Using Public Deliberation to Set Priorities: The Case of COVID-19 Vaccine Access in New York City.

CONTEXT: The COVID-19 pandemic has resulted in a record number of deaths in the United States and tremendous economic and personal strain. During 2020, in anticipation of a vaccine to slow the spread of disease, local and state governments in the United States developed plans for vaccine prioritization, given a limited initial supply. Recognizing the challenges inherent in prioritization, the New York City (NYC) health department sought guidance from members of the public about the fairest approach to early-stage vaccine distribution. OBJECTIVE: To solicit recommendations from NYC residents on priorities regarding vaccine access for essential worker occupations, considering risk factors and preferred approaches to fairness. IMPLEMENTATION: Five public deliberations were conducted with NYC residents (N = 91). Participants heard presentations on the COVID-19 vaccine, the local distribution of illness and death, and approaches to fairness in the context of deliberating on priorities for 6 essential worker occupations and 4 risk factors. Discussions were transcribed, and transcriptions were coded and analyzed using preidentified and emergent themes. Pre- and post-surveys, focused on factors relevant to prioritization, were administered during each public deliberation. RESULTS: Recommendations for prioritization emphasized risk of severe morbidity and mortality, and work and neighborhood conditions with fewer protections (eg, in-person work, exposure to many people). Participants prioritized elementary schoolteachers, grocery store workers, and bus drivers, underlying health conditions, and neighborhood of residence. Participants focused on equity, recognizing that those at highest risk were largely low-income populations of color and individuals living in low-resourced neighborhoods. CONCLUSIONS: Participants' focus on equity, and acknowledgment of racial and ethnic disparities, revealed a nuanced understanding of the broader determinants of health. Recommendations reinforced the NYC health department's approach to vaccine distribution. PUBLIC HEALTH IMPLICATIONS: Results from these public deliberations confirmed community support for approaches prioritizing health equity, recognizing both societal and personal factors affecting vulnerability to poor health.

Community Priorities for Hospital-Based Prevention Initiatives: Results From a Deliberating Public.

CONTEXT: Internal revenue service provisions require not-for-profit hospitals to provide "community benefit." In addition, the Affordable Care Act requires these hospitals to conduct community health needs assessments that involve appropriate stakeholders. These requirements signal government interest in creating opportunities for developing programs that are well tailored and responsive to the needs of the communities served. Gaining meaningful input from residents is a critical aspect of these processes. OBJECTIVE: To implement public deliberations that explore local resident priorities for use of a hospital's community benefit resources to prevent chronic disease. METHODS: Public deliberation is a method of community engagement that can provide guidance to decision makers on value-laden issues when technical solutions alone are inadequate to provide direction or set priorities. Three deliberations featuring presentations by experts and discussions among participants were convened with a cross section of residents in Brooklyn, New York. Participants were asked whether new hospital initiatives should prioritize: clinical prevention, community-based interventions, or action on broader policies affecting population health. Pre- and postsurveys, as well as qualitative methods, were used to assess knowledge and attitudes. RESULTS: Postdeliberation, participants had significant changes in knowledge, particularly on the impact of education on health. Participants prioritized community-based and policy interventions over expanding clinical prevention capacity. CONCLUSIONS: Public deliberation offers a method to probe informed constituent views of how a hospital can best promote its community's health. Informed local residents felt that hospitals should frame health-promoting activities more broadly than is current practice. Not-for-profit hospitals gain significant tax advantages. Increased insurance rates suggest that some hospitals will experience savings in uncompensated care that can be used to promote health more broadly. Vetting priorities for the use of new resources with informed community members can be accomplished through public deliberation. These results suggest community support for nonclinical approaches to disease prevention.

Public Mistrust of the U.S. Health Care System's Profit Motives: Mixed-Methods Results from a Randomized Controlled Trial.

BACKGROUND: Decision makers are increasingly tasked with reducing health care costs, but the public may be mistrustful of these efforts. Public deliberation helps gather input on these types of issues by convening a group of diverse individuals to learn about and discuss values-based dilemmas. OBJECTIVE: To explore public perceptions of health care costs and how they intersect with medical mistrust. DESIGN AND PARTICIPANTS: This mixed-methods study analyzed data from a randomized controlled trial including four public deliberation groups (n = 96) and a control group (n = 348) comprising English-speaking adults aged 18 years and older. Data were collected in 2012 in four U.S. regions. APPROACH: We used data from four survey items to compare attitude shifts about costs among participants in deliberation groups to participants in the control group. We qualitatively analyzed deliberation transcripts to identify themes related to attitude shifts and to provide context for quantitative results about attitude shifts. KEY RESULTS: Deliberation participants were significantly more likely than control group participants to agree that doctors and patients should consider cost when making treatment decisions (ß = 0.59; p < 0.01) and that people should consider the effect on group premiums when making treatment decisions (ß = 0.48; p < 0.01). Qualitatively, participants mistrusted the health care system's profit motives (e.g., that systems prioritize making money over patient needs); however, after grappling with patient/doctor autonomy and learning about and examining their own views related to costs during the process of deliberation, they largely concluded that payers have the right to set some boundaries to curb costs. CONCLUSIONS: Individuals who are informed about costs may be receptive to boundaries that reduce societal health care costs, despite their mistrust of the health care system's profit motives, especially if decision makers communicate their rationale in a transparent manner. Future work should aim to develop transparent policies and practices that earn public trust.

Setting Boundaries: Public Views on Limiting Patient and Physician Autonomy in Health Care Decisions.

We obtained and qualitatively analyzed input from more than nine hundred citizens during seventy-six public deliberation sessions about patient and physician autonomy in decision making, setting health care boundaries, and the tensions among competing social values. Generally, participants resisted interference with the patient-physician relationship and believed strongly in the freedom of patient and physician to control individual medical decisions. However, during deliberation participants identified two situations where boundaries and regulations in health care were more acceptable: protecting people from harm and allocating limited resources. The core value of individual freedom was tempered in varying degrees by the values of concern for the greater good and fairness in allocating resources. Where tensions between values emerged, participants used different concepts-including accountability, transparency, trust, personal responsibility, and moral obligation-to navigate trade-offs. Fairly balancing the public's desire to protect individual freedom with their sense of responsibility for protecting the common good may be the key to developing acceptable, workable policies that promote evidence-based medical practice.

Understanding An Informed Public's Views On The Role Of Evidence In Making Health Care Decisions.

Policy makers and practitioners increasingly believe that medical evidence plays a critical role in improving care and health outcomes and lowering costs. However, public understanding of the role of evidence-based care may be different. Public deliberation is a process that convenes diverse citizens and has them learn about and consider ethical or values-based dilemmas and weigh alternative views. The Community Forum Deliberative Methods Demonstration project, sponsored by the Agency for Healthcare Research and Quality, obtained informed public views on the role of evidence in health care decisions through seventy-six deliberative groups involving 907 people overall, in the period August-November 2012. Although participants perceived evidence as being essential to high-quality care, they also believed that personal choice or clinical judgment could trump evidence. They viewed doctors as central figures in discussing evidence with patients and key arbiters of whether to follow evidence in individual cases. They found evidence of harm to individuals or the community to be more compelling than evidence of effectiveness. These findings indicate that increased public understanding of evidence can play an important role in advancing evidence-based care by helping create policies that better reflect the needs and values of the public.

Response to a patient activation intervention among Spanish-speaking patients at a community health center in New York City.

Patient activation describes an individual's readiness to participate in their health care. Lower levels of activation that may contribute to poor health outcomes have been documented in Latino patients. We administered a brief activating intervention directed at Spanish-speakers that sought to improve and encourage question-asking during a medical visit. We used quantitative measures of patient attitudes supplemented with open-ended questions to evaluate the effectiveness of the intervention at a community health center. Post-intervention changes in the Patient Activation Measure (PAM) and Decision Self-Efficacy (DSE) were measured. Both control and intervention group PAM scores changed significantly, but for those at lower levels of activation, only the intervention group showed significant gains. For the DSE the intervention group showed significant changes in scores. These findings, which are supported by the qualitative data, suggest that the intervention helped patients who may have difficulty asking questions during medical visits.

The impact of different modalities for activating patients in a community health center setting.

OBJECTIVE: Decision aids are designed to assist patients in understanding their health care choices but lower SES populations are less activated and may not be prepared to benefit. Activating interventions may help prepare patients for using decision aids. METHODS: We evaluated the impact of a decision aid video (DA) and the Patient Activation Intervention (PAI) on patient's level of activation measured by the Patient Activation Measure (PAM) and their decision-making confidence measured by the decision self-efficacy (DSE) scale. Patients were randomized into control, PAI alone, DA alone, and DA+PAI groups. RESULTS: PAM and DSE scores increased significantly in all groups with repeated measures. Restricting analyses to those with pre-intervention PAM scores at stages 1 or 2, the change in PAM scores was significant only for the intervention groups. The change in DSE scores was significantly only in the DA group. CONCLUSION: These findings provide support for the utility of the DA, the PAI, and the DA+PAI in activating lower SES individuals. The DA alone changed DSE scores in the least activated patients while the PAI and DA both changed PAM scores. PRACTICE IMPLICATIONS: Interventions directed at increasing patient engagement in their care may be useful particularly for less activated patients from lower SES populations.

Activating community health center patients in developing question-formulation skills: a qualitative study.

The authors developed and delivered a brief patient activation intervention (PAI) that sought to facilitate physician-patient communication. The intervention was designed to assist low-income, racial/ethnic minority users of community health centers in building skills and confidence asking questions. The PAI takes 8 to 10 minutes to deliver and consists of five steps that can be carried out by individuals with minimal formal medical training. A total of 252 patients waiting to see their physician participated in the intervention and completed the follow-up semistructured interview after their health care visit. The authors describe the intervention and the results of their qualitative evaluation of patient's responses. Overall, the PAI was valued by patients, appeared to add to patients' satisfaction with the health care they received, and was feasible to implement in the primary care setting. Furthermore, findings from this study provide indirect insight regarding factors that influence minority patient's question-asking behavior that include patient's attitudes, social factors, and patient's self-efficacy in question formulation.

Asking questions: the effect of a brief intervention in community health centers on patient activation.

OBJECTIVE: To evaluate the impact of a patient activation intervention (PAI) focused on building question formulation skills that was delivered to patients in community health centers prior to their physician visit. METHODS: Level of patient activation and patient preferred role were examined using the patient activation measure (PAM) and the patient preference for control (PPC) measure. RESULTS: More of the 252 patients evaluated were at lower levels of activation (PAM levels 1 or 2) than U.S. population norms before the intervention. Paired-samples t-test revealed a statistically significant increase from pre-intervention to post-visit PAM scores. One-third of participants moved from lower levels of activation to higher levels (PAM levels 3 or 4) post-intervention. Patients preferring a more passive role had lower initial PAM scores and greater increases in their post-intervention PAM scores than did those who preferred a more active role. CONCLUSION: Patients exposed to the PAI demonstrated significant improvement on a measure of activation. The PAI may be useful in helping patients prepare for more effective encounters with their physicians. PRACTICE IMPLICATIONS: The PAI was feasible to deliver in the health center setting and may be a useful method for activating low-income, racial/ethnic minority patient populations.

Levels and correlates of patient activation in health center settings: building strategies for improving health outcomes.

Patient activation refers to people's ability to engage in self-management of their health and health care. We assessed the performance of the Patient Activation Measure (PAM) for patients attending three inner-city health centers and compared resultant scores with those of the general U.S. adult population. We approached 801 patients and 527 (65.8%) participated; the majority were Latino(a) or African American/Black. No differences in activation were seen according to age. Males and more educated patients were more activated (p<.05) and patients with better self-rated health and adequate health literacy were more activated than their counterparts (p<.001). Patterns of scores resembled those of the U.S. general population for educational attainment and self-rated health but not for gender and age. Compared with the general population, more patients were characterized as level 1 (least activated). Developing strategies that enhance patient activation is critical to improving health outcomes, particularly in less advantaged populations.

Toward a 21st-century health care system: recommendations for health care reform.

The coverage, cost, and quality problems of the U.S. health care system are evident. Sustainable health care reform must go beyond financing expanded access to care to substantially changing the organization and delivery of care. The FRESH-Thinking Project (www.fresh-thinking.org) held a series of workshops during which physicians, health policy experts, health insurance executives, business leaders, hospital administrators, economists, and others who represent diverse perspectives came together. This group agreed that the following 8 recommendations are fundamental to successful reform: 1. Replace the current fee-for-service payment system with a payment system that encourages and rewards innovation in the efficient delivery of quality care. The new payment system should invest in the development of outcome measures to guide payment. 2. Establish a securely funded, independent agency to sponsor and evaluate research on the comparative effectiveness of drugs, devices, and other medical interventions. 3. Simplify and rationalize federal and state laws and regulations to facilitate organizational innovation, support care coordination, and streamline financial and administrative functions. 4. Develop a health information technology infrastructure with national standards of interoperability to promote data exchange. 5. Create a national health database with the participation of all payers, delivery systems, and others who own health care data. Agree on methods to make de-identified information from this database on clinical interventions, patient outcomes, and costs available to researchers. 6. Identify revenue sources, including a cap on the tax exclusion of employer-based health insurance, to subsidize health care coverage with the goal of insuring all Americans. 7. Create state or regional insurance exchanges to pool risk, so that Americans without access to employer-based or other group insurance could obtain a standard benefits package through these exchanges. Employers should also be allowed to participate in these exchanges for their employees' coverage. 8. Create a health coverage board with broad stakeholder representation to determine and periodically update the affordable standard benefit package available through state or regional insurance exchanges.

A strategic plan for integrating cost-effectiveness analysis into the US healthcare system.

The Panel on Integrating Cost-Effectiveness Considerations into Health Policy Decisions, composed of medical and pharmacy directors at public and private health plans, was convened to (1) explore the views of health plan purchasers about cost-effectiveness analysis (CEA) and (2) to develop a strategic plan for policymakers to address obstacles and to integrate CEA into health policy decisions, drawing on stakeholders as part of the solution. Panelists expressed strong support for a greater role for CEA in US health policy decisions, although they also highlighted barriers in the current system and challenges involved in moving forward. The strategic plan involves a series of activities to advance the use of CEA in the United States, including research and demonstration projects to illustrate potential gains from using the technique and ongoing consensus- building steps (eg, workshops, conferences, town meetings) involving a broad coalition of stakeholders. Funding and leadership from policymakers and nonprofit foundations will be needed, as well as the active engagement of legislators and business and consumer groups. Panelists emphasized the importance of the Medicare program taking a lead role, and the need for new "infrastructure," in the form of either a new institute for conducting research or increased funding for existing institutions.

Medicare and cost-effectiveness analysis: time to ask the taxpayers.

Maintaining Medicare's affordability for taxpayers and beneficiaries is becoming harder. Although cost containment strategies have been proposed, using cost-effectiveness analysis (CEA) to prioritize coverage decisions has not been among them. There is a widespread but largely untested perception that Americans are unwilling to accept limits in health care. We review existing evidence about the public's willingness to accept constraints and set health care priorities. We suggest that given the opportunity to weigh in on ethical and normative issues that surround CEA, members of the public are appropriate parties to engage in shaping Medicare's broadest resource allocation questions.

Relationship among sociodemographic factors, clinical conditions, and health-related quality of life: examining the EQ-5D in the U.S. general population.

INTRODUCTION: Health-related quality of life (HRQL) measures are used increasingly in evaluations of clinical and population-based outcomes and in economic analyses. We investigate the influence of demographic, socioeconomic, and chronic disease factors on the HRQL of a representative U.S. sample. METHODS: We examined data from 13,646 adults in the 2000 Medical Expenditure Panel Survey, a nationally representative sample of the U.S. general population, who completed a self-administered questionnaire containing the EQ-5D, a preference-based measure. We assessed the relationships between EQ-5D scores and sociodemographic variables, including age, sex, race/ethnicity, income and education, and six common chronic conditions. RESULTS: In fully adjusted models, EQ-5D scores decreased with increasing category of age and were lower for persons with a lower income and educational attainment as well as each of the six conditions. Although the EQ-5D scores were lower for females and Whites compared with Blacks such differences were not of a magnitude considered to be clinically important. CONCLUSIONS: In the U.S., sociodemographic factors and clinical conditions are strongly associated with scores on the EQ-5D. Population health studies and risk-adjustment models should account and adjust for these factors when assessing the performance of health programs and clinical care.

The income-associated burden of disease in the United States.

In this study, we estimate the total burden of disease associated with income in the US. We calculate the relationships between income and life expectancy, health-adjusted life expectancy, annual years of life lost (YLLs), and health adjusted life years (HALYs). We used the 2000 US Medical Expenditure Panel Survey to derive quality of life estimates by income and age, the 1990-1992 US National Health Interview Survey linked to National Death Index data through the end of 1995 to derive mortality risks by income and by age, and 2000 US mortality data from the National Center for Health Statistics to derive current mortality estimates for the US population by age-group. The bottom 80% of adult income earners' life expectancy is 4.3 years and 5.8 HALYs shorter relative to those in the top 20% of earnings. This translates into the loss of 11 million YLLs and 17.4 million HALYs each year. Compared with persons living above the poverty threshold, those living below the poverty threshold live an average of 3.2 million fewer HALYs per year-a difference of 8.5 HALYs per individual between age 18 and death. The income-associated burden of disease appears to be a leading cause of morbidity and mortality in the US.

Construct validity of the EQ-5D in low-income Chinese American primary care patients.

OBJECTIVES: Although the EQ-5D has been used with increasing frequency to measure health-related quality of life, to date, the measure's validity has not been examined in Chinese American immigrants. We evaluated the construct validity of the EQ-5D by testing its performance with respect to sociodemographic and clinical characteristics of the population and comparing responses on the EQ dimensions with the SF-36 subscales. METHODS: The study surveyed low-income Chinese patients attending a community health center in New York City's Chinatown. Participants received self-administered versions of the EQ-5D and SF-36 and additional questions regarding demographic and clinical information. RESULTS: 856 patients were approached and data were collected from 523 patients (61%). Analysis of the EQ-5D responses by sociodemographic and clinical variables found significant differences among categories of age, gender, marital status, number of medical problems, self-rated health, and specific medical problems. Correlations between similar dimensions and subscale scores were stronger between the two measures than dissimilar ones. Patients without impairments on a given EQ dimension tended to have higher SF-36 subscale scores than patients reporting 'any' impairment (i.e. some/moderate or severe). CONCLUSIONS: The results provide initial support for the construct validity of the EQ-5D in our sample. Further studies should compare the performance of the EQ-5D with other preference-based measures in Chinese persons and examine the valuations that both low-income and Chinese persons place on core aspects of health.