Stakeholder-driven principles for advancing equity through shared measurement.

OBJECTIVE: To advance equity by developing stakeholder-driven principles of shared measurement, which is using a common set of measurable goals that reflect shared priorities across communities and systems, such as health care, public health, and human and social services. DATA SOURCES: From October 2019 to July 2021, we collected primary data from leaders in cross-systems alignment, measurement, and community engagement-including community members and community-based organization leaders-across the United States. STUDY DESIGN: In partnership with equity and community engagement experts, we conducted a mixed-methods study that included multiple formative research activities and culminated in a six-week, stakeholder-engaged modified-Delphi process. DATA COLLECTION: Formative data collection occurred through an environmental scan, interviews, focus groups, and an online survey. Principles were developed using a virtual modified Delphi with iterative rapid-analysis. Feedback on the final principles was collected through virtual focus groups, an online feedback form, and during virtual presentations. PRINCIPAL FINDINGS: We developed a set of five guiding principles. Measurement that aligns systems with communities toward equitable outcomes: (1) Requires upfront investment in communities; (2) Is co-created by communities; (3) Creates accountability to communities for addressing root causes of inequities and repairing harm; (4) Focuses on a holistic and comprehensive view of communities that highlights assets and historical context; and (5) Reflects long-term efforts to build trust. Using an equity-focused process resulted in principles with broad applicability. CONCLUSIONS: Leaders across systems and communities can use these shared measurement principles to reimagine and transform how systems create equitable health by centering the needs and priorities of the communities they serve, particularly communities that historically have been harmed the most by inequities. Intentionally centering equity across all project activities was essential to producing principles that could guide others in advancing equity.

Lessons Learned from Developing Plain Language Summaries of Research Studies.

BACKGROUND: Plain language translation may facilitate the public's ability to understand and use results of scientific research. Brief description of activity: This article describes the Patient-Centered Outcomes Research Institute's (PCORI) approach to and lessons learned from developing plain language summaries of PCORI-funded research for the lay public. IMPLEMENTATION: We developed and tested a standard template for the summaries, incorporating feedback in the template design from focus groups with members of the public. Between February 2017 and March 2020, we completed translation of 272 plain language summaries of PCORI-funded studies, covering topics including cardiovascular disease, obesity, cancer, mental health, asthma, HIV/AIDS, and comparative effectiveness research methods. RESULTS: Templates use a question-and-answer format, with sections on the rationale, methods, results, limitations, and how the research will help inform decisions. In addition to feedback on template heading wording and order, focus group participants stressed the importance of establishing relevance and conveying credibility and limitations. LESSONS LEARNED: Lessons learned relate to supporting consistency across individual summaries, carefully prioritizing content to include in the summaries, and balancing plain language and reading level with precision. These lessons learned from template development and implementation may be useful to other organizations or publishers contemplating similar efforts to make scientific research results more accessible. [HLRP: Health Literacy Research and Practice. 2021;5(2):e155-e161.] Plain Language Summary: The Patient-Centered Outcomes Research Institute (PCORI) funds comparative effectiveness research. This research compares the benefits and harms of two or more health care choices. In this article, we describe lessons learned from PCORI's efforts to develop plain language summaries of results from the research it funds. These lessons may help other organizations that want to share research results in plain language.

Increasing the Use of Comparative Quality Information in Maternity Care: Results From a Randomized Controlled Trial.

This randomized controlled trial tested an intervention to increase uptake of hospital-level maternity care quality reports among 245 pregnant women in North Carolina (123 treatment; 122 control). The intervention included three enhancements to the quality report offered to the control: (a) biweekly text messages or e-mails directing women to the website, (b) videos and materials describing the relevance of quality measures to pregnant women's interests, and (c) tools to support discussions with clinicians. Compared with controls, intervention participants were significantly more likely to visit the website and report adopting behaviors to inform care, such as thinking through preferences, talking with their doctor, or creating a birth plan. Reports designed to put quality information into the larger context of what consumers want and need to know, along with targeted and timely communications, can increase consumer use of quality information and prompt them to talk with providers about care preferences and evidence-based practices.

Understanding Consumer Perceptions and Awareness of Hospital-Based Maternity Care Quality Measures.

OBJECTIVE: To explore factors that may influence use of comparative public reports for hospital maternity care. DATA SOURCES: Four focus groups conducted in 2013 with 41 women and preintervention survey data collected in 2014 to 2015 from 245 pregnant women in North Carolina. STUDY DESIGN: As part of a larger randomized controlled trial, we conducted qualitative formative research to develop an intervention that will be evaluated through pre- and postintervention surveys. DATA EXTRACTION METHODS: Analysis of focus group transcripts examined participants' perceptions of high-quality maternity care and the importance of different quality measures. Quantitative analysis included descriptive results of the preintervention survey and subgroup analyses to examine the impact of race, education, and being a first-time mom on outcomes. PRINCIPAL FINDINGS: When describing high-quality maternity care, participants focused on interactions with providers, including respect for preferences and communication. The importance of quality measures was influenced by the extent to which they focused on babies' health, were perceived as the hospital's responsibility, and were perceived as representing "standard care." At baseline, 28 percent of survey respondents had used quality information to choose a hospital. Survey respondents were more aware of some quality measures (e.g., breastfeeding support) than others (e.g., episiotomy rates). CONCLUSIONS: Public reporting efforts could help increase relevance of maternity care quality measures by creating measures that reflect women's concerns, clearly explaining the hospital's role in supporting quality care, and showing how available quality measures can inform decisions about childbirth.

An experiment shows that a well-designed report on costs and quality can help consumers choose high-value health care.

Advocates of health reform continue to pursue policies and tools that will make information about comparative costs and resource use available to consumers. Reformers expect that consumers will use the data to choose high-value providers-those who offer higher quality and lower prices-and thus contribute to the broader goal of controlling national health care spending. However, communicating this information effectively is more challenging than it might first appear. For example, consumers are more interested in the quality of health care than in its cost, and many perceive a low-cost provider to be substandard. In this study of 1,421 employees, we examined how different presentations of information affect the likelihood that consumers will make high-value choices. We found that a substantial minority of the respondents shied away from low-cost providers, and even consumers who pay a larger share of their health care costs themselves were likely to equate high cost with high quality. At the same time, we found that presenting cost data alongside easy-to-interpret quality information and highlighting high-value options improved the likelihood that consumers would choose those options. Reporting strategies that follow such a format will help consumers understand that a doctor who provides higher-quality care than other doctors does not necessarily cost more.

Building Academic Geriatric Nursing Capacity: results after the first 10 years and implications for the future.

In 2000, the John A. Hartford Foundation launched a multi-million dollar investment in Building Academic Geriatric Nursing Capacity (BAGNC) at the American Academy of Nursing (AAN). After a decade of focused support to increase scholarship, research, leadership, and institutional collaboration, is there evidence this program is successful in achieving its goals? Equally important, as the need for quality geriatric nursing care increases with the expanding aging population and associated complex health conditions, how does the experience and outcomes of this program inform nursing's future? To address both questions, the authors first provide an overview of geriatric nursing prior to and up to the time the BAGNC program began, then review results of an external evaluation of the BAGNC program, and finally propose goals and strategies for the next 20 years of academic geriatric nursing.

Addressing the need for public reporting of comparative hospice quality: a focus group study.

BACKGROUND: Standardized measures are available to assess hospice quality across multiple domains, but no information on hospice quality is available to the public. A study was conducted in 2006 to explore the public's knowledge, beliefs, and attitudes about hospice care and their responses to the idea of a public report on comparative hospice quality. METHODS: Six focus groups were conducted, two with individuals with direct hospice care experience and four with people without experience. Focus groups were videotaped, transcribed, and analyzed for themes and patterns of convergence and divergence. RESULTS: Focus group participants without hospice experience knew of hospice but had little accurate information about hospices services, who could benefit, or how it is financed. Even some with hospice experience were unaware of services such as bereavement support. Participants saw hospice as appropriate only when the family could no longer provide care. They wanted a public report to include information about hospice, help in comparing hospice to other kinds of end-of-life care, details on accreditation, staff and services of individual hospices, quality comparisons, and decision support. Hospice was viewed as providing a broad range of services to the family as well as the patient. DISCUSSION: This research will provide guidance for the development of an evidence-based model report on hospice quality that includes substantial educational material. It also supports the selection of measures for such a report that would resonate with the public, which makes the use of a comparative quality report more likely. The next step in this research is to develop and formatively test such a report, so that it can be pilot tested with willing hospices in a community offering a choice of providers. Considerable additional work is needed to ensure that hospice becomes more understandable and transparent to the public.

Patient perceptions of the quality of health services.

As calls are made for a more patient-centered health care system, it becomes critical to define and measure patient perceptions of health care quality and to understand more fully what drives those perceptions. This chapter identifies conceptual and methodological issues that make this task difficult, including the confusion between patient perceptions and patient satisfaction and the difficulty of determining whether systematic variations in patient perceptions should be attributed to differences in expectations or actual experiences. We propose a conceptual model to help unravel these knotty issues; review qualitative studies that report directly from patients on how they define quality; provide an overview of how health plans, hospitals, physicians, and health care in general are currently viewed by patients; assess whether and how patient health status and demographic characteristics relate to perceptions of health care quality; and identify where further, or more appropriately designed, research is needed. Our aim is to find out what patients want, need and experience in health care, not what professionals (however well-motivated) believe they need or get.