Engaging Stakeholders to Develop a Patient-centered Research Agenda: Lessons Learned From the Research Action for Health Network (REACHnet).

BACKGROUND: Patient-centered research requires a focus on the needs and priorities of patients. Because patient engagement can result in the discovery of important topics not currently prioritized by research programs, topic generation, and prioritization activities conducted with patients, caregivers, and other stakeholders are essential. To develop patient-centered research agendas for obesity and diabetes, the Research Action for Health Network conducted topic generation and prioritization activities with multistakeholder research advisory groups. OBJECTIVES: The purpose of this case study was to demonstrate how methods for engaging patients in topic generation and prioritization can be implemented in practice for the development of a patient-centered research agenda. RESEARCH DESIGN: Four multistakeholder groups comprising patients, clinicians, and researchers met 4-5 times between November 2014 and July 2015 to generate and prioritize topics for obesity and diabetes research. Topics were prioritized using an iterative engagement process, in which themes were identified and resulting topics were refined and ranked over multiple meetings. PARTICIPANTS: Sixty-four patients, clinicians, and researchers participated in 2 obesity and 2 diabetes advisory groups. The majority of participants (64.0%) were patients, followed by clinicians (23.4%), researchers (9.4%), and parents of children with diabetes (3.1%). RESULTS: Ten and 12 priority topics were identified for obesity and diabetes, respectively. The resulting research agendas were disseminated to patients, researchers, and clinicians. CONCLUSIONS: Patient engagement has the potential to enrich our understanding of patient priorities for research. The results from this process suggest that convening in-person multistakeholder groups can be an effective way to generate research topics that reflect patients' priorities. Engagement strategies should be focused not only on the development of patient-centered research topics but also on the implementation of these topics into research studies.

Economic Evaluation of a Nonmedical Financial Assistance Program on Missed Treatment Appointments Among Adults With Cancer.

PURPOSE: We retrospectively evaluated the clinical and economic impact of a program providing nonmedical financial assistance on missed treatment appointments among patients receiving cancer treatment at a large, Southeastern public hospital system. MATERIALS AND METHODS: We used patient electronic health records, program records, and cancer registry data to examine the impact of the program on rates of missed (or no-show) radiation therapy and infusion chemotherapy/immunotherapy appointments in the 180 days after treatment initiation. We used propensity weighting to estimate the effect of the program, stratified by treatment appointment type (radiation therapy, infusion chemotherapy/immunotherapy). We developed a decision tree-based economic model to conduct a cost-consequence analysis from the health system perspective in a hypothetical cohort over a 6-month time horizon. RESULTS: Of 1,347 patients receiving radiation therapy between 2015 and 2019, 53% (n = 715) had ≥1 no-shows and 28% (n = 378) received program assistance. Receipt of any assistance was associated with a 2.1 percentage point (95% CI, 0.6 to 3.5) decrease in the proportion of no-shows, corresponding to a 51% decrease in the overall mean no-show proportion. Under the current funding model, the program is estimated to save the health system $153 in US dollars per missed appointment averted, relative to not providing nonmedical financial assistance. Of the 1,641 patients receiving infusion chemotherapy/immunotherapy, 33% (n = 541) received program assistance, and only 14% (n = 223) had ≥1 no-shows. The financial assistance program did not have a significant effect on no-show proportions among infusion visits. CONCLUSION: This study used a novel approach to retrospectively evaluate a nonmedical financial assistance program for patients undergoing active cancer treatment. Findings support investment in programs that address patients' nonmedical financial needs, particularly for those undergoing intensive radiation therapy.

Barriers to COVID-19 vaccine uptake among resource-limited adults diagnosed with chronic illness.

Background: Despite the use of interventions (e.g., monetary incentives, educational campaigns, on-site workplace vaccination) to increase COVID-19 vaccination, differences in uptake persist by poverty level, insurance status, geography, race, and ethnicity, suggesting that these interventions may not be adequately addressing the barriers faced by these populations. Among a sample of resource-limited individuals with chronic illnesses, we (1) described the prevalence of different types of barriers to the COVID-19 vaccination and (2) identified associations between patients' sociodemographic characteristics and barriers to vaccination. Methods: We surveyed a national sample of patients with chronic illness and demonstrated healthcare affordability and/or access challenges about barriers to COVID-19 vaccination in July 2021. We categorized participant responses into cost, transportation, informational, and attitudinal barrier domains and assessed the prevalence of each domain, both overall and by self-reported vaccination status. Using logistic regression models, we examined unadjusted and adjusted associations between respondent characteristics (sociodemographic, geographic, and healthcare access) and self-reported barriers to vaccination. Results: Of 1,342 respondents in the analytic sample, 20% (264/1,342) reported informational barriers and 9% (126/1,342) reported attitudinal barriers to COVID-19 vaccination. Transportation and cost barriers were reported much less commonly, by only 1.1% (15/1,342) and 0.7% (10/1,342) of the sample, respectively. Controlling for all other characteristics, respondents with either a specialist as their usual source of care or no usual source of care had an 8.4 (95% CI: 1.7-15.1) and 18.1 (95% CI: 4.3-32.0) percentage point higher predicted probability, respectively, of reporting informational barriers to care. Compared to females, males had an 8.4% point (95% CI: 5.5-11.4) lower predicted probability of reporting attitudinal barriers. Only attitudinal barriers were associated with COVID-19 vaccine uptake. Conclusion: Among a sample of adults with chronic illnesses who had received financial assistance and case management services from a national non-profit, informational and attitudinal barriers were more commonly reported than logistical or structural access barriers (i.e., transportation and cost barriers). Interventions should target attitudinal barriers among patients with chronic illness, who may have particular concerns about the interaction of the vaccine with ongoing medical care. Additionally, interventions targeting informational barriers are particularly needed among individuals without a usual source of care.

Association of patient-reported financial barriers with healthcare utilization among Medicare beneficiaries with a history of cancer.

PURPOSE: We examined characteristics associated with financial barriers to healthcare and the association of financial barriers with adverse healthcare events among US adult cancer survivors enrolled in Medicare. METHODS: We used nationally representative Medicare Current Beneficiary Survey data (2011-2013, 2015-2017) to identify adults with a history of non-skin cancer. We defined financial barriers as cost-related trouble accessing and/or delayed care in the prior year. Using propensity-weighted multivariable logistic regression, we examined associations between financial barriers and adverse healthcare events (any ED visits, any inpatient hospitalizations). RESULTS: Overall, 11.0% of adult Medicare beneficiaries with a history of cancer reported financial barriers in the prior year, with higher burden among beneficiaries < 65 years of age vs. ≥ 65 (32.5% vs. 8.2%, p < 0.0001) and with annual income < $25,000 vs. ≥ $25,000 (18.1% vs. 6.9%, p < 0.0001). In bivariate models, financial barriers were associated with a 7.8 percentage point (95% CI: 1.5-14.0) increase in the probability of ED visits. In propensity-weighted models, this association was not statistically significant. The association between financial barriers and hospitalizations was not significant in the overall population; however, financial barriers were associated with a decreased probability of hospitalization among Black/African American beneficiaries. CONCLUSIONS: Despite Medicare coverage, beneficiaries with a history of cancer are at risk for experiencing financial barriers to healthcare. In the overall population, financial barriers were not associated with ED visits or hospitalizations. IMPLICATIONS FOR CANCER SURVIVORS: Policies limiting Medicare patient out-of-pocket spending and care models addressing health-related social needs are needed to reduce financial barriers experienced.

Facing financial barriers to healthcare: patient-informed adaptation of a conceptual framework for adults with a history of cancer.

Background: Cancer-related financial hardship is associated with negative clinical outcomes, which may be partially explained by cost-related delayed or forgone care in response to financial barriers. We sought to understand patient experiences facing financial barriers to medical care following a cancer diagnosis. Methods: We conducted virtual, semi-structured interviews in Fall 2022 with 20 adults with a history of cancer who had experienced cancer-related financial hardship in the prior year. We used template analysis within a pragmatic paradigm, combining constructivist and critical realist theoretical perspectives, to analyze interview transcripts and adapt an existing conceptual framework of financial barriers to care. Results: The majority of interviewees identified as women (70%), non-Hispanic white (60%), and reported an annual household income of <$48,000 (60%). As interviewees sought to overcome financial barriers, they described substantial frustration at the limitations and complexities of United States health and social care systems, resulting in a reliance on a fragmented, uncertain resource landscape. The administrative burden resulting from bureaucratic systems and the advocacy responsibilities required to navigate them ultimately fell on interviewees and their caregivers. Thus, participants described their ability to overcome financial barriers as being influenced by individual and interpersonal factors, such as social support, comfort asking for help, time, prior experience navigating resources, and physical and mental health. However, participants noted health system organizational factors, such as whether all new patients proactively met with a social worker or financial navigator, as having the potential to lessen the administrative and financial burden experienced. Conclusion: We present an adapted conceptual framework outlining multi-level factors influencing patient experiences coping with financial barriers to medical care. In addition to influencing whether a patient ultimately delays or forgoes care due to cost, financial barriers also have the potential to independently affect patient mental, physical, and financial health.

Stakeholder engagement infrastructure to support multicenter research networks: Advances from the clinical research networks participating in PCORnet.

Background: The evidence based on the inclusion of patients and other stakeholders as partners in the clinical research process has grown substantially. However, little has been reported on how stakeholders are engaged in the governance of large-scale clinical research networks and the infrastructure used by research networks to support engagement in network-affiliated activities. Objectives: The objective was to document engagement activities and practices emerging from Clinical Research Networks (CRNs) participating in PCORnet, the National Patient-Centered Clinical Research Network, specifically regarding governance and engagement infrastructure. Methods: We conducted an environmental scan of PCORnet CRN engagement structures, assets, and services, focusing on network oversight structures for policy development and strategic decision-making. The scan included assets and services for supporting patient/stakeholder engagement. Data were collected by searching web-based literature and tool repositories, review of CRN Engagement Plans, analysis of previously collected key informant interviews, and CRN-based iterative review of structured worksheets. Results: We identified 87 discrete engagement structures, assets, and services across nine CRNs. All CRNs engage patients/stakeholders in their governance, maintain workgroups and/or staff dedicated to overseeing engagement strategies, and offer one or more services to non-CRN researchers to enhance conducting engaged clinical research. Conclusions: This work provides an important resource for the research community to explore engagement across peers, reflect on progress, consider opportunities to leverage existing infrastructure, and identify new collaborators. It also serves to highlight PCORnet as a resource for non-CRN researchers seeking to efficiently conduct engaged clinical research and a venue for advancing the science of engagement.

Navigating Access to Cancer Care: Identifying Barriers to Precision Cancer Medicine.

OBJECTIVE: Precision medicine is revolutionizing cancer treatment. However, there has been limited investigation of barriers patients endure to access precision cancer medicine. This study aims to report the experiences of underserved patient populations with limited access to genomic testing, clinical trials, and precision cancer treatment. METHODS: A mixed-method study was employed to quantitatively evaluate patients (N=300) seeking precision cancer medicine between January 2014- August 2017. Qualitatively, we conducted semi-structured interviews with eight case managers who navigate the health care and health insurance systems to provide patients with access to precision cancer medicine care. All interviews were analyzed to identify themes. RESULTS: Within our patient cohort, 69% were diagnosed in stage I of cancer disease. Overall, 27 patients (9%) were denied treatment as a final outcome of their case due to insurance denials, 35 patients (12%) died before gaining access to precision cancer medicine, and 6 patients (2%) received precision cancer medicine through clinical trials. Four broad thematic areas emerged from the qualitative analysis: 1) lack of patient, provider and insurer knowledge of precision cancer medicine; 2) barriers to clinical trial participation; 3) lack of patient health literacy; and 4) barriers to timely access to care. CONCLUSION: Our combined analyses suggest that both system-level and patient-level barriers limit patient access to precision cancer medicine options. Additionally, we found that these barriers may exist not only for traditionally underserved patients, but also for resourced and insured patients trying to access precision cancer medicine.

Health insurance and financial hardship in cancer survivors during the COVID-19 pandemic.

Uninsured or underinsured individuals with cancer are likely to experience financial hardship, including forgoing healthcare or non-healthcare needs such as food, housing, or utilities. This study evaluates the association between health insurance coverage and financial hardship among cancer survivors during the COVID-19 pandemic. This cross-sectional analysis used Patient Advocate Foundation (PAF) survey data from May to July 2020. Cancer survivors who previously received case management or financial aid from PAF self-reported challenges paying for healthcare and non-healthcare needs during the COVID-19 pandemic. Associations between insurance coverage and payment challenges were estimated using Poisson regression with robust standard errors, which allowed for estimation of adjusted relative risks (aRR). Of 1,437 respondents, 74% had annual household incomes <$48,000. Most respondents were enrolled in Medicare (48%), 22% in employer-sponsored insurance, 13% in Medicaid, 6% in an Affordable Care Act (ACA) plan, and 3% were uninsured. Approximately 31% of respondents reported trouble paying for healthcare during the COVID-19 pandemic. Respondents who were uninsured (aRR 2.58, 95% confidence interval [CI] 1.83-3.64), enrolled in an ACA plan (aRR 1.86, 95% CI 1.28-2.72), employer-sponsored insurance (aRR 1.70, 95% CI 1.23-2.34), or Medicare (aRR 1.49, 95% CI 1.09-2.03) had higher risk of trouble paying for healthcare compared to Medicaid enrollees. Challenges paying for non-healthcare needs were reported by 57% of respondents, with 40% reporting trouble paying for food, 31% housing, 28% transportation, and 20% internet. In adjusted models, Medicare and employer-sponsored insurance enrollees were less likely to have difficulties paying for non-healthcare needs compared to Medicaid beneficiaries. Despite 97% of our cancer survivor sample being insured, 31% and 57% reported trouble paying for healthcare and non-healthcare needs during the COVID-19 pandemic, respectively. Greater attention to both medical and non-medical financial burden is needed given the economic pressures of the COVID-19 pandemic.

Racial and Ethnic Differences in the Financial Consequences of Cancer-Related Employment Disruption.

INTRODUCTION: Cancer-related employment disruption contributes to financial toxicity and associated clinical outcomes through income loss and changes in health insurance and may not be uniformly experienced. We examined racial/ethnic differences in the financial consequences of employment disruption. METHODS: We surveyed a national sample of cancer patients employed at diagnosis who had received assistance from a national nonprofit about the impact of cancer diagnosis and treatment on employment. We used logistic regression models to examine racial/ethnic differences in income loss and changes in health insurance coverage. RESULTS: Of 619 cancer patients included, 63% identified as Non-Hispanic/Latinx (NH) White, 18% as NH Black, 9% as Hispanic/Latinx, 5% as other racial/ethnic identities, and 5% unreported. Over 83% reported taking a significant amount of time off from work during cancer diagnosis and treatment, leading to substantial income loss for 64% and changes in insurance coverage for 31%. NH Black respondents had a 10.2 percentage point (95% CI: 4.8 - 19.9) higher probability of experiencing substantial income loss compared to NH White respondents, and Hispanic or Latinx respondents had a 12.4 percentage point (95% CI: 0.3 - 24.5) higher probability compared to NH White respondents, controlling for clinical characteristics (i.e., cancer type, stage and age at diagnosis, and time since diagnosis). Similarly, NH Black respondents had a 9.3 percentage point (95% CI: -0.7 - 19.3) higher probability of experiencing changes in health insurance compared to NH White respondents, and Hispanic or Latinx respondents had a 10.0 percentage point (95% CI: -3.0 - 23.0) higher probability compared to NH White respondents. DISCUSSION: Compared with NH White respondents, NH Black and Hispanic/Latinx respondents more commonly reported employment-related income loss and health insurance changes. Given documented racial/ethnic differences in job types, benefit generosity, and employment protections as a result of historic marginalization, policies to reduce employment disruption and its associated financial impact must be developed with a racial equity lens.

Non-Face-to-Face Chronic Care Management: A Qualitative Study Assessing the Implementation of a New CMS Reimbursement Strategy.

Diabetes and its comorbidities are leading causes of morbidity and mortality in the United States and disproportionately in Louisiana. Chronic care management (CCM) efforts, such as care coordination models, are important initiatives in mitigating the impact of diabetes, such as poorer health outcomes and increased costs. This study examined one such effort, the Centers for Medicare & Medicaid Services' non-face-to-face CCM reimbursement program, for patients with diabetes and at least 1 other chronic condition in Louisiana. This qualitative study included interviews with patients in this program and health care providers and system leaders implementing the program. Results include lessons learned from health system leadership relating to CCM design and implementation, challenges experienced, overlapping initiatives, perceived benefits, performance, billing, and health information technology. Another key finding is that co-pays seem to be a barrier to patient interest in participation in non-face-to-face CCM, especially given that the value of the program is not completely clear to patients. A common strategy to address this co-pay barrier is to target dual eligibles, as Medicaid will cover the co-pay. However, widespread use of such strategies may indirectly exclude individuals who need and may also benefit from non-face-to-face CCM.