The Future of Patient Engagement in the Oncology Setting: How Practical Patient Engagement Recommendations and Innovative Inter-Professional Education Can Drive Change
Summary: Patient engagement is a National Quality Strategy priority and is especially pertinent to oncology care, since cancer treatment can be complex and involves shared decision making between patients and different health care providers. However, patient engagement remains inconsistently and ineffectively implemented. We convened a round-table discussion with stakeholders and experts in patient engagement to address innovative, practical recommendations for patient engagement in oncology. We highlight emerging ways that provider and patient education can be delivered to support patient engagement, as well as research opportunities associated with engagement in oncology.
Keywords: Oncology, patient engagement, reimbursement, policy, shared decision making, learning health system.
Citation: Bosworth HB, Pini TM, Walters CB, Sih-Meynier R. The future of patient engagement in the oncology setting: how practical patient engagement recommendations and innovative inter-professional education can drive change. J Participat Med. 2017 Apr 11; 9:e7.
Published: April 11, 2017.
Competing Interests: Dr. Bosworth has received grant funding from Sanofi, Takeda, Improved Patient Outcomes that went to Duke University to cover costs of his research team to conduct research. Dr. Bosworth also received consulting funds from Sanofi, Regeneron Pharmaceuticals, CVS, Blue Cross/Blue Shield of Arkansas, and Walgreens. Dr. Sih-Meynier is an employee at Genentech, Inc, and owns stock options. Dr. Pini is an employee of Premier, Inc, and owns stock options. Drs. Bosworth, Pini, and Burrows Walters received an honorarium from Genentech to participate in the roundtable that was used to generate ideas contained in the manuscript. The views expressed in this article are those of the author(s) and do not necessarily represent the position or policy of Duke University, the US Department of Veterans Affairs, or the US government.
Funding Sources: This project was funded by the Learning and Clinical Integration group within US Medical Affairs, Genentech, Inc. Dr. Bosworth was supported by a research career scientist award from VA Health Service Research and Development (VA HSR&D 08-027). Alexandra Howson MA, PhD, CHCP of Thistle Editorial, LLC, who was paid by Genentech, assisted in drafting and editing the manuscript. All authors confirm they have contributed to and reviewed the manuscript.
Widely recognized as a critical component of quality care, patient engagement has received growing attention in oncology. Patient engagement is being driven by legislative changes, payment reform, and federal mandates in health care that support the goals of the National Quality Strategy to improve quality of care, lower cost, and improve population health.  Broadly, patient engagement involves healthcare systems providing information and acknowledging individual preferences to enable patients to take actions and make decisions in order to obtain the greatest benefit from available healthcare (Center for Advancing Health’s definition of patient engagement).  Patient engagement can help patients to make decisions and implement behavioral changes that result in improved satisfaction,  better outcomes, and lower costs of care.  It is recognized that in order for patients to be engaged, both providers and patients need access to resources, tools, and education that foster engagement skills.  Shared decision-making is often considered a key component of patient engagement,  and is central to the Institute of Medicine’s (IOM) framework for developing high-quality cancer care.  For the current paper, we focus predominantly on the patient-provider interaction, but acknowledge that engagement is broader and includes additional areas of focus such as asking questions, seeking out other sources of information, and challenging provider beliefs and decisions.
While various stakeholders have called for health care reform that is patient-centric, there are few data on how oncology healthcare providers and systems can best implement strategies that support patient engagement. Therefore, we convened a round table of stakeholders and experts in patient engagement to identify evidence-based practical recommendations for patient engagement in oncology. Based on this discussion, we present innovative methods of delivering education for health care providers (HCPs) and patients, and review the advantages of the oncology medical home as a setting for engagement.
Experts in oncology care and patient engagement were invited to join a working group to discuss the current state of patient engagement in the context of the CMS Oncology Care Model and other value-based payment models.  Experts were drawn from patient advocacy, Medical Oncology and Surgical Oncology, population health, informatics/technology, patient education, oncology nursing, behavioral science, and research (see Appendix). The goal of the meeting was to identify barriers and challenges that exist to engage patients in decision making for oncology care. Experts were asked to provide practical recommendations for oncology clinicians to engage with patients. The authors used these insights as a guide for identifying research questions that will need to be addressed to build an evidence base to support implementation of patient engagement in oncology.
Unique Challenges to Patient Engagement in Oncology Settings
The nature of cancer care requires patients to process large amounts of information during times of distress while navigating a complex health care system.  Concomitantly, because cancer treatment necessitates multidisciplinary care, patients frequently have to take an active role in the coordination of their care.  In addition, the continuing evolution of cancer care to include oral chemotherapy and targeted therapy treatments, and the increase in the number of treatment options for both cancer-directed therapy and supportive management, necessitates greater reliance on patients and their caregivers to manage complex medical tasks. Patients’ needs also change along the cancer continuum, requiring flexibility in how clinicians engage patients.
Addressing the needs of patients when providing oncology care requires that the health care system, including infrastructure and processes of care, be designed to support patient engagement in meaningful ways. For instance, patient preferences should be incorporated when deciding on a treatment plan. This engagement practice can result in behavior changes with potential to improve both the quality of care and patient outcomes and reduce health care costs — the goals of the Triple Aim.  As such, patient engagement is a critical component in the shift toward value–based care. However, as interest in shared decision making has increased, the goal is not to bend the cost curve alone, but rather to align treatment with patient preferences and improve quality of care. Similarly, shared decision making should not be a method for rationing of care. Both of these positions misrepresent the principles of shared decision making. 
Patient Engagement as a Dimension of Value-Based Care
Patient engagement is embedded in the Patient Protection and Affordable Care Act and is an integral component of care delivery to optimize population health management, deliver high-value care, and achieve success in value-based payment programs. These new reimbursement models provide a mechanism for providers and health care delivery networks to contract with payers in ways that reward providers for improvements in managing the health of their populations by coupling payment to outcomes, patient experience, and cost of care. 
The Oncology Care Model (OCM) is a program that shares cost savings with oncology practices for episodes of care triggered by chemotherapy administration, if certain population health management services are in place, such as navigation and care plans, and high quality care is achieved.  The CMS Quality Payment Program begins in 2017 and will impact clinician payments starting in 2019, including payments to oncology providers.  Clinician payment incentives and penalties will be based on the Merit Based Incentive Payment System, which will reward providers for high quality and efficient care, high patient experience scores, meaningful use of certified electronic health record (EHR) technology, and clinical practice improvement work. Commercial payers are also in the process of developing new payment models for cancer care. And most recently, CMS announced two new models specifically for patient engagement, the Shared Decision Making Model (SDM Model) and the Direct Decision Support Model (DDS Model).  As new payment models, aligned with quality domains and measures that prioritize patient engagement, begin to affect oncology practice, it is important that oncology providers implement strategies that support patient engagement. To this end, roundtable discussants identified several evidence-based interventions that provide an empowering and supportive environment that encourages patient engagement, and that oncology providers can consider implementing in their practice setting.  Coordination of oncology care places great burden on patients, their caregivers, and health care providers. Accordingly, communication is particularly important in oncology because patients’ attitudes and preferences may change over the course of treatment and over time.  Studies, including a recent systematic review, show that clinician-focused education on how to employ patient-centered communication techniques can improve communication and engagement in cancer settings (Table 1).  These techniques include use of open-ended questions, demonstrating empathy to others, eliciting patient’s values and preferences and ensuring understanding of options.
Table 1. Strategies and Techniques that Support Patient Engagement Interactions. 
Best Practices to Support Effective Patient Engagement in Oncology
These techniques include limiting the number of key points discussed in a visit to three or fewer, using the ask-tell-ask approach to establish clear goals, and to confirm and reinforce patient understanding. Similarly, providers can foster patient engagement by using open-ended questions to enable patients in clarifying their own priorities for care and making treatment choices that are fully informed and consistent with their personal preferences and values. Web-based, written, or multimedia decision tools have been shown to help patients decipher the risks and benefits of treatment and make decisions that are consistent with their preferences, values, and needs.  Patient-directed education on communication techniques can also help to build patients’ confidence in asking questions that are critical to making health care decisions. 
The communication continuum in patient engagement needs to be non-disruptive and seamlessly integrated into a given practice environment. EHR systems can facilitate integration of patient engagement into practice by creating links between patient diagnoses and treatment plans, generating reports for clinical quality measures, integrating clinical decision support, and providing electronic messaging between providers. Patient portals can also facilitate patient engagement in the oncology setting. Patient portals allow for secure messaging between patients and providers, and exchange of patient-generated data, potentially improving communication and care while reducing the frequency of traditional in-office visits. 
System Support for Health Literacy.
At the system level, effective engagement interventions for patients with low health literacy include offering educational materials that adhere to best practices with regard to health literacy. Strategies for facilitating understanding include using large font, short sentences written in plain language, pictures, clear headings, and text written at a fifth-grade level. System level literacy support for patient engagement also includes using clinical information systems to provide real-time reminders during patient visits,  reduce patient burden by eliminating redundancy, and implementing medication reconciliation strategies (eg, simplifying medication regimens, using pill-boxes or other medication organizers, creating clear instructions about medications by using consistent pharmacy codes for order entry).  Table 2 summarizes roundtable recommendations for implementing patient engagement in oncology that are also supported in the literature.
New Models of Patient Engagement in Oncology.
Innovative patient care models in oncology based on patient-centered medical home (PCMH) principles are now showing evidence of effectiveness. For instance, a recent review concluded that the oncology PCMH can significantly reduce emergency room visits, hospital admissions, and overall costs among patients being treated with chemotherapy.  The essential feature of the PCMH model is to retain the primacy of an ongoing relationship between patients and their health care providers which may be extended beyond the core team and include nurses, social workers, dieticians and clinical support staff, with whom both the patient and oncologist have an ongoing relationship. Moreover, the PCMH approach is proactive in rigorously assessing for, and addressing health risk factors, and in removing barriers (eg, communication, physical, temporal, financial) between the patient and health care team (Table 3). 
Notably, studies suggest that when the PCMH is implemented in ways that engage patients via real-time monitoring and interventions in between visits to reduce side effects and hospitalizations (eg, secure e-mail exchange and phone calls with care teams), patient experience, provider satisfaction, and efficiency are improved. 
Next Steps: Strategies for Implementing PE in Oncology
Continuing Education to Advance PE in Oncology.
As the policy and reimbursement framework continues to evolve, continuing education can be an effective mechanism for educating providers about best practices in communication to support patient engagement. However, because patient engagement is a multidimensional process that occurs at many levels within and across health systems, such education also needs to include patients and their caregivers alongside clinicians.  Health care educators are beginning to partner with patient advocacy organizations to develop tandem patient engagement, patient- and provider-directed education programs, and to create quality improvement programs that include patient engagement components. Such programs may collect and analyze engagement data (eg, via patient chart review; patient ratings of their providers’ engagement skills; patient/provider surveys to compare beliefs and values) in order to give personalized feedback to providers about their engagement skills and help them set personalized goals for behavioral change. 
Building a Research Base for Patient Engagement in Oncology.
Oncology providers need to consider their patient population and tailor patient engagement support to the specific individuals that they treat. Patients have heterogeneous needs which vary by demographics, comorbidities, location, level of family and caregiver support, literacy, culture, and goals of care.  Patients also vary in the degree of shared decision making they desire. Moreover, it remains unclear which universal metrics should be used to measure the effectiveness of patient engagement in oncology settings.
Given these challenges and historical lack of implementation of shared decision making and engaging patients, roundtable discussants concluded that research is needed to examine innovative interventions to support patient engagement in a variety of cancer care delivery settings, and to address the following identified gaps:
- Developing metrics for measuring patient engagement
- Defining the goal of shared decision making as a component of patient engagement in oncology
- Identifying how to use patient engagement in the patient’s cancer journey
- Determining which patient engagement interventions improve specific patient outcomes, such as morbidity, mortality, patient-reported outcomes (eg symptom distress, functional status, quality of life, satisfaction)
- Assessing the impact of leveraging lay and professional navigators on shared decision making and patient engagement
- Determining how to best scale effective interventions and how to measure intervention outcomes across different care sites
- Involving patients’ perspectives in determining priorities and designing effective implementation strategies
This paper highlights the growing role, importance, and benefits of patient engagement in the context of oncology care, as well as the policy changes associated with value-based care that are driving patient engagement. Roundtable experts highlighted several evidence-based interventions that address these challenges and support effective engagement. These interventions are ones that oncology providers can consider implementing in their practice settings and include communication techniques, technology, and new models of care delivery. It is also apparent that tandem provider and patient and caregiver education will be necessary to build skills across health care systems that support patient engagement, and to stimulate the behavioral and system changes associated with improvements in quality of care and patient outcomes. Finally, research is urgently needed on how best to design oncology infrastructure and processes of care that support patient engagement in meaningful ways and will further enable oncology providers to move from policy to practice.
All authors contributed significantly to the study. Conceptualization (HBB, RSM), writing (HBB, TMP, CBW, RSM), reviewing study (HBB, TMP, CBW, RSM). The authors would like to acknowledge those who participated in the Genentech/Premier sponsored roundtable entitled The Future of Patient Engagement within Learning Health Systems: Design, Measurement & Impact within the Oncology Setting, October 9, 2015: Gautam Gulati, MD, MBA, MPH, Ivy Altomare, MD, Michele Galioto, RN, MSN, Simone E. Karp, RPh, Sarah Krüg, Mazi Rasulnia, PhD, Carolyn C. Scott, RN, MEd, MHA, Bimal R. Shah, MD, MBA, Dianne Shumay, PhD, Chitra Subramaniam, PhD, Martha Zeiger, MD, Roni Zeiger, MD, MS.
- Millenson ML, Macri J. Will the Affordable Care Act Move Patient-Centeredness to Center Stage? Washington, DC: Urban Institute; 2012. ↩
- Gruman J, Rovner MH, French ME, et al. From patient education to patient engagement: implications for the field of patient education. Patient Educ Couns. 2010;78:350-356. ↩
- National Community Pharmacists Association. Medication Adherence in America: A National Report. 2013. Available at: http://www.ncpa.co/adherence/AdherenceReportCard_Abridged.pdf. Accessed June 21, 2016. ↩
- Mitchell SE, Gardiner PM, Sadikova E, et al. Patient activation and 30-day post-discharge hospital utilization. J Gen Intern Med. 2014;29(2):349-55. ↩
- Bosworth HB, Dubbard C, Ruppenkamp J, et al. Evaluation of a self-management implementation intervention to improve hypertension control among patients in Medicaid. Transl Behav Med. 2011;1(1):191-199. ↩
- Institute of Medicine. The Learning Health Care System and Its Innovation Collaboratives: Update Report. Washington DC: National Academies of the Sciences. 2013. ↩
- Ruggiero J, Robinson CO, Lutz Paynter N. Coordinated learning to improve evidence-based care: a model for continuing education for the new healthcare environment [white paper]. Genentech Medical Education Research Group; 2015. ↩
- Robert Wood Johnson Foundation. What We’re Learning: Engaging Patients Improves Health and Health Care. Available at: http://www.rwjf.org/content/dam/farm/reports/issue_briefs/2014/rwjf411217 Accessed June 21, 2016. ↩
- Menichetti J, Libreri C, C, Loza E, et al. Giving patients a starring role in their own care: a bibliometric analysis of the on-going literature debate. Health Expectations. 2014:doi: 10.1111/hex.12299. ↩
- Levitt L, Balogh E, Nass S, Ganz PA, eds: Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington D.C.: The National Academies Press. 2013: 91-152. ↩
- Oncology Care Model. Centers for Medicare & Medicaid Services. Available at: https://www.cms.gov/Newsroom/MediaReleaseDatabase/Fact-sheets/2016-Fact-sheets-items/2016-06-29.html. Accessed April 12, 2017. ↩
- Mitchell AJ, Chan M, Bhatti H, et al. Prevalence of depression, anxiety, and adjustment disorder in oncological, haematological, and palliative-care settings: a meta-analysis of 94 interview-based studies. Lancet Oncol. 2011;12:160–174. ↩
- Katz SJ., Hawley ST. From policy to patients and back: surgical treatment decision making for patients with breast cancer. Health Aff. 2007;26(3):761-9. ↩
- Berwick DM, Nolan TW, Whittington J. The triple aim: care, health, and cost. Health Aff (Millwood) 2008; 27(3): 759-69. ↩
- Elwyn, G., Tilburt, J., Montori VM, The ethical imperative for shared decision-making European Journal for Person Centered Healthcare, 2013. 1(1): p. 129-131. ↩
- Jordan M, VanLare AB, Conqway PH. Value-based purchasing: National programs to move from volume to value. New Engl J Med. 2012; 267:292-295. ↩
- Centers for Medicare & Medicaid Services. The Merit-Based Incentive Payment System (MIPS) & Alternative Payment Models (APMs): Delivery System Reform, Medicare payment Reform, & the MACRA. Available at: https://www.cms.gov/Medicare/Quality-Initiatives-Patient-Assessment-Instruments/Value-Based-Programs/MACRA-MIPS-and-APMs/MACRA-MIPS-and-APMs.html. Accessed June 21, 2016. ↩
- American Society of Clinical Oncology. MACRA: Transforming Oncology Practice. Available at: http://www.asco.org/advocacy/asco-action-brief-macra. Accessed June 21, 2016. ↩
- Centers for Medicare & Medicaid Services. Beneficiary Engagement and Incentives Models: General Information. Available at: https://innovation.cms.gov/initiatives/Beneficiary-Engagement/. Accessed April 12, 2017. ↩
- Centers for Medicare & Medicaid Services: Stage 2 Overview Tipsheet. Available at: https://www.cms.gov/Regulations-and-Guidance/Legislation/EHRIncentivePrograms/Downloads/Stage2Overview_Tipsheet.pdf. Accessed June 21, 2016. ↩
- Moore PM, Mercado R, Artiques GM, et al. Communication skills training for healthcare professionals working with people who have cancer. Cochrane Database Syst Rev 3. 2013:CD003751: doi: 10.1002/14651858. ↩
- Koh HK, Brach C, Harris LH, et al. A proposed ‘health literate care model’ would constitute a systems approach to improving patients’ engagement in care. Health Aff. 2013;32(2):357-67. ↩
- Alper J. Health Literacy: Past, Present, and Future: Workshop Summary. Washington, DC: National Academies Press, 2015. ↩
- Kovacs Burns K, Bellows M, Eigenseher C, et al. ‘Practical’ resources to support patient and family engagement in healthcare decisions: a scoping review. BMC Health Services Research. 2014;14:175. ↩
- Cochrane BS, Hagins M Jr, King JA, et al. Back to the future: Patient experience and the link to quality, safety, and financial performance. Healthc Manage Forum. 2015;28(6 Suppl):S47-58. ↩
- Agency for Healthcare Research and Quality. Health Literacy Measurement Tools (Revised). Available at: http://www.ahrq.gov/professionals/quality-patient-safety/quality-resources/tools/literacy/index.html#short. Accessed June 21, 2016. ↩
- Powers BJ, Trinh JV, Bosworth HB. Can this patient read and understand written health information? JAMA. 2007;304(1):76-84. ↩
- Mirkovic J, Kaufman DR, Ruland CM. Supporting cancer patients in illness management: usability evaluation of a mobile app. JMIR Mhealth Uhealth. 2014; 2(3):e33. doi: 10.2196/mhealth.3359. ↩
- O’Carroll Bantum E, Albright CL, White KK, et al. Surviving and Thriving With Cancer Using a Web-Based Health Behavior Change Intervention: Randomized Controlled Trial. J Med Internet Res. 2014; 16(2):e54. doi:10.2196/jmir.3020. ↩
- Page RD, Newcomer LN, Sprandio JD et al. The patient-centered medical home in oncology: from concept to reality. Am Soc Clin Oncol Ed Book. e82-9. doi: 10.14694/EdBook_AM.2015.35.e82, 2015. ↩
- Reid RJ, Fishman PA, Yu O, et al. Patient-centered medical home demonstration: a prospective, quasi-experimental, before and after evaluation. Am J Manag Care. 2009;15(9):e71-87. ↩
- Carman KL, Dardess P, Maurer M, et al. Patient and family engagement: a framework for understanding the elements and developing interventions and policies. Health Aff. 213;32(2):223-31. ↩
- Marshall JL, Cartwright T, Berry CA, et al. Implementation of a performance improvement initiative in colorectal cancer care. J Oncol Pract. 2012; 8(5):309-314. ↩
- Roque G, Van Laar E, Borate U, et al. Shared decision making in chronic lymphocytic leukemia: Mismatch between preferences and perceptions of patients, providers, and navigators. J Clin Oncol. 2016;34(suppl 7S; abstr 221). ↩
- Moreo K, Sapir T, Greene L. Applying Quality Improvement into Systems-based Learning to Improve Diabetes Outcomes in Primary Care. BMJ Qual Improv Rep. 2015;4(1): doi:10.1136/bmjquality.u208829.w3999.
Copyright: © 2017 Hayden B. Bosworth, T. May Pini, Chasity Burrows Walters, and Regina Sih-Meynier. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the authors, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.