Part 3:

High-Priority Research to Advance Connected Health for Cancer

Additional research in several areas could increase the benefits of connected health for cancer. Better tools and interfaces could be developed if more were known about how healthcare providers work collaboratively and the factors that enhance people’s engagement with their health and healthcare. Research also is needed to ensure that the vast quantities of data being generated can be used in meaningful ways to support patient-centered care.

1. Improve understanding of how connected health can enable effective teamwork in healthcare.

Cancer care routinely is delivered by diverse teams of professionals working collaboratively with patients and caregivers across numerous medical and community settings.[1,2] Effective and efficient communication among team members is essential to achieve care goals and accurately relay information such as test results, treatment plans, or referrals for specialized services. Health IT tools can extend the reach and effectiveness of care teams and support team communication across the cancer continuum.[3] For example, an EHR-based tool can connect patients to community-based tobacco cessation services and, using a “closed-loop” function, send a notification back to the provider on the referral’s outcome (see Connecting Primary Care Patients to Tobacco Cessation Quit Line Services). Although this and other emerging examples of tools to support delivery of team-based care are encouraging, a more complete understanding is needed regarding how to improve team performance through connected communication channels across care settings, including into the home through patient portals and smart devices. A particular research focus should be on enhancing continuity of care and reducing the types of medical errors that occur when information is “handed off” from one member of the care team to the other. Understanding how to improve communication effectiveness within teams should have the added benefit of improving efficiency and the experience of care for both patients and healthcare providers. In addition, efforts are needed to describe cognitive, motivational, and behavioral influences on care teams and to characterize complex team structures and communication processes.[1,4] Methods to best engage patients and caregivers as active team members also should be explored.[5]

2. Identify strategies to enhance individuals’ engagement in their healthcare.

Understanding patients’ and families’ interactions with health systems is now recognized as an important area of health services research. The potential benefits of individuals’ active participation in their own healthcare is well documented (see Objective 2 ), but cancer patients continue to have unmet information needs and frequently are not fully connected to their care teams.[6] Although existing connected health tools address some patient needs, the tasks, technologies, responsibilities, and expectations involved in personal health management continue to increase in complexity.[7] Researchers are applying methods from a wide range of fields—from behavioral psychology to economics—to explore factors that influence active participation at various points across the care continuum. For example, a framework developed in partnership with patients describes ways that patients and families can be involved in healthcare decisions in multiple areas, including at the point-of-care, organizational, and policy levels.[8] Further research is needed to understand factors influencing whether and to what extent patients and families participate in healthcare (see Patient Engagement: Key Knowledge Needs). Solutions for addressing knowledge, skill, and technological barriers, among others, should be explored.[8-11] An enhanced evidence base could inform development of improved tools and strategies for achieving and sustaining engagement, and, ultimately, improving cancer-related and other health outcomes in line with the needs and preferences of patients and families.

3. Develop approaches for using data from connected devices in meaningful ways to enhance clinical care.

Individuals increasingly are using wearable devices and smartphone apps to collect health-related data and help them reach personal health goals. These person-generated health data provide valuable insights into people’s everyday lives—including factors that influence cancer risk and outcomes—and have potential to help healthcare providers deliver more patient-centered care. Among other things, personal devices can be used to gather patient-reported outcomes (e.g., symptom self-reporting), which can enhance quality of care.[12-14] However, additional research is needed to determine how to integrate person-generated health data collected by connected devices into clinical care. This includes research on ways to monitor and manage symptoms of cancer patients and cancer survivors, a recommendation of the Cancer Moonshot Blue Ribbon Panel.[15] Devices and tools must be validated to ensure that they provide clinically useful information (see Validating New Tools to Inform Chemotherapy Decisions), and feasibility studies are needed to determine whether patients’ use of connected devices in real-world settings yields meaningful data. Work also must be done to determine which devices, channels, and types of data are most relevant for various populations and situations. Researchers are beginning to explore this area (see Using Person-Generated Data in Cancer Research in Objective 5 ), but a broader array of studies is needed. Methodologies and tools also should be developed to ensure that the vast amounts of data collected are provided to healthcare providers and individuals in meaningful and actionable formats.

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