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.

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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.

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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, χ 2 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.