individuals, healthcare providers, healthcare organizations, researchers, and other National Cancer Program stakeholders. These technologies have yielded some positive results, but the full vision of connected health for cancer has not yet been achieved. Technological and cultural barriers to information sharing persist, and apps and tools intended to support individuals and providers often fall short. The challenges to connected health are considerable, but they can be overcome. While technologies play a fundamental role in connected health, the actions recommended by the President’s Cancer Panel in this report reflect the Panel’s view that a clear and unwavering focus on the following guiding principles is even more important.

People, not technologies, must be at the center of connected health for cancer. The promise of connected health will be realized only if technologies are designed and implemented to meet the needs, preferences, and values of people—healthy individuals, patients, caregivers, healthcare delivery team members, and others. Ideally, technologies will be seamlessly embedded into people’s lives, providing access to information, supporting engagement, and bolstering productivity without imposing additional burden or causing frustration. The opportunity to participate in connected health must be available to everyone, regardless of income, education, race, or geography. Uneven dissemination of technology, as has been the case to date, could exacerbate existing inequities in health and health outcomes in the United States. Extraordinary efforts are needed to assure that the benefits of connected health extend to all populations.

Timely access to data is imperative. Everyone involved in an individual’s care—the person, designated caregivers, and all healthcare providers—must have timely access to data in meaningful and usable formats. Currently, lack of interoperability among health IT systems impedes the effective and efficient flow and use of health information. Barriers to interoperability must be overcome, and individuals and designated caregivers must be provided the means to access and share their information.

A culture of collaboration will accelerate progress. Overcoming technical barriers to information exchange is critical but is insufficient. Providers, healthcare organizations, researchers, and other stakeholders should collaborate and freely share clinical and research data to support patient-centered clinical care and drive discovery within the bounds of privacy rules. Patients and members of the public should be engaged as important partners in their care and in cancer research, and encouraged to provide input on research priorities as well as contribute data.

The challenges facing connected health cannot be addressed by any single organization or agency. The President’s Cancer Panel agrees with Vice President Biden that progress in cancer can be accelerated if collaboration becomes the norm. The Panel urges all stakeholders—health IT developers, healthcare organizations, healthcare providers, researchers, government agencies, and individuals—to collaborate in using connected health to reduce the burden of cancer through prevention and improve the experience of cancer care for patients and providers. In the end, the purpose of connected health is to improve knowledge, engagement, processes, and quality of cancer care, and, thereby, to save lives and improve quality of life for millions of people living with cancer.

"[The fight against cancer] requires a lot more openness. Open data, open collaboration, and above all, open minds." —Vice President Joseph Biden, June 6, 2016, Chicago, IL