What some physicians say about caring for patients with disability: Responses to open-ended question to nationwide physician survey.

BACKGROUND: For over 50 years, federal disability civil rights laws have mandated that patients with disability receive equitable health care. However, disabled patients continue to experience health care disparities. OBJECTIVE: To explore physicians' views, in their own words, about caring for patients with disability. METHODS: Review of responses to open-ended question at the end of a nationally representative survey of 714 outpatient physicians about their experiences caring for adult disabled patients. The open-ended question asked for additional comments participants wanted to share. Only 108 (15.1 %) survey participants provided responses suitable for analysis (e.g., legible, complete thought). All issues reported here reflect comments from ≥5 participants. RESULTS: Common concerns involved high costs, too little time, insufficient space, inadequate training, and lack of adequate mental health services to care for disabled patients. Many physicians appeared frustrated by legal requirements that they cover accommodation costs. Multiple physicians described as "unfair" having to pay for sign language interpreters, especially since interpreter costs generally exceed reimbursements for patients' visits. Physicians also commented on high costs and space demands of accessible exam tables, especially for small practices, and on challenges accommodating patients with severe obesity, including concerns that patients with severe obesity could damage their exam tables. Some participants suggested that disabled patients require advocates to get good quality care. CONCLUSIONS: Albeit limited by the small number of responses, these open-ended comments from our nationwide survey of physicians suggest some doctors view certain accessibility requirements as unfair to them or infeasible in their practice environments.

Impairment and Disability Identity and Perceptions of Trust, Respect, and Fairness.

Importance: Most studies use impaired functioning alone to specify populations with disabilities. However, some people with functional impairments do not identify as disabled. With functional status-based definitions, studies have shown disparate care quality for people with disabilities. Objective: To examine whether impairment and disability identity have different associations with perceived health care experiences and explore factors associated with disability identification. Design, Setting, and Participants: This cross-sectional study used a nationally representative survey of US adults conducted from April 20 through May 31, 2021, and analyzed between June 1 and August 31, 2022. Survey participants were 1822 English- or Spanish-speaking adults responding either online or via telephone. Exposures: Using 8 survey questions, participants were grouped according to presence of impairment and disability identity. Main Outcomes and Measures: Likert scale measures of trust, respect, and fairness (henceforth, procedural justice measures) were dichotomized. Sociodemographic characteristics and rates of procedural justice responses were compared across groups. Multivariable logistic regressions adjusting for baseline characteristics were performed to (1) estimate associations of impairment and disability identity with perceptions of procedural justice and (2) explore factors associated with disability identification. Analyses applied survey weights. Results: Of 6126 individuals invited to participate, 1854 (30.3%) completed the survey. Thirty-two were excluded due to unreportable gender, for a final analytic sample of 1822 participants. Participants with impairments (n = 816; mean [SD] age, 48.1 [17.0] years; 51.2% women, 48.8% men) had worse perceptions on 7 of 10 procedural justice measures (crude) compared with those without impairments (n = 1006; mean [SD] age, 49.6 [18.1] years, 55.1% female, 44.9% male). Among respondents with impairments, those who did (n = 340) vs did not (n = 476) identify as disabled gave better ratings for clinician communication efforts (a lot of effort, 38.8% vs 31.0%) and having health goals understood (understood very or fairly well, 77.2% vs 70.1%) but gave worse ratings for respect (almost never felt inferior or talked down to, 66.1% vs 59.1%). Disability identification was associated with more reports of unfair treatment (31.0% vs 22.4%; adjusted odds ratio, 1.65; 95% CI, 1.12-2.42) and of being unafraid to ask questions or disagree (50.5% vs 40.1%; adjusted odds ratio, 1.51; 95% CI, 1.04-20.19). Income and employment were associated with disability identification. Conclusions and Relevance: In this cross-sectional survey study of US adults, health care perceptions differed between groups defined by impairment status and disability identity. These findings suggest that, alongside functional measures, health systems should capture disability identity to better address disparities for people with impairments.

Have Almost Fifty Years Of Disability Civil Rights Laws Achieved Equitable Care?

For almost fifty years, federal civil rights laws such as Section 504 of the Rehabilitation Act of 1973, the Americans with Disabilities Act (ADA) of 1990 and the ADA Amendments Act of 2008, and Section 1557 and other provisions of the 2010 Patient Protection and Affordable Care Act have prohibited discrimination against Americans with disabilities, including in health care. Despite these laws, disabled Americans continue to experience disparities in health and health care, from preventive care to home and community-based services. In its 2022 Health Equity Framework for People with Disabilities, the National Council on Disability highlighted some of these disparities and recommended remedies. To explore these concerns, this article examines disability inequities and potential solutions within six areas. It concludes by recommending the ratification of the 2006 United Nations Convention on the Rights of Persons with Disabilities to reinvigorate US efforts to maximize the health and dignity of disabled Americans and support their full participation in the community.

'I Am Not The Doctor For You': Physicians' Attitudes About Caring For People With Disabilities.

People with disabilities face barriers when attempting to gain access to health care settings. Using qualitative analysis of three physician focus groups, we identified physical, communication, knowledge, structural, and attitudinal barriers to care for people with disabilities. Physicians reported feeling overwhelmed by the demands of practicing medicine in general and the requirements of the Americans with Disabilities Act of 1990 specifically; in particular, they felt that they were inadequately reimbursed for accommodations. Some physicians reported that because of these concerns, they attempted to discharge people with disabilities from their practices. Increasing health care access for people with disabilities will require increasing the accessibility of space and the availability of proper equipment, improving the education of clinicians about the care of people with disabilities, and removing structural barriers in the health care delivery system. Our findings also suggest that physicians' bias and general reluctance to care for people with disabilities play a role in perpetuating the health care disparities they experience.

Patient perceptions of in-home urgent care via mobile integrated health.

OBJECTIVES: Emergency department (ED) crowding poses a severe public health threat, and identifying acceptable means of treating medical conditions in alternative sites of care is imperative. We compared patients' experiences with in-home urgent care via mobile integrated health (MIH) vs urgent care provided in EDs. STUDY DESIGN: Survey, completed on paper, online, or by telephone. We surveyed all patients who received MIH care for an urgent health problem (n = 443) and consecutive patients who visited EDs for urgent care (n = 1436). METHODS: Study participants were members of a managed care plan who were dually eligible for Medicare and Medicaid, 21 years or older, and treated either by MIH or in an ED for nonemergent conditions around Boston, Massachusetts, between February 2017 and June 2018. The survey assessed patients' perceptions of their urgent care experiences. RESULTS: A total of 206 patients treated by community paramedics and 718 patients treated in EDs completed surveys (estimated 66% and 62% response rates, respectively). Patients treated by MIH perceived higher-quality care, more frequently reporting "excellent" (54.7%) or "very good" (32.4%) care compared with ED patients (40.7% and 24.3%, respectively; P < .0001), and were significantly more likely to report that decisions made about their care were "definitely right" compared with patients treated in the ED (66.1% vs 55.6%; P = .02). CONCLUSIONS: Patients appear satisfied with receiving paramedic-delivered urgent care in their homes rather than EDs, perceiving higher-quality care. This suggests that in-home urgent care via MIH may be acceptable for patients with nonemergent conditions.

US Physicians' Knowledge About The Americans With Disabilities Act And Accommodation Of Patients With Disability.

More than thirty years since the enactment of the Americans with Disabilities Act (ADA), people with disability continue to experience health care disparities. The ADA mandates that patients with disability receive reasonable accommodations. In our survey of 714 US physicians in outpatient practices, 35.8 percent reported knowing little or nothing about their legal responsibilities under the ADA, 71.2 percent answered incorrectly about who determines reasonable accommodations, 20.5 percent did not correctly identify who pays for these accommodations, and 68.4 felt that they were at risk for ADA lawsuits. Physicians who felt that lack of formal education or training was a moderate or large barrier to caring for patients with disability were more likely to report little or no knowledge of their responsibilities under the law and were more likely to believe that they were at risk for an ADA lawsuit. To achieve equitable care and social justice for patients with disability, considerable improvements are needed to educate physicians and make health care delivery systems more accessible and accommodating.

Incidence of Accommodations for Patients With Significant Vision Limitations in Physicians' Offices in the US.

IMPORTANCE: Despite documented disparities in health care for patients with significant vision impairments and legal mandates that patients with disability receive equitable care, little is known about the extent to which physicians practicing in the US accommodate these patients in outpatient clinical settings. OBJECTIVE: To empirically explore the extent of basic accommodations physicians practicing in the US provide to patients with significant vision limitations in outpatient care. DESIGN, SETTING, AND PARTICIPANTS: In this physician survey study, randomly selected physicians were surveyed throughout the US on their attitudes toward patients with disability. A total of 1400 randomly selected active board-certified physicians representing 7 specialties (family medicine, general internal medicine, rheumatology, neurology, ophthalmology, orthopedic surgery, and obstetrics-gynecology) were surveyed. Data were collected from October 2019 to June 2020. MAIN OUTCOMES AND MEASURES: Reported use of basic accommodations when caring for patients with significant vision limitations (defined here as blind or significant difficulty seeing even with glasses or other corrective lenses). Physicians' accommodation performance was assessed based on whether they always or usually described the clinic space and always or usually provided printed material in large font. Use of Braille materials was reported too rarely to include in analyses. RESULTS: Of the 462 survey participants, 297 of 457 (65.0%) were male. The weighted response rate was 61.0%. Only 48 physicians (9.1%; 95% CI, 6.6-12.3) provided both accommodations (always or usually describing clinic spaces and providing large-font materials), while 267 (60.2%; 95% CI, 55.3-65.0) provided neither of these accommodations. Although 62.8% (95% CI, 57.5-67.8; n = 245) of nonophthalmologists did not provide either accommodation, 29.3% (95% CI, 20.1-40.7; n = 22) of ophthalmologists also did not do so; only 24.0% (95% CI, 15.6-35.0; n = 18) of ophthalmologists provided both accommodations compared with 8.4% (95% CI, 5.4-12.7) of other physicians. CONCLUSIONS AND RELEVANCE: This survey study suggests that less than one-tenth of physicians practicing in the US who care for patients with significant vision limitations usually or always describe clinic spaces or provide large-font materials, and less than one-third of ophthalmologists do so. Actions to address this seem warranted.

Physicians' Perceptions Of People With Disability And Their Health Care.

More than sixty-one million Americans have disabilities, and increasing evidence documents that they experience health care disparities. Although many factors likely contribute to these disparities, one little-studied but potential cause involves physicians' perceptions of people with disability. In our survey of 714 practicing US physicians nationwide, 82.4 percent reported that people with significant disability have worse quality of life than nondisabled people. Only 40.7 percent of physicians were very confident about their ability to provide the same quality of care to patients with disability, just 56.5 percent strongly agreed that they welcomed patients with disability into their practices, and 18.1 percent strongly agreed that the health care system often treats these patients unfairly. More than thirty years after the Americans with Disabilities Act of 1990 was enacted, these findings about physicians' perceptions of this population raise questions about ensuring equitable care to people with disability. Potentially biased views among physicians could contribute to persistent health care disparities affecting people with disability.

Associations Between Disability and Breast or Cervical Cancers, Accounting for Screening Disparities.

INTRODUCTION: Studies suggest that women with disability experience disparities in routine, high-value screening services, including mammograms and Papanicolaou (Pap) tests. However, few studies have explored whether women with disability have higher risks than other women of developing breast or cervical cancers. METHODS: The authors analyzed 2010, 2013, 2015, and 2018 National Health Interview Surveys, which involved civilian, noninstitutionalized US residents, and included supplemental surveys on cancer screening. The authors used self-reported functional status limitations to identify women without disability and women with movement difficulties (MDs) or complex activity limitations (CAL) predating breast or cervical cancer diagnoses. Multivariable models evaluated associations of disability status to cancer diagnosis, adjusting for other variables. Analyses used sampling weights, producing national estimates. RESULTS: The sample included 66,641 women; 24.4% reported MD and 14.5% reported CAL. Compared with women without disability, women with pre-existing MD or CAL had significantly higher rates of breast cancer (2.2% vs. 3.5% and 3.6%, respectively) and cervical cancer (0.6% vs. 0.8% and 1.0%, respectively). Women with disability had significantly lower recent mammography and Pap test rates than women without disability. After adjusting for all covariates, the values for odds ratio (95% confidence interval) of pre-existing CAL for cancer diagnoses were 1.21 (1.01-1.46; P=0.04) for breast cancer and 1.43 (1.04-1.99; P=0.03) for cervical cancer. CONCLUSIONS: Pre-existing disability is associated with a higher likelihood of breast and cervical cancer diagnoses, raising the urgency of eliminating disability disparities in mammography and Pap testing. Further research will need to explore the causes of these higher cancer rates.

Beyond Technical Standards: A Competency-Based Framework for Access and Inclusion in Medical Education.

Efforts to include people with disability as students and practitioners in the health professions have gained momentum in recent years. However, prevailing technical standards at U.S. medical schools have biases that can prevent or impede their admission, promotion, and graduation. These standards derive from an approach first promulgated in 1979 and have since remained largely unaltered. Current technical standards at most medical schools are now at odds with changes occurring since the 1990 enactment of broad civil rights protections for people with disability and current aspirations for diversity, equity, and inclusion in the medical profession. It is time to replace the technical standards construct with an approach more consistent with current medical practices, and with societal imperatives of equity and social justice. Such an approach should assess candidates' demonstrable skills and merits, rather than relying on a preconceived construct identifying the presence or absence of defined levels of ability. The maturation of competency-based approaches to curricular design and assessment provides an opportunity to reconceptualize the abilities required to practice medicine, foster the appropriate inclusion of physicians with disability, and better align medical education and training with broader societal needs and goals.

Care Plans, Care Teams, and Quality of Life for People with Disabilities.

BACKGROUND: Massachusetts One Care was the first program approved among the Centers for Medicare & Medicaid Financial Alignment Demonstrations for dually eligible beneficiaries. The only program focusing on dually eligible beneficiaries ages 21-64, One Care espouses an independent living philosophy for persons with disabilities. Researchers engaged with enrollees to develop new measures of enrollee quality of life and health to understand changes experienced in this new model of care. OBJECTIVE: To examine whether enrollee knowledge of care plans and care teams predicts improvements in enrollee reported quality of life outcomes. DESIGN AND PARTICIPANTS: We engaged with people with disabilities to develop and implement a longitudinal survey in One Care in Massachusetts. This analysis presents the self-reported outcomes of a panel of 315 enrollees' experiences with key plan features in Massachusetts One Care enrollees. MAIN MEASURES: Knowledge of care plan, care team, and long-term services and supports (predictors); overall health, improved control, improved quality of health care, and improved hope for the future (outcomes). KEY RESULTS: Enrollee-reported knowledge of a care plan and a care team over 2 years of enrollment in Massachusetts One Care was associated with increased odds of reporting more control over health (OR 2.58, CI 1.33, 5.03), improved health care quality (OR 3, CI 1.27, 7.06), and overall health (OR 2.07, CI 1.05, 4.08). Access to new services or equipment to live independently was associated with increased odds of reporting all four positive outcomes, notably for improved perceptions of hope (OR 2.33, CI 1.56, 5.39), overall health (OR 5.03, CI 2.44, 10.39), and improved quality of care (OR 4.22, CI 1.85, 9.62). CONCLUSION: Engagement of persons with disabilities in care teams and care planning, as well as quality measurement, can improve their experiences of quality of life and health care.

Views of Electronic Visit Verification (EVV) among home-based personal assistance services consumers and workers.

BACKGROUND: The 21st Century Cures Act, enacted in 2016, mandates that Medicaid programs must implement Electronic Visit Verification (EVV) for home-based personal assistance services (PAS) and home health care (HHC) by January 2020. EVV involves real-time tracking of arrival and departure times, locations, and sometimes activities of PAS and HHC workers for home-based consumers. OBJECTIVE: We examined the views and perceptions of consumers with disability and paid PAS workers about EVV. METHODS: Our qualitative study consisted of in-depth interviews with 21 home-based PAS consumers with significant disability and 20 PAS workers. Thirteen consumers and 10 workers commented on EVV. We audio-recorded interviews and had these recordings transcribed verbatim by a professional transcription service. We used conventional content analysis to identify key themes from the interviews. RESULTS: Qualitative interviews suggest that EVV is intrusive, reduces flexibility from the consumer-worker relationship, has technical difficulties, but may help certain consumers. Our results suggest that EVV interferes with the standard way PAS is provided and raises fears about EVV negatively affecting recruitment and retention of PAS workers. CONCLUSIONS: Policymakers should consider these perspectives and concerns as states implement EVV. Policymakers will need to monitor the effects of EVV on both PAS consumers and workers over time to ensure that EVV is not negatively affecting provision of these essential services.

Ensuring the Reproductive Rights of Women with Intellectual Disability.

BACKGROUND: Women with intellectual disability experience disparities in sexual and reproductive health care services. METHODS: To explore perceptions of caring for persons with disability, including individuals with intellectual disability, we conducted open-ended individual interviews with 20 practicing physicians and three video-based focus group interviews with an additional 22 practicing physicians, which reached data saturation. Interviews were transcribed verbatim. We used conventional content analysis methods to analyse transcripts. RESULT: Physicians indicated that intellectual disability can pose challenges to providing sexual and reproductive health care. Observations coalesced around four themes: (1) communication; (2) routine preventive care; (3) contraception and sterilization; and (4) conception and parenthood. Observations raised concerns about equity of access to reproductive care for women with intellectual disability. CONCLUSIONS: In our sample of physicians, we found attitudes that might compromise reproductive care for women with intellectual disability, suggesting that gaps remain in ensuring reproductive rights of women with intellectual disability.

Historical Mismatch Between Home-Based Care Policies And Laws Governing Home Care Workers.

Americans generally want to remain in their homes even if they develop chronic health problems or disabilities that qualify them for nursing home care. While family members or friends provide the preponderance of home-based support, millions of Americans use paid personal assistance services (PAS). Inexorable demographic trends are increasing the numbers of people who need paid home-based PAS, with this need rapidly outstripping the capacity of the paid PAS workforce. While many factors contribute to this widening discrepancy, its roots reach back more than eighty years to asynchrony among various policies affecting home-based supports for people with functional impairments and policies affecting home-based PAS workers. Finding solutions to the growing gap between demand for the services and the PAS workforce requires policies that cut across societal sectors and align incentives for consumers, workers, and other key stakeholders.

Using claims for long-term services and support to predict mortality and hospital use.

BACKGROUND: Despite limitations in their clinical content, claims data from administering health plans can provide important insights about service use and outcomes across large populations. However, using claims data to investigate care and outcomes among persons with disability is challenging because standard diagnosis, procedure, and medication codes provide little information about functional impairments or disability. OBJECTIVE: To explore whether supportive services claims provide useful information for predicting health care outcomes among persons with chronic disease and disability. METHODS: We used administrative data from a nonprofit, Massachusetts health plan, including members who were 21 years of age and older and dually-eligible for Medicare and Medicaid. With procedure codes, we identified long-term services and supports and ventilator and percutaneous endoscopic gastrostomy supplies. Data from calendar year 2015 were used to predict deaths and hospitalizations in 2016. Hazards ratio analyses predicted these outcomes adjusting for age, sex, disease burden, and amount of personal assistance and homemaker services used (proxy functional status measure). RESULTS: In bivariate analyses, all four predictors were statistically significant for both outcomes. In the full model, the proxy functional status measure did not statistically significantly predict hospitalization or death. After eliminating disease burden from the model, the proxy functional status measure became statistically significant, with hazards ratios of 1.006 for hospitalization (p = 0.0011) and 1.014 (p = <0.0001) for death. CONCLUSIONS: Claims for supportive services could be proxies for disability in analyses using administrative data, but additional research must demonstrate their usefulness for predicting health care outcomes.

Knowledge Of Practicing Physicians About Their Legal Obligations When Caring For Patients With Disability.

Disability civil rights laws require equitable treatment of the approximately sixty-one million Americans with disability. However, federal reports and numerous research studies indicate that this diverse and growing population often experiences health care disparities. To examine one possible contributing factor, we interviewed practicing physicians to explore their knowledge of their obligations to accommodate patients with disability under federal civil rights law. Interviewees reported having had little formal training about, and demonstrated superficial or incorrect understanding of, their obligations in three potentially problematic areas: deciding which accommodations their practices should implement, refusing patients with disability, and holding patients accountable for costs of accommodations. The fact that practicing physicians might not fully understand their legal responsibilities when caring for people with disability may contribute to persisting inequity in their care, and it suggests that further education in the Americans with Disabilities Act and other disability civil rights laws may be warranted.

Use and cost of disease-modifying therapies by Sonya Slifka Study participants: has anything really changed since 2000 and 2009?

BACKGROUND: Disease-modifying therapies benefit individuals with relapsing forms of multiple sclerosis, but their utility remains unclear for those without relapses. OBJECTIVE: To determine disease-modifying therapy use and costs in 2009, compare use in 2009 and 2000, and examine compliance with evidence-based guidelines. METHODS: We determined the extent and characteristics of disease-modifying therapy use by participants in the Sonya Slifka Longitudinal Multiple Sclerosis Study (Slifka) in 2000 (n=2156) and 2009 (n=2361) and estimated out-of-pocket and total (payer) costs for 2009. Two multivariable logistic regressions predicted disease-modifying therapy use. RESULTS: Disease-modifying therapy use increased from 55.3% in 2000 to 61.5% in 2009. In 2009, disease-modifying therapy use was reported by 76.5% of participants with relapsing-remitting multiple sclerosis, 73.2% with progressive-relapsing multiple sclerosis, 62.5% with secondary progressive multiple sclerosis, and 41.8% with primary progressive multiple sclerosis. Use was significantly associated with relapsing-remitting multiple sclerosis, shorter duration of illness, one to two relapses per year, non-ambulatory symptoms, using a cane, younger age, higher family income, and having health insurance. Average annual costs in 2009 were US$939-3101 for patients and US$16,302-18,928 for payers. CONCLUSION: Use rates were highest for individuals with relapsing-remitting multiple sclerosis, but substantial for those with progressive courses although clinical trials have not demonstrated significant benefits for them.

Exploring issues relating to disability cultural competence among practicing physicians.

BACKGROUND: Many factors contribute to the well-recognized health care disparities experienced by persons with disability, including failure of physicians to understand the lives of individuals with disability. Disability cultural competence considers physicians' ability to meet the social, cultural, and linguistic needs of this population. OBJECTIVES: To assess physicians' understanding of disability cultural competence and attitudes towards patients with disability. METHODS: Qualitative analyses of open-ended individual interviews averaging 41 min with 20 Massachusetts physicians from 5 different subspecialties, in practice for 8-51 years. Interview recordings were transcribed verbatim for conventional content analysis. RESULTS: Most participants defined disability using medically-focused concepts rather than concepts that recognize how social factors contribute to disability. All participants used disability culturally-competent language, such as "person-first language," at some points throughout their interviews. However, most participants also employed language that is now considered unacceptable or archaic, such as variations on the word "handicap," "wheelchair-bound," describing persons with disability as "suffering," and calling persons by their health condition (e.g., "COPDer"). Participants mentioned persons with mental illness and intellectual disability as particularly challenging, especially around communication and performing even routine tests or examinations. Recommendations for improving care included better listening to patients with disability and seeking their views about their care. CONCLUSIONS: In this exploratory study, most participants used language that is considered disability culturally competent at times but also employed many terms and concepts that are considered outdated and may be troubling to some persons with disability.

Early experiences with the Acute Community Care Program in eastern Massachusetts.

OBJECTIVES: Emergency departments (EDs) frequently provide care for nonemergent health conditions outside of usual physician office hours. A nonprofit, fully integrated health insurer/care delivery system that enrolls socioeconomically disadvantaged adults with complex health needs partnered with an ambulance service provider to offer after-hours urgent care by specially trained and equipped paramedics in patients' residences. The Massachusetts Department of Public Health gave this initiative, the Acute Community Care Program (ACCP), a Special Project Waiver. We report results from its first 2 years of operation. STUDY DESIGN: This was an observational study. METHODS: We used descriptive methods to analyze administrative claims, financial and enrollment records from the health insurer, information from service logs submitted by ACCP paramedics, and self-reported patient perceptions from telephone surveys of ACCP recipients. RESULTS: ACCP averaged only about 1 call per day in its first year, growing to about 2 visits daily in year 2. About 15% to 20% of ACCP patients ultimately were transported to EDs and between 7.2% and 17.1% were hospitalized within 1 day of their ACCP visits. No unexpected deaths occurred within 72 hours of ACCP visits. Paramedics stayed on scene approximately 80 minutes on average. About 70% of patients thought that ACCP spared them an ED visit; 90% or more were willing to receive future ACCP care. Average costs per ACCP visit fell from $844 in year 1 to $537 in year 2 as volumes increased. CONCLUSIONS: This study using observational data provides preliminary evidence suggesting that ACCP might offer an alternative to EDs for after-hours urgent care. More rigorous evaluation is required to assess ACCP's effectiveness.

Health plan enrollees with disability informing primary care practices and providers about their quality of care: A randomized trial.

BACKGROUND: In October 2013, Massachusetts initiated the One Care demonstration, which enrolls beneficiaries ages 21 to 64 dually-eligible for Medicare and Medicaid. Local disability advocates argued that persons with disability should assess their own One Care quality. OBJECTIVES: To test the comparative effectiveness for improving patient-reported health care experiences of two informational interventions in a 12-month period: (1) "YESHealth: Your Experience, Speak up for better health care," in which disability advocates developed brief topical surveys and gathered information from One Care enrollees with significant physical disability or serious mental illness; and (2) the Persons with Disability Quality Survey (PDQ-S), developed collaboratively with persons with disability. METHODS: This cluster randomized controlled trial randomly assigned 27 primary care practices with ≥50 One Care members to three study arms differing by information provided to practice directors and primary care providers (PCPs): (1) quarterly YESHealth reports plus results from baseline administration of PDQ-S to 720 enrollees before YESHealth implementation; (2) PDQ-S results only; and (3) no study information. We administered PDQ-S again one year later and used difference-in-differences analyses of results across the two years to assess intervention outcomes. RESULTS: Disability advocates conducting YESHealth reported substantial difficulties contacting practices and engaging PCPs. With few exceptions, no differences were found across the three study arms in enrollee-reported outcomes. CONCLUSIONS: Providing consumer-designed and generated quality information to PCPs had no measurable effect on enrollees' perceptions of One Care quality. Barriers to PCPs engaging with disability advocates could have contributed to YESHealth's failure to improve care.