CURRENT STATE OF PATIENT-CENTERED CANCER HEALTH ECONOMICS RESEARCH

Cancer is one of the most expensive diseases to treat in the United States. Spending associated with cancer was estimated to be $183 billion in 2015 (in 2019 dollars) and is projected to increase to $246 billion in 2030, based on population growth and aging.1 With increasing costs of cancer treatments and greater intensity of care, these projections are likely conservative; increases in spending may be even larger. Cancer is also expensive for patients and their families, incurring high out-of-pocket costs for medical care and lost wages due to time away from work for patients and informal caregivers. Patients and their families frequently experience financial hardship (adverse economic consequences due to cancer treatment), including problems paying medical bills, worry and distress about their financial situation, and delaying or forgoing needed medical care due to costs.2,3 Accumulating evidence describes the adverse effects of financial hardship on health among survivors with a cancer history, which also includes worse health-related quality of life and greater mortality risk.4–9 However, data resources that include information on financial hardship generally do not include details of cancer treatment, whereas clinical resources with detailed information on cancer treatment (eg, electronic medical records or claims data) are lacking in patient-reported impacts of the costs of cancer care. For example, while SEER-Medicare is widely used in studies of cancer treatment patterns, this data resource provides information on cancer care received (or rather, cancer care paid for by Medicare) but not on other patient out-of-pocket costs, including costs for nonmedical care related to cancer treatment (eg, transportation, child/dependent care, and missed work) and on associated financial hardship. Furthermore, SEER-Medicare includes only individuals who have Medicare coverage; costs associated with cancer care for individuals who do not have Medicare coverage and care paid for by supplemental private insurance (eg, Medigap policies) are not captured.

Although the financial impacts of cancer are a primary focus for many cancer health economics research studies, it is important to also evaluate the costs and benefits (health and economic) of programs and technologies for other types of cancer-relevant care. Beyond cancer treatment, economic evaluations are also needed for interventions to help prevent cancer (eg, genetic screenings and programs to decrease risk factors associated with lifestyle); screen for cancer among asymptomatic populations (eg, multicancer detection tests); and provide high-quality patient-centered care among cancer survivors. Thus, cancer health economics research is critical across the entire cancer control continuum.

FRAGMENTATION OF CANCER HEALTH ECONOMICS RESEARCH

Cancer health economics research has the potential to provide information and intervention strategies that will improve health care and patient-centered outcomes across the cancer control continuum, including services for cancer prevention, screening, treatment, and survivorship. On the basis of changes in the annual number of published studies in cancer health economics research over time, research in this field has increased substantially during the past years.10 However, a key challenge to further development of this area is fragmentation among organizations active in this domain. That is, multiple organizations collect data, conduct research, fund research, and/or disseminate findings from cancer health economics research. Furthermore, communication and collaboration among these diverse organizations is often limited. Sharing of information and resources to further cancer health economics research goals is uncommon. This in part reflects the diversity of the organizations engaged in this area. Figure 1 illustrates the main types of government agencies and nonprofit organizations involved in aspects of cancer health economics research.

FIGURE 1:

Types of nonprofit and Federal Government Organizations engaged in aspects of cancer health economics patient-centered outcomes research (PCOR). A diverse range of organizations are engaged in cancer health economics research, contributing to the fragmentation of this field.

This range of organizations reflects the multiple aspects of cancer control and the fragmented nature of data needed for cancer health economics research. For example, to develop a comprehensive research database capturing all components related to cancer control for a population, information would first be needed on each individual’s characteristics, such as demographics and socioeconomic status; risk factors (including genetic, behavioral, environmental, and occupational); and previous and current medical history. Data would also be needed on the physical environment where individuals live; aspects of their home, neighborhood, and region that might affect cancer control; availability of health care providers; and other aspects of social determinants of health. Information on local, regional, and national policies that may affect cancer control activities would also need to be gathered. Beyond this, data are needed on patient-centered aspects of cancer control: factors affecting health-related quality of life; ability to perform activities of daily living; financial hardship; valuing patient’s time; and preferences related to cancer prevention, screening, and treatment as well as interactions with health care providers. Interest in each of these diverse areas, as well as the collection of data or development of data resources for each, varies substantially among the different types of organizations engaged in cancer health economics research. However, no one organization has information across the entire cancer control continuum. To enhance data capacity in the field of cancer health economics research and improve patient outcomes, it is critical for organizations to share information and data resources; collaborate in developing methods and implementing research programs; and work together to disseminate findings needed by patients, health care providers, medical care organizations, decision-makers, payers, and others involved in cancer control.

INTERAGENCY CONSORTIUM TO PROMOTE HEALTH ECONOMICS RESEARCH ON CANCER

The Interagency Consortium to Promote Health Economics Research on Cancer (HEROiC) was developed to help address the fragmentation of cancer health economics research and encourage collaboration across organizations. HEROiC was founded as a collaboration between the National Cancer Institute (NCI), the Centers for Disease Control and Prevention, and the American Cancer Society. HEROiC recently expanded membership to other government agencies and nonprofit organizations across the cancer control continuum to collaboratively develop, enhance, and utilize data resources and infrastructure for patient-focused cancer health economics research, that is, cancer health economics research conducted from a patient perspective and/or incorporating patient-reported outcomes. The overall goal of HEROiC is to promote health economics research on cancer by bringing together government agencies and cancer-focused nonprofit organizations. This includes a focus on stimulating research and program evaluation on the economic impacts and outcomes of cancer across the entire cancer control continuum.11 The aims of HEROiC include:

Assessing the economic burden of cancer from the perspectives of patients and their families, health care providers, employers, health insurers, and society overall; Examining the effects of public policies, health care settings/systems factors, and health service delivery approaches on cancer economic outcomes; Encouraging the use of appropriate economic methods and integration of measures of the patient-centered economic burden of cancer into research studies and clinical practice; and Enhancing coordination and collaborations among cancer economics researchers and partner organizations.

Although the first aim focuses on economic evaluations among individuals diagnosed with cancer, aims 2–4 apply to all components of the cancer control continuum, from prevention and screening through survivorship care. The ultimate objective of HEROiC’s activities is to improve access to high-quality cancer care and reduce the economic burden of cancer in the United States by:

Using cancer-focused health services and health economic research to inform clinical practice and policy; Building capacity for high-quality cancer economic research and policy analyses; Raising awareness of the importance of cancer economic outcomes, particularly to patients and their families and caregivers; and Creating and supporting the dissemination of evidence-based information on cancer economics to diverse stakeholders, including patients, health care providers, and policy makers

Accomplishments of HEROiC include planning and implementation of the Future of Cancer Health Economics Research Conference on December 2–3, 2020.12 This virtual conference included presentations on challenges to conducting cancer health economics research and participatory discussions on activities to support and enhance the development of this field. More than 400 individuals registered for this virtual conference, representing agencies within the federal government, nonprofit organizations, cancer centers, and academic institutions. After the conference, a group of organizers and speakers developed a supplement to the Journal of the National Cancer Institute (JNCI), with papers describing the conference proceedings and summarizing the needed next steps for cancer health economics research (https://academic.oup.com/jncimono/issue/2022/59).

Information for organizations interested in joining HEROiC is available at https://healthcaredelivery.cancer.gov/heroic/membership.html.

HEROIC SUPPORT FOR PATIENT-CENTERED DATA CAPACITY FOR CANCER HEALTH ECONOMICS RESEARCH

HEROiC has helped foster several collaborative activities to address data capacity for cancer health economics research. The JNCI monograph resulting from the Future of Cancer Health Economics Research virtual conference described above included a paper on “New Data Resources, Linkages, and Infrastructure for Cancer Health Economics Research.”13 This paper, a collaboration among researchers from the NCI, a university, a cancer center, and a health care data solutions organizations, focused on the need for more comprehensive data that better capture the patient-centered cancer care experience. These needs include information that represents more diverse populations; contains more clinical details; and provides greater context on individual-level and neighborhood-level factors that can affect cancer prevention, screening, treatment, and survivorship, including measures of financial health or toxicity, health-related social needs, and social determinants of health.

HEROiC has also been engaged in developing data resources for patient-centered cancer health economics research. One of these data resources is the Medical Expenditure Panel Survey (MEPS) Experience With Cancer Survivorship Supplement (ECSS). The MEPS is an annual US household survey conducted by the Agency for Healthcare Research and Quality.14 MEPS collects comprehensive and nationally representative data on health care utilization and expenditures. The ECSS is a supplement to the MEPS that collects detailed information from individuals who have been diagnosed with cancer. This includes information about access to care, financial hardship, effects of cancer diagnosis and treatment on employment, and health-related quality of life.15 These data offer a rich resource for patient-centered health economics research. The ECSS was fielded in 2011, 2016, and 2017 and included multiple questions focused on patient-centered aspects of cancer costs and financial issues, such as borrowing money/going into debt due to cancer or cancer treatment; being unable to cover the medical costs for cancer care; and worrying about paying large medical bills related to cancer. As shown in Figure 2, the proportion of individuals with a cancer diagnosis who borrowed money/went into debt due to cancer and the proportion who were unable to cover cancer medical care costs remained constant over time. However, patients worried about paying cancer care medical bills at substantially higher rates than they borrowed money or were unable to cover medical bills. Moreover, the proportion who indicated this worry increased between 2011 and 2016/2017.

FIGURE 2:

Proportion of respondents to the Medical Expenditure Panel Survey (MEPS) Experience with Cancer Survivorship Supplement who indicated borrowing money/going into debt; being unable to cover medical care bills; or worrying about paying medical care bills due to cancer. Weighted analyses from the MEPS Experience with Cancer Survivorship Supplement, presenting changes in 3 patient-centered economic measures among cancer survivors responding to this survey in 2011, 2016, and 2017.

HEROiC members are leading the development of new questions for the ECSS and analysis of existing ECSS data. To date, >25 studies have been published using the ECSS to examine the economic burden of cancer.16 Since the ECSS database is available for public use, it continues to be used for studies on the patient-centered economic burden of cancer.

Researchers from HEROiC member organizations also coordinate the NCI Patterns of Care (POC) study. POC is a congressionally mandated initiative to evaluate the dissemination of state-of-the-art cancer therapy and diagnostics into community oncology practice and identify factors associated with receipt and utilization of cancer care.17 Each year, NCI collaborates with a group of population-based cancer registries to identify a sample of individuals diagnosed with one of 2–4 specified types of cancer and collect detailed information on individual characteristics (including insurance status), treatment, and outcomes through medical chart data abstraction. On the basis of input from HEROiC members, the 2019 POC study added a new question on whether included individuals had engaged in a financial or cost discussion with their health care providers. Preliminary results indicate that approximately one quarter of patients had a financial/cost discussion documented in their medical records.

DISSEMINATION OF PATIENT-CENTERED CANCER HEALTH ECONOMICS RESEARCH DATA AND FINDINGS

The objectives for HEROiC include raising awareness regarding cancer economic outcomes and supporting dissemination of information on cancer economics to diverse stakeholders. Both objectives include patients and their families and caregivers as key audiences for cancer health economics findings and data, as well as researchers, health care providers, and policy makers. A manuscript from the JNCI Monograph discussed above focused on communicating research to nonresearcher audiences.18 As discussed in this manuscript, health economics research is highly relevant to the lay public, who may be all too familiar with medical care copayments, surprise bills, and challenges with care affordability. Recommendations from the manuscript include disseminating research findings through news media and social media, distilling findings into a clear and “quotable” message that avoids technical/scientific language, and relaying national or other large-scale economic findings into a narrative with implications for individuals and families.

HEROiC member organizations recognize the importance of disseminating data and findings from cancer health economics research to broad audiences, including nonresearchers. Data and publications from the MEPS ECSS are available online.15,16 Publications from the NCI Patterns of Care Study are also available online.19 Select data from the Patterns of Care Study have been made freely available to the public through an online tool called Patterns of Care Explorer (POC*Explorer).20 This online tool will be expanded with additional data in the future. New initiatives to disseminate research data include the development of a cancer health economics data resource directory, which will identify data fields in publicly available datasets that can be used for economic studies. There is also exploration of developing a hospital resource directory, which would compile publicly available information on US hospitals that treat individuals with cancer to help patients and their families make more informed treatment decisions.

THE FUTURE OF COLLABORATION FOR PATIENT-CENTERED CANCER HEALTH ECONOMICS RESEARCH

HEROiC members continue to develop data systems, resources, and capacity for patient-centered cancer health economics research. Current plans include a series of collaborative cancer health economics research conferences to bring together stakeholders from diverse organizations involved in cancer health economics research with the goal of identifying areas of shared interest and developing plans for collaborative activities. The first of these collaborative conferences was held in May 2023, which focused on facilitating collaboration and communications among individuals from government agencies and nonprofit professionals, patient advocacy, and payer organizations engaged in cancer health economics research.

To plan for this conference, an online survey was circulated among potential participants to solicit input on interest in the conference and potential agenda topics. More than three quarters of survey respondents indicated being “very interested” (the highest response level) in a collaborative conference on cancer health economics research. Results for potential agenda topics are presented in Figure 3, using a 5-point scale (with 5 indicating topics of greatest interest). Among the topics presented in this Figure, “Collecting data for health equity issues/underserved populations” and “Linking existing data resources to create new data resources” received the highest interest from survey respondents (n=26).

FIGURE 3:

Ratings of Potential Agenda Topics for the Cancer Health Economics Research Collaborative Conference. Ratings of potential topics for the forthcoming Cancer Health Economics Research Collaborative Conference, provided by 26 individuals at US federal agencies and nonprofit organizations. Ratings were provided in an online survey circulated by NC, with level of interest in each topic scored 1–5 (5=highest interest).

On the basis of the information from this survey and discussions from the prior Future of Cancer Health Economics Research conference, this “Cancer Health Economics Research Collaborative Conference” was structured around interactive breakout session with the following 2 goals (https://events.cancer.gov/hdrp/healtheconresearch):

Identify areas of shared interest in cancer health economics research Implement plans for studies and other collaborative activities to further this field

The conference included 4 sets of breakout sessions:

Collecting novel data for cancer health economics research Enhancing scope and usability of existing cancer health economics data resources Communication and implementation science in cancer health economics research Brainstorming potential cancer health economics research collaborative analyses/projects

Key conclusions from the interactive discussions at this conference included the following:

To develop innovative data resources, it will be important to partner with diverse stakeholders, including caregivers, employers/employer groups, clinicians, health care systems, clinical trial networks, decision-makers/policy makers, patient-advocacy organizations, cancer-focused professional organizations, and electronic health record companies. Data from patients are needed to understand economic factors affecting decision-making and priority outcomes; data should be collected throughout all phases of cancer control using standardized instruments and methods. An increased focus on patient time and associated costs for cancer prevention, screening, treatment, and survivorship care is needed. Training is needed for health care professionals on economic data collection, including the rationale for collecting economic information and standardized resources to facilitate these activities. Documentation in medical records of communications between patients and clinicians regarding economics impacts of cancer care should be required and standardized; it may be important to incentivize these communications. Economic data collection is often an “afterthought” in studies across the cancer control continuum; greater focus on including economic data collection and analyses from the start of a study, including implementation costs, is needed. However, this also requires consideration of what data elements are truly important for cancer health economics research, including costs important to policy makers, and avoiding the burden of collecting noncritical elements. Cancer health economics researchers should understand how to communicate research findings and implications with nonresearch audiences; this will involve training programs, exploration of nonresearch communications channels, and partnering with patients and patient advocates. Cancer care clinicians are very busy and time constrained; there needs to be consideration of staffing in clinical settings, particularly who will be responsible for collecting economic information and leading financial interventions (eg, financial navigation). Future cancer health economics research will include increased emphasis on multiple approaches, including evaluation of costs in parallel to clinical trials; studies in diverse clinical care settings; and modeling/simulations. Reviews will continue to serve an important role in cancer health economics research. More conferences like this are needed for economic researchers to discuss shared interests and opportunities for collaboration. CONCLUSIONS

Data resources to study patient-centered economic outcomes associated with cancer control are highly fragmented. This reflects both the wide range of cancer-related costs that may affect patients and diverse organizations that are engaged in cancer health economics research. As no single data resource or system will have all the types of data to evaluate patient economic outcomes relevant to cancer control, it is necessary to build data capacity through collaborations.

HEROiC is one approach for facilitating cancer health economics research collaborations. By providing an opportunity for government agencies and nonprofit organizations to discuss priorities, share data resources, and develop partnerships, HEROiC may enhance both the understanding of patient-centered economic outcomes related to cancer and the development of programs and interventions to reduce financial burdens among patients. Furthermore, HEROiC can serve as a foundation for jointly creating new data systems that capture and share economic outcomes important to patients but are often not currently available. For example, there is limited information on how patients value their time for cancer prevention, screening, treatment, and survivorship activities; new data resources can help address this and other patient-centered economic issues.

Following the collaborative cancer health economics research conferences, participants will prepare a paper focusing on collaboration opportunities, challenges to these opportunities, and defined steps to implement these collaborations. This may serve as a framework for enhancing data capacity and infrastructure critical to patient-centered economic outcomes across the cancer control continuum as well as the basis for future HEROiC-organized conferences.

ACKNOWLEDGMENTS

The authors thank funding from the Office of the Assistant Secretary for Planning and Evaluation (ASPE) to support the Symposium on Building Data Capacity to Study Economic Outcomes for Patient-Centered Outcomes Research that was held on December 5, 2022, and provided an opportunity for the authors to present their work and receive feedback from attendees.

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