Advancing Health Policy and Outcomes for People With Intellectual or Developmental Disabilities: A Community-Led Agenda.

Importance: At least 10 million people in the United States have an intellectual and/or developmental disability (IDD). People with IDD experience considerably higher rates of poor overall health, chronic conditions including diabetes, mental health challenges, maternal mortality, and preventable deaths. This Special Communication proposes national goals based on a community-led consensus model that advances priority health outcomes for people with IDD and their caregivers/partners and identifies critical policy opportunities and challenges in achieving these goals. A community-led consensus agenda offers a foundation for focusing research, improving data collection and quality measurement, enhancing coverage and payment for services, and investing in a prepared clinical workforce and infrastructure in ways that align with lived experiences and perspectives of community members. Observations: People with IDD prioritize holistic health outcomes and tailored supports and services, driven by personalized health goals, which shift over their life course. Caregivers/partners need support for their own well-being, and easy access to resources to optimize how they support loved ones with IDD. Development of an adequately prepared clinical workforce to serve people with IDD requires national and regional policy changes that incentivize and structure training and continuing education. Ensuring effective and high-value coverage, payment, and clinical decisions requires investments in new data repositories and data-sharing infrastructure, shared learning across public and private payers, and development of new technologies and tools to empower people with IDD to actively participate in their own health care. Conclusions and Relevance: Consensus health priorities identified in this project and centered on IDD community members' perspectives are generalizable to many other patient populations. Public and private payers and regulators setting standards for health information technology have an opportunity to promote clinical data collection that focuses on individuals' needs, quality measurement that emphasizes person-centered goals rather than primarily clinical guidelines, and direct involvement of community members in the design of payment policies. Clinical education leaders, accrediting bodies, and investors/entrepreneurs have an opportunity to innovate a better prepared health care workforce and shared data infrastructure to support value-based care programs.

Achieving the Quadruple Aim Through Bidirectional Care.

This chapter discusses the notion of 'bidirectional health literacy' between the patient/care partner and the care team, and its impact on the quadruple aim: the care experience, population health, engagement, and the cost of care. It provides a brief historical perspective of the quadruple aim along with its relationships to value and health literacy. It overviews the responsibilities of health care organizations and highlights best practices, such as bidirectional care opportunities in patient-centered medical homes, with a focus on improving provider and care team communication. The chapter's aim is to provide a new bidirectional perspective on health literacy. It illuminates for readers that the focus of health literacy should not just be about patients' understanding of and engagement in their own health and health care, but instead, a partnership where care teams become equally 'literate' about the patient/care partner, by learning what they value, the contextual and social determinants that impact their ability to engage in self-care, and by demonstrating cultural humility in all of their care efforts. Various models that support bidirectional literacy and care are provided.

Listening to the autistic voice: Mental health priorities to guide research and practice in autism from a stakeholder-driven project.

LAY ABSTRACT: Autistic adults commonly experience mental health conditions. However, research rarely involves autistic adults in deciding priorities for research on mental healthcare approaches that might work for them. The purpose of this article is to describe a stakeholder-driven project that involved autistic adults in co-leading and designing research about priorities to address mental health needs. Through a large online survey, two large meetings, and three face-to-face focus group discussions involving over 350 stakeholders, we identified five priorities for mental health research desired by autistic adults. These priorities and preferred outcomes should be used to guide research and practice for autistic adults.

Interventions to address health outcomes among autistic adults: A systematic review.

LAY ABSTRACT: Autistic adults have more health problems then their same-aged peers. Yet little research has been conducted that focuses on addressing these health problems. In order to guide future research, it is important to know what intervention studies have been done to improve health outcomes among autistic adults. The project team and student assistants read studies that were published between 2007 and 2018 in the online research database, PubMed. We looked for studies published in English, which were peer-reviewed and included (1) an intervention, (2) an outcome that was related to health, and (3) a study group that included autistic adults. We did not include studies that had outcomes about employment (unless there was a health outcome), studies about caregivers or caregiving, or expert opinions about interventions. Of 778 reviewed articles, 19 studies met all of the criteria above. Within these studies, two approaches were found to have emerging evidence for their use in autistic adults: cognitive behavioral interventions and mindfulness-based approaches for improved mental health outcomes. The remaining intervention approaches did not have enough articles to support their use. Many of the outcomes were about reduced symptoms of co-occurring mental health diagnoses (e.g. reduced anxiety, depression). Most of the participants in these studies were male and did not have intellectual disability. Most study participants were adults younger than 40. There are not many intervention studies that address health outcomes among autistic adults. More research is needed on interventions which are desired by the adult autism community and address preferred health outcomes such as increased quality of life or well-being.

Decreasing the Peril of Antimicrobial Resistance Through Enhanced Health Literacy in Outpatient Settings: An Underrecognized Approach to Advance Antimicrobial Stewardship.

Globally, antimicrobial resistance (AMR) is a serious problem causing 700,000 deaths annually. By 2050, AMR is expected to cause approximately 10 million deaths globally each year if allowed to increase at the present rate. Many individuals have limited knowledge regarding appropriate antibiotic use and AMR. Most antibiotic use occurs in the outpatient setting, with approximately 30% of antibiotics prescribed deemed unnecessary. Antimicrobial stewardship (AMS) is a means to reduce inappropriate antibiotic use and AMR. While existing AMS efforts generally focus on the inpatient setting, a significant gap is present in the outpatient setting. A common theme across various national action plans to reduce AMR is the need for education and awareness. The importance of communicating information in a manner easily comprehended by the patient in addition to productive clinician-patient dialogue cannot be overestimated. Enhancing the public's and patients' AMS health literacy is an underrecognized approach to help address AMR. We describe Four Core Elements of Enhancing AMS Health Literacy in the Outpatient Setting, utilizing the Centers for Disease Control and Prevention's framework: (1) leadership commitment, (2) intervention/action, (3) tracking/reporting, and (4) education/expertise. We call upon leaders in outpatient settings to embrace this approach to curb inappropriate antimicrobial use.

A New Charter on Professionalism and Health Care Organizations.

Nurses should embrace and share this ethical framework.

The Charter on Professionalism for Health Care Organizations.

In 2002, the Physician Charter on Medical Professionalism was published to provide physicians with guidance for decision making in a rapidly changing environment. Feedback from physicians indicated that they were unable to fully live up to the principles in the 2002 charter partly because of their employing or affiliated health care organizations. A multistakeholder group has developed a Charter on Professionalism for Health Care Organizations, which may provide more guidance than charters for individual disciplines, given the current structure of health care delivery systems.This article contains the Charter on Professionalism for Health Care Organizations, as well as the process and rationale for its development. For hospitals and hospital systems to effectively care for patients, maintain a healthy workforce, and improve the health of populations, they must attend to the four domains addressed by the Charter: patient partnerships, organizational culture, community partnerships, and operations and business practices. Impacting the social determinants of health will require collaboration among health care organizations, government, and communities.Transitioning to the model hospital described by the Charter will challenge historical roles and assumptions of both its leadership and staff. While the Charter is aspirational, it also outlines specific institutional behaviors that will benefit both patients and workers. Lastly, this article considers obstacles to implementing the Charter and explores avenues to facilitate its dissemination.