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. 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.
Connecting Primary Care Patients to Tobacco Cessation Quit Line Services
Researchers at the University of Wisconsin-Madison teamed up with Dean Health Systems and its EHR vendor, Epic Systems Corporation, to create a closed-loop EHR tool called eReferral. Once patients are identified as tobacco users as part of the standard EHR clinic workflow, eReferral prompts providers to offer tobacco cessation quit line telephone services to those patients. If the patients express interest, electronic referrals are sent to the Wisconsin Tobacco Quit Line. Quit Line staff contact the patients, provide counseling and over-the-counter cessation medication, and send documentation of the outcome of the referrals back to patients’ EHRs so providers are aware of the key outcomes. Quit Line referrals increased dramatically when eReferral was implemented. Importantly, feedback from key stakeholders, including clinicians, was integrated during the development process.
Sources: Adsit RT, Fox BM, Tsiolis T, Ogland C, Simerson M, Vind LM, et al. Using the electronic health record to connect primary care patients to evidence-based telephonic tobacco quitline services: a closed-loop demonstration project. Transl Behav Med. 2014;4(3):324-32. Available from: http://www.ncbi.nlm.nih.gov/pubmed/25264471; Lindholm C, Adsit R, Bain P, Reber PM, Brein T, Redmond L, et al. A demonstration project for using the electronic health record to identify and treat tobacco users. WMJ. 2010;109(6):335-40. Available from: http://www.ncbi.nlm.nih.gov/pubmed/21287886
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. 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. 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. 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.
Patient Engagement: Key Knowledge Needs
- Define full range of actions that individuals have the option to perform to achieve maximum benefit from healthcare.
- Identify factors, or combination of factors, that have greatest impact on patient engagement.
- Identify optimal, effective methods that organizations and policy makers can use to enhance opportunities for meaningful participation.
- Determine best practices for translating research findings into routine care in ways that benefit patients and healthcare providers.
Sources: Carman KL, Dardess P, Maurer M, Sofaer S, Adams K, Bechtel C, et al. Patient and family engagement: a framework for understanding the elements and developing interventions and policies. Health Aff (Millwood). 2013;32(2):223-31. Available from: http://www.ncbi.nlm.nih.gov/pubmed/23381514; Center for Advancing Health. A new definition of patient engagement: what is engagement and why is it important? Washington (DC): CFAH; 2010. Available from: http://www.cfah.org/pdfs/CFAH_Engagement_Behavior_Framework_current.pdf
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. 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.
Validating New Tools to Inform Chemotherapy Decisions
Individuals with cancer who are active are better able to tolerate and benefit from chemotherapy than are those who are sedentary. Currently, oncologists assess patients’ activity levels and overall wellness by asking a set of defined questions during appointments, but there are drawbacks to this approach—it depends on patients’ ability to remember, is subject to patient and physician bias, and does not capture how patients are doing outside the clinic. Wearable sensors that collect information about patients’ daily activities may provide more accurate and comprehensive insights. Oncologists at Cedars-Sinai Samuel Oschin Comprehensive Cancer Institute are conducting a validation study to determine whether Fitbits can provide useful information on patients with cancer. To do this, Fitbit data will be compared with data from traditional functional status assessment tools and correlated with patient toxicity and survival outcomes.
Sources: Cedars-Sinai trial uses Fitbit to better understand patients' functional status. HemOnc today [Internet]. 2016 Mar 15 [cited 2016 Aug 9]. Available from: http://www.healio.com/hematology-oncology/breast-cancer/news/online/%7B24968163-c464-485a-9b88-068959cd78fc%7D/cedars-sinai-trial-uses-fitbit-to-better-understand-patients-functional-status; Shinde AM, Gresham GK, Hendifar AE, Tuli R, Spiegel B, Figlin RA. Biosensors to assess performance status in cancer (BioAPS Study). J Clin Oncol (Meeting Abstracts). 2016;34(15):TPS6631. Available from: http://meeting.ascopubs.org/cgi/content/short/34/15_suppl/TPS6631?rss=1
- Taplin SH, Weaver S, Salas E, Chollette V, Edwards HM, Bruinooge SS, et al. Reviewing cancer care team effectiveness. J Oncol Pract. 2015;11(3):239-46. Available from: http://www.ncbi.nlm.nih.gov/pubmed/25873056
- Mitchell P, Wynia M, Golden R, McNellis B, Okun S, Webb CE, et al. Core principles & values of effective team-based health care (Discussion Paper). Washington (DC): Institute of Medicine; 2012 Oct. Available from: https://www.nationalahec.org/pdfs/vsrt-team-based-care-principles-values.pdf
- Institute of Medicine. Delivering high-quality cancer care: charting a new course for a system in crisis. Levit L, Balogh E, Nass S, Ganz P, editors. Washington (DC): The National Academies Press; 2013 Sep 10. Available from: https://www.nap.edu/18359
- Kuziemsky CE, Borycki EM, Purkis ME, Black F, Boyle M, Cloutier-Fisher D, et al. An interdisciplinary team communication framework and its application to healthcare "e-teams" systems design. BMC Med Inform Decis Mak. 2009;9:43. Available from: http://www.ncbi.nlm.nih.gov/pubmed/19754966
- Wynia MK, Von Kohorn I, Mitchell PH. Challenges at the intersection of team-based and patient-centered health care: insights from an IOM working group. JAMA. 2012;308(13):1327-8. Available from: http://www.ncbi.nlm.nih.gov/pubmed/23032546
- CancerCare. 2016 CancerCare patient access and engagement report. New York (NY): CancerCare; 2016. Available from: http://www.cancercare.org/accessengagementreport
- Clancy CM. Patient engagement in health care. Health Serv Res. 2011;46(2):389-93. Available from: http://www.ncbi.nlm.nih.gov/pubmed/21371026
- Carman KL, Dardess P, Maurer M, Sofaer S, Adams K, Bechtel C, et al. Patient and family engagement: a framework for understanding the elements and developing interventions and policies. Health Aff (Millwood). 2013;32(2):223-31. Available from: http://www.ncbi.nlm.nih.gov/pubmed/23381514
- Hibbard JH, Mahoney ER, Stockard J, Tusler M. Development and testing of a short form of the patient activation measure. Health Serv Res. 2005;40(6 Pt 1):1918-30. Available from: http://www.ncbi.nlm.nih.gov/pubmed/16336556
- Hibbard JH, Mahoney ER, Stock R, Tusler M. Do increases in patient activation result in improved self-management behaviors? Health Serv Res. 2007;42(4):1443-63. Available from: http://www.ncbi.nlm.nih.gov/pubmed/17610432
- Institute of Medicine. Best care at lower cost: the path to continuously learning health care in America. Smith M, Saunders R, Stuckhardt L, McGinnis JM, editors. Washington (DC): The National Academies Press; 2012. Available from: http://nap.edu/13444
- Basch E, Deal AM, Kris MG, Scher HI, Hudis CA, Sabbatini P, et al. Symptom monitoring with patient-reported outcomes during routine cancer treatment: a randomized controlled trial. J Clin Oncol. 2016;34(6):557-65. Available from: http://www.ncbi.nlm.nih.gov/pubmed/26644527
- Jensen RE, Snyder CF, Abernethy AP, Basch E, Potosky AL, Roberts AC, et al. Review of electronic patient-reported outcomes systems used in cancer clinical care. J Oncol Pract. 2014;10(4):e215-22. Available from: http://www.ncbi.nlm.nih.gov/pubmed/24301843
- Basch E. The rationale for collecting patient-reported symptoms during routine chemotherapy. Am Soc Clin Oncol Educ Book. 2014:161-5. Available from: http://www.ncbi.nlm.nih.gov/pubmed/24857073
- Cancer Moonshot Blue Ribbon Panel. Cancer Moonshot Blue Ribbon Panel Report 2016. Bethesda (MD): National Cancer Institute; 2016 Oct 17. Available from: https://www.cancer.gov/research/key-initiatives/moonshot-cancer-initiative/blue-ribbon-panel