The rapid development of immuno-oncology (I-O) therapies for multiple types of cancer has transformed the cancer treatment landscape and brightened the long-term outlook for many patients with advanced cancer. Responding to ongoing efforts to generate value assessments for novel therapies, multiple stakeholders have been considering the question of “What makes I-O transformative?” Evaluating the distinct features and attributes of these therapies, and better characterizing how patients experience them, will inform such assessments. This paper defines ways in which treatment with I-O is different from other therapies. It also proposes key aspects and attributes of I-O therapies that should be considered in any assessment of their value and seeks to address evidence gaps in existing value frameworks given the unique properties of patient outcomes with I-O therapy. The paper concludes with a “data needs catalogue” (DNC) predicated on the belief that multiple key, unique elements that are necessary to fully characterize the value of I-O therapies are not routinely or robustly measured in current clinical practice or reimbursement databases and are infrequently captured in existing research studies. A better characterization of the benefit of I-O treatment will allow a more thorough assessment of its benefits and provide a template for the design and prioritization of future clinical trials and a roadmap for healthcare insurers to optimize coverage for patients with cancers eligible for I-O therapy.
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.
33 Background: In the current climate of health care reimbursement, coverage reform, and escalating health care costs, navigating cancer care becomes increasingly complex for patients and caregivers. Given the truly fluid marketplace and many payment and care models being established sans engagement with or even information from the patient, it is imperative to assess the ongoing reality of patient access to comprehensive, quality cancer care: care that includes biomedical as well as psychosocial care. Methods: We launched an online research survey project to further explore the cancer patient experience as it relates to accessing health care and living within a new and evolving system of health care. The analysis is based upon a cross-sectional survey of adults (18 years old and older) affected by cancer. The survey was conducted online between June and August of 2016. 1,218 cancer survivors completed survey questions regarding access to insurance, services, and providers as well as direct and indirect costs of care. Results: 78% of patients with cancer either have not or do not recall discussing costs with their health care team prior to treatment. 53.5% of survey respondents reported not knowing the meaning of the term “Clinical Practice Guidelines,” and 73% of participants had never heard the term “Clinical Pathway.” 25% of patients experienced delays in accessing cancer care, 18% of patients reported that costs inhibited them from filling prescription drugs to treat their cancer, 22% of patients chose not to get some of the healthcare services they needed due to high out-of-pocket costs, and 53% reported not receiving social or emotional support. Conclusions: These findings demonstrate that despite progress being made in expanding access to health care, many patients still experience significant barriers and challenges to accessing care. We also find there is a gap in patient knowledge about practice guidelines and payment policies. To create a system where all patients have access to high-quality and comprehensive cancer care, educational efforts are needed to enhance patient understanding of information about practice guidelines and payment policies, including information regarding health risk and benefits, costs, patient health, and quality-of-life outcomes.
Healthcare expenditures in the United States continue to grow; to control costs, there has been a shift away from volumefocused 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.
As part of the NCCN 20th Annual Conference: Advancing the Standard of Cancer Care, a distinguished and diverse group of experts on value-based decision-making in oncology discussed guidelines and pathways and how their use has impacted bedside evidence-based decision-making for both physicians and patients. Moderated by Clifford Goodman, PhD, the roundtable also reflected on the criteria used to assess shared decision-making and the relationship between outcomes and cost when determining value.
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