Evaluating the sustainability of patient navigation programs in oncology by length of existence, funding, and payment model participation.

BACKGROUND: For this study, the authors examined whether specific programmatic factors were associated with the sustainability of patient navigation programs. METHODS: This cross-sectional survey explored navigation programmatic factors associated with 3 measures of sustainability: 1) length of program existence, 2) reliance on sustainable funding, and 3) participation in alternative payment models. In total, 750 patient navigators or program administrators affiliated with oncology navigation programs in clinical-based and community-based settings completed the survey between April and July 2019. RESULTS: Associations were observed between both accreditation and work setting and measures of program sustainability. Accredited programs and larger, more resourced clinical institutions were particularly likely to exhibit multiple measures of sustainability. The results also identified significant gaps at the programmatic level in data collection and reporting among navigation programs, but no association was observed between programmatic data collection/reporting and sustainability. CONCLUSIONS: Navigation is not currently a reimbursable service and has historically been viewed as value-added in oncology settings. Therefore, factors associated with sustainability are critical to understand how to build a framework for successful navigation programs within the current system and also to develop the case for potential reimbursement in the future.

Solidifying roles, responsibilities, and the process of navigation across the continuum of cancer care: The Professional Oncology Navigation Task Force.

Since its founding in 1990, the profession of oncology navigation has grown and evolved. Although core concepts serve as a unifying thread throughout the profession, there has not been formal agreement on standardization of definitions, scopes, and roles for the various types of navigators. This has created challenges for sustainability, including reimbursement for navigation services. Emerging from the Biden Cancer Initiative's patient navigation working group, the Professional Oncology Navigation Task Force was created to serve as the voice of professional oncology organizations with an ultimate goal of solidifying definitions, scopes, and roles of navigators across the care continuum. Task group members are committed to cross-disciplinary partnership (including nursing, social work, and nonclinically licensed navigation). As the Task Force worked to define, refine, and disseminate professional standards (with input from the navigation community), the work done by the National Navigation Roundtable was vital to our evolving understanding of the profession. This article outlines the importance of that partnership and highlights the relevant findings of each article in this supplement of Cancer to the standardization work. LAY SUMMARY: Within the profession of oncology navigation, definitions, scopes, and roles of navigators have not been solidified. Standardization of the profession is critical to allow for continued growth and evolution as well as policy direction. This article introduces the work of the Professional Oncology Navigation Task Force, which created the Oncology Navigation Standards of Professional Practice with input from professional leaders and community stakeholders. The article also links the work of the National Navigation Roundtable and the critical need to coordinate and amplify efforts across groups.

Comparing clinical and nonclinical cancer patient navigators: A national study in the United States.

BACKGROUND: A nationwide survey was conducted to examine differences between clinical and nonclinical oncology navigators in their service provision, engagement in the cancer care continuum, personal characteristics, and program characteristics. METHODS: Using convenience sampling, 527 oncology navigators participated and completed an online survey. Descriptive statistics, χ2 statistics, and t tests were used to compare nonclinical (eg, community health worker) and clinical (eg, nurse navigators) navigators on the provision of various navigation services, personal characteristics, engagement in the cancer care continuum, and program characteristics. RESULTS: Most participants were clinical navigators (76.1%). Compared to nonclinical navigators, clinical navigators were more likely to have a bachelor's degree or higher (88.6% vs 69.6%, P < .001), be funded by operational budgets (84.4% vs 35.7%, P < .001), and less likely to work at a community-based organization or nonprofit (2.0% vs 36.5%, P < .001). Clinical navigators were more likely to perform basic navigation (P < .001), care coordination (P < .001), treatment support (P < .001), and clinical trial/peer support (P = .005). Clinical navigators were more likely to engage in treatment (P < .001), end-of-life (P < .001), and palliative care (P = .001) navigation. CONCLUSIONS: There is growing indication that clinical and nonclinical oncology navigators perform different functions and work in different settings. Nonclinical navigators may be more likely to face job insecurity because they work in nonprofit organizations and are primarily funded by grants.

Medicare Decision-making, Understanding, and Satisfaction Among Cancer Survivors.

With increased age as a leading risk factor for cancer, many patients depend on Medicare benefits to manage their disease. As such, this study explores (1) Medicare decision-making, (2) Medicare satisfaction, and (3) understanding of Medicare coverage among cancer patients. This cross-sectional study used focus group and survey methodology to explore patient decision-making regarding Medicare benefit selection and patient understanding and satisfaction of Medicare. Focus group findings informed a subsequent survey which was completed by 172 Medicare beneficiaries between December 2018 and January 2019. Quantitative and qualitative analyses were conducted. Findings suggest that although Medicare beneficiaries believe they understand their coverage and are largely satisfied with benefits, many cannot accurately identify the appropriate components of the program particularly regarding how drug benefits are structured. In-depth qualitative analyses from the focus group indicated not only a lack of understanding but a fear of unexpected out-of-pocket costs or coverage challenges. This study illustrates the ongoing challenges with educating Medicare beneficiaries regarding benefits, coverage, and financial obligations of the program. For cancer patients, in-depth and meaningful educational opportunities are critical as is access to multiple components of the Medicare program that can prove vital to the treatment and management of their disease.

Exploring the Experiences of Patients in the Oncology Care Model.

PURPOSE: The Oncology Care Model (OCM) was developed to improve care while also supporting patient-centered practices. This model could significantly affect experiences of patients with cancer; however, previous studies have not explored patient perspectives. PATIENTS AND METHODS: This cross-sectional study used focus group and survey methodology to explore patient experiences in the OCM. The sample included 213 patients (OCM patients, n = 130 recruited within OCM practices; non-OCM patients, n = 83 recruited via e-mail from the Cancer Support Community Cancer Experience Registry). RESULTS: Findings suggest that patients in OCM practices were more likely to report that their cancer care team asked about social/emotional distress or concerns and more likely to have social/emotional resources offered. OCM patients were also more likely to have discussed advance directives with providers. They were also more likely to be satisfied with provider explanations of treatment benefits as well as treatment risks and adverse effects. Lastly, OCM patients were significantly more satisfied with discussion of treatment costs and provided higher ratings of preparation by their cancer care team for management of adverse effects. CONCLUSION: Patients in this study reported experiences consistent with many of the key goals of the OCM. This is promising and may indicate the need to expand the model. However, because of the potential selection bias of our sampling method, more research is needed.

Cancer Patient Perspectives on Sharing of Medical Records and Mobile Device Data for Research Purposes.

Sharing data is critical to advancing science, improving health, and creating advances in the delivery of health care services. The value of sharing data for cancer research purposes is well established, and there are multiple initiatives under way that address this need. However, there has been less focus on cancer patient perspectives regarding the sharing of their health information for research purposes. This study examined cancer patient perspectives on the sharing of de-identified health data for research purposes including both data from medical records and mobile applications. This cross-sectional study used survey methodology to collect data from cancer patients/survivors (N = 677). Overall, we found that participants were largely willing (71%) to share de-identified medical data and were most motivated (88%) by a desire to help other cancer patients. Patients were less likely to be comfortable sharing mobile application data (34%). It is vital that we understand patient perspectives on data sharing and work with them as partners, valuing their unique contributions, and attending to their preferences.

Perspectives of Patients With Cancer on the Quality-Adjusted Life Year as a Measure of Value in Healthcare.

OBJECTIVES: Healthcare expenditures in the United States continue to grow; to control costs, there has been a shift away from volume-focused care to value-based care. The incorporation of patient perspectives in the development of value-based healthcare is critical, yet research addressing this issue is limited. This study explores awareness and understanding of patients with cancer about the quality-adjusted life year (QALY), as well as their perspectives regarding the use of the QALY to measure value in healthcare. METHODS: This cross-sectional study used survey methodology to explore patient awareness, understanding, and perspectives on the QALY. A total of 774 patients with cancer and survivors completed this survey in June and July of 2017. Quantitative and qualitative analyses were conducted. RESULTS: Results showed that there is limited awareness of the QALY among patients with cancer and survivors and minimal understanding of how the QALY is used. Only one quarter of respondents believed that the QALY was a good way to measure value in healthcare. Some participants (5%) stated that the QALY could be personally helpful to them in their own decision making, indicating the possible usefulness of the QALY as a decision aid in cancer care. Nevertheless, participants expressed concern about other decision makers using the QALY to allocate cancer care and resources and maintained a strong desire for autonomy over personal healthcare choices. CONCLUSIONS: Although participants believed that the QALY could help them make more informed decisions, there was concern about how it would be used by payers, policymakers, and other decision makers in determining access to care. Implications for policy and research are discussed.

Advance Care Planning Communication: Oncology Patients and Providers Voice their Perspectives.

Advance care planning helps to ensure that patients' end-of-life preferences are understood and discussed with providers. It is an important component of patient-centered care, particularly when patients are facing life-limiting illness. It also has ethical implications for providers, yet evidence suggests that these conversations are not always occurring, particularly in underserved populations. The aim of this study was to understand the challenges and personal beliefs regarding ACP through interviews with patients undergoing active cancer treatment and their oncology providers. This study took place at an urban, multispecialty cancer center in the mid-Atlantic region where approximately 1400 patients are treated each year. Findings revealed differences among both patients and providers in terms of their ACP knowledge, preferences, and practices. Overall, 70% of patients were familiar with advance directives (100% of White patients and 45.5% of Black patients), yet only 35% of them reported having completed one (55.6% of White patients and 18.2% of Black patients, although not statistically significant). Most providers (70%) held ACP conversations with patients with advanced illness only. They tended to make assumptions about the amount of information that patients desired and noted the significant challenges that were inherent with these types of conversations. Overall, ethical implications are inherent in ACP as patients are making medical decisions without always having necessary information. There are various reasons why providers may not supply information regarding potential outcomes and end-of-life planning and why patients may not request (or know to request) more medical information.