Testing the validity and reliability of the Person-Centered Contraceptive Counseling (PCCC) Performance Measure in a Real-World Contraceptive Access Program.

OBJECTIVES: To validate the Person-Centered Contraceptive Counseling (PCCC) patient-reported outcome performance measure and assess for differences by sociodemographic attributes using survey data from a multistate contraceptive access program. STUDY DESIGN: This analysis explored internal reliability and construct validity of the PCCC using survey data from 1413 patients who visited 15 health centers in Washington state and Massachusetts that had partnered with Upstream USA. RESULTS: Multiple psychometric indicators provided evidence of reliability and validity. Significant associations between the highest PCCC rating and conceptually-related survey questions (i.e., experience with bias/coercion and shared decision-making) provided further evidence of construct validity. CONCLUSIONS: Our findings demonstrate that the PCCC is valid and reliable. The results also highlight differences in experience of care by patient-reported race and ethnicity, income level, and language.

A real-world comparison of in-person vs. virtual contraceptive care trainings for clinicians and support staff.

OBJECTIVES: To conduct an exploratory analysis comparing in-person vs. virtual training programs about contraceptive care among clinicians and staff at 14 healthcare agencies in Washington state. METHODS: Survey data from in-person trainings were collected between July 2019 and March 2020 and from virtual trainings between June 2020 and January 2021. PRIMARY OUTCOMES: changes in contraceptive knowledge, understanding of contraceptive counseling and care, and participant engagement and experience with the training. RESULTS: Post-survey response rates for in-person trainings were 82% for clinicians and 72% for support staff while post-survey response rates for virtual trainings were 48% for clinicians and 43% for staff. Average knowledge scores for in-person clinician trainings increased from 63% prior to training to 80% post-training (p < 0.05), knowledge scores for virtual clinician trainings increased from 72% to 86% (p < 0.05), and the pre-to-post change in scores between training modalities was similar (p > 0.05 for the score difference). Average knowledge scores among in-person support staff trainings increased from 63% to 84% (p < 0.05), scores among virtual support staff trainings increased from 68% to 87% (p < 0.05) and, again, the pre-to-post change in scores between training modalities was similar (p > 0.05 for the score difference). Only minimal differences in survey scores between modalities were observed on most measures of participant engagement and experience with the trainings (p > 0.05 for most score differences). CONCLUSIONS: These exploratory results suggest that in-person and virtual contraceptive care trainings yielded comparable results among both clinicians and support staff. IMPLICATIONS: Results from this post-hoc analysis of survey data suggest a general equivalency of effectiveness between in-person trainings and virtual trainings, although in-person trainings may be more satisfying or engaging for participants. Further work and research is needed to inform strategies for making virtual trainings more engaging and satisfying for participants.

Implementation Research to Strengthen Health Care Financing Reforms Toward Universal Health Coverage in Indonesia: A Mixed-Methods Approach to Real-World Monitoring.

Universal health coverage reforms are complex and impact numerous processes, institutions, and individuals. To know whether reforms are being implemented as planned and working as envisioned, policy makers and managers need information and insights on bottlenecks. The United States Agency for International Development (USAID) provided support to build implementation research (IR) capacity and to conduct cycles of research to help Indonesia understand how its single-payer national insurance reform, Jaminan Kesehatan Nasional (JKN), was affecting primary care. Two cycles of IR in Indonesia focused on effects of JKN financing on primary care, as determined through a consultative process with stakeholders at national and district levels. This process generated questions relevant for implementers and policy makers and strengthened government interest in findings. Research was conducted in 5 diverse districts, and methods included key informant interviews, focus groups, document review, health worker surveys, and analysis of service delivery data. Cycle 1 findings showed an uneven understanding of JKN regulations, unequal implementation readiness, and limited evidence of improved productivity. JKN capitation payments did not increase health worker satisfaction or motivate additional effort. Informed by these findings, regulations were rewritten and the capitation payment formula was redesigned to include payment conditional on performance. Cycle 2 found that health workers experienced increased workloads because of increased enrollment in JKN and the requirement that people access primary care before being referred to higher levels of care. In addition, health workers indicated they did not experience the payment system to be fair. Instead of payment being conditional on performance, they indicated it was primarily determined by education and tenure, with only some districts incorporating a small payment component based on behaviors, such as attendance, and performance. The health workers said they preferred to be paid based on achieving primary care targets. Conducting IR so that questions are relevant and the process of finding and sharing answers is timely and cost-effective requires high-level skills, but support to build IR capacity has potential to make a lasting impact.

Workforce Configurations to Provide High-Quality, Comprehensive Primary Care: a Mixed-Method Exploration of Staffing for Four Types of Primary Care Practices.

BACKGROUND: Broad consensus exists about the value and principles of primary care; however, little is known about the workforce configurations required to deliver it. OBJECTIVE: The aim of this study was to explore the team configurations and associated costs required to deliver high-quality, comprehensive primary care. METHODS: We used a mixed-method and consensus-building process to develop staffing models based on data from 73 exemplary practices, findings from 8 site visits, and input from an expert panel. We first defined high-quality, comprehensive primary care and explicated the specific functions needed to deliver it. We translated the functions into full-time-equivalent staffing requirements for a practice serving a panel of 10,000 adults and then revised the models to reflect the divergent needs of practices serving older adults, patients with higher social needs, and a rural community. Finally, we estimated the labor and overhead costs associated with each model. RESULTS: A primary care practice needs a mix of 37 team members, including 8 primary care providers (PCPs), at a cost of $45 per patient per month (PPPM), to provide comprehensive primary care to a panel of 10,000 actively managed adults. A practice requires a team of 52 staff (including 12 PCPs) at $64 PPPM to care for a panel of 10,000 adults with a high proportion of older patients, and 50 staff (with 10 PCPs) at $56 PPPM for a panel of 10,000 with high social needs. In rural areas, a practice needs 22 team members (with 4 PCPs) at $46 PPPM to serve a panel of 5000 adults. CONCLUSIONS: Our estimates provide health care decision-makers with needed guideposts for considering primary care staffing and financing and inform broader discussions on primary care innovations and the necessary resources to provide high-quality, comprehensive primary care in the USA.

How Do Innovative Primary Care Practices Achieve the Quadruple Aim?

The Patient-Centered Medical Home (PCMH) now defines excellent primary care. Recent literature has begun to elucidate the components of PCMHs that improve care and reduce costs, but there is little empiric evidence that helps practices, payers, or policy makers understand how high-performing practices have improved outcomes. We report the findings from 38 such practices that fill this gap. We describe how they execute 8 functions that collectively meet patient needs. They include managing populations, providing self-management support coaching, providing integrated behavioral health care, and managing referrals. The functions provide a more actionable perspective on the work of primary care.

Facilitative Components of Collaborative Learning: A Review of Nine Health Research Networks.

OBJECTIVE: Collaborative research networks are increasingly used as an effective mechanism for accelerating knowledge transfer into policy and practice. This paper explored the characteristics and collaborative learning approaches of nine health research networks. DATA SOURCES/STUDY SETTING: Semi-structured interviews with representatives from eight diverse US health services research networks conducted between November 2012 and January 2013 and program evaluation data from a ninth. STUDY DESIGN: The qualitative analysis assessed each network's purpose, duration, funding sources, governance structure, methods used to foster collaboration, and barriers and facilitators to collaborative learning. DATA COLLECTION: The authors reviewed detailed notes from the interviews to distill salient themes. PRINCIPAL FINDINGS: Face-to-face meetings, intentional facilitation and communication, shared vision, trust among members and willingness to work together were key facilitators of collaborative learning. Competing priorities for members, limited funding and lack of long-term support and geographic dispersion were the main barriers to coordination and collaboration across research network members. CONCLUSION: The findings illustrate the importance of collaborative learning in research networks and the challenges to evaluating the success of research network functionality. Conducting readiness assessments and developing process and outcome evaluation metrics will advance the design and show the impact of collaborative research networks.

Enrolling African-American and Latino patients with asthma in comparative effectiveness research: Lessons learned from 8 patient-centered studies.

BACKGROUND: African-American and Latino patients are often difficult to recruit for asthma studies. This challenge is a barrier to improving asthma care and outcomes for these populations. OBJECTIVES: We sought to examine the recruitment experiences of 8 asthma comparative effectiveness studies that specifically targeted African-American and Latino patients, and identify the solutions they developed to improve recruitment. METHODS: Case report methodology was used to gather and evaluate information on study design, recruitment procedures and outcomes from study protocols and annual reports, and in-depth interviews with each research team. Data were analyzed for themes, commonalities, and differences. RESULTS: There were 4 domains of recruitment challenges: individual participant, institutional, research team, and study intervention. Participants had competing demands for time and some did not believe they had asthma. Institutional challenges included organizational policies governing monetary incentives and staff hiring. Research team challenges included ongoing training needs of recruitment staff, and intervention designs often were unappealing to participants because of inconveniences. Teams identified a host of strategies to address these challenges, most importantly engagement of patients and other stakeholders in study design and troubleshooting, and flexibility in data collection and intervention application to meet the varied needs of patients. CONCLUSIONS: Asthma researchers may have greater success with recruitment by addressing uncertainty among patients about asthma diagnosis, engaging stakeholders in all aspects of study design and implementation, and maximizing flexibility of study and intervention protocols. However, even with such efforts, engagement of African-American and Latino patients in asthma research may remain low. Greater investment in research on engaging these populations in asthma research may ultimately be needed to improve their asthma care and outcomes.

Transitions to Care in the Community for Prison Releasees with HIV: a Qualitative Study of Facilitators and Challenges in Two States.

One in seven people living with HIV in the USA passes through a prison or jail each year, and almost all will return to the community. Discharge planning and transitional programs are critical but challenging elements in ensuring continuity of care, maintaining treatment outcomes achieved in prison, and preventing further viral transmission. This paper describes facilitators and challenges of in-prison care, transitional interventions, and access to and continuity of care in the community in Rhode Island and North Carolina based on qualitative data gathered as part of the mixed-methods Link Into Care Study of prisoners and releasees with HIV. We conducted 65 interviews with correctional and community-based providers and administrators and analyzed the transcripts using NVivo 10 to identify major themes. Facilitators of effective transitional systems in both states included the following: health providers affiliated with academic institutions or other entities independent of the corrections department; organizational philosophy emphasizing a patient-centered, personal, and holistic approach; strong leadership with effective "champions"; a team approach with coordination, collaboration and integration throughout the system, mutual respect and learning between corrections and health providers, staff dedicated to transitional services, and effective communication and information sharing among providers; comprehensive transitional activities and services including HIV, mental health and substance use services in prisons, timely and comprehensive discharge planning with specific linkages/appointments, supplies of medications on release, access to benefits and entitlements, case management and proactive follow-up on missed appointments; and releasees' commitment to transitional plans. These elements were generally present in both study states but their absence, which also sometimes occurred, represent ongoing challenges to success. The qualitative findings on the facilitators and challenges of the transitional systems were similar in the two states despite differences in context, demographics of target population, and system organization. Recommendations for improved transitional systems follow from the analysis of the facilitators and challenges.

The Agency for Healthcare Research and Quality Multiple Chronic Conditions Research Network: overview of research contributions and future priorities.

BACKGROUND: By 2030, 171 million Americans are expected to have more than one chronic condition. The cohort of individuals with multiple chronic conditions (MCC) is growing and two thirds of healthcare costs for the US population are currently spent on the 20% of people who have MCC. OBJECTIVES: Recognizing the need for increased investment in MCC programs and research, Health and Human Services (HHS) developed the HHS Strategic Framework on MCC. The Agency for Healthcare Research and Quality (AHRQ) contributed to the goals of the framework by funding the MCC Research Network, comprising 45 diverse grants and representing one of the largest federal investment in MCC studies to date. RESULTS: The initial body of research emerging from the AHRQ MCC Research Network included: co-management of commonly co-occurring conditions (including by caregivers); care for patients with low-prevalence combinations of MCC; the effect of MCC patients on provider performance metrics; guidelines for preventive services; medication management in individuals with MCC; as well as MCC-specific methodological and analytical techniques. CONCLUSIONS: The authors describe a subset of research contributions made in each topic area and make 3 recommendations for future MCC research: (1) include person-centered and person-driven measures and outcomes, (2) consider the person in the context of their relationships and community, and (3) include mental healthcare as an essential part of overall healthcare.

A conceptual model of the role of complexity in the care of patients with multiple chronic conditions.

BACKGROUND: Effective healthcare for people with multiple chronic conditions (MCC) is a US priority, but the inherent complexity makes both research and delivery of care particularly challenging. As part of AHRQ Multiple Chronic Conditions Research Network (MCCRN) efforts, the Network developed a conceptual model to guide research in this area. OBJECTIVE: To synthesize methodological and topical issues relevant to MCC patient care into a framework that can improve the delivery of care and advance future research about caring for patients with MCC. METHODS: The Network synthesized essential constructs for MCC research identified from roundtable discussion, input from expert advisors, and previously published models. RESULTS: The AHRQ MCCRN conceptual model defines complexity as the gap between patient needs and healthcare services, taking into account both the multiple considerations that affect the needs of MCC patients, as well as the contextual factors that influence service delivery. The model reframes processes and outcomes to include not only clinical care quality and experience, but also patient health, well being, and quality of life. The single-condition paradigm for treating needs one-by-one falls apart and highlights the need for care systems to address dynamic patient needs. CONCLUSIONS: Defining complexity in terms of the misalignment between patient needs and services offers new insights in how to research and develop solutions to patient care needs.

A pilot registry of unexplained fatiguing illnesses and chronic fatigue syndrome.

BACKGROUND: Chronic fatigue syndrome (CFS) has no diagnostic clinical signs or biomarkers, so diagnosis requires ruling out conditions with similar signs and symptoms. We conducted a pilot registry of unexplained fatiguing illnesses and CFS to determine the feasibility of establishing and operating a registry and implementing an education outreach initiative. The pilot registry was conducted in Bibb County, Georgia. Patient referrals were obtained from healthcare providers who were identified by using various education outreach initiatives. These referrals were later supplemented with self-referrals by members of a local CFS support group. All patients meeting referral criteria were invited to participate in a screening interview to determine eligibility. If patients met registry criteria, they were invited to a one-day clinic for physical and laboratory evaluations. We classified patients based on the 1994 case definition. RESULTS: We registered 827 healthcare providers. Forty-two providers referred 88 patients, and 58 patients (66%) completed clinical evaluation. Of the 188 CFS support group members, 53 were self-referred and 46 (87%) completed the clinical evaluation. Of the 104 participants completing evaluation, 36% (n = 37) met the criteria for CFS, 17% (n = 18) had insufficient fatigue or symptoms (ISF), and 47% (n = 49) were found to have exclusionary medical or psychiatric illnesses. Classification varied significantly by type of referral but not by previous history of CFS diagnosis. Healthcare providers referred more patients who were classified as CFS as compared to support group referrals in which more exclusionary conditions were identified. Family practice and internal medicine specialties made the most referrals and had the highest number of CFS cases. We conducted three CME events, held three "Meet and Greet" sessions, visited four large clinical health practices and health departments, mailed five registry newsletters, and conducted in-person office visits as part of education outreach, which contributed to patient referrals. CONCLUSIONS: Referrals from healthcare providers and self-referrals from the patient support group were important to registry enrollment. The number of potentially treatable conditions that were identified highlights the need for continued medical management in this population, as well as the limitations of registries formed without clinical examination. Education initiatives were successful in part because of partnerships with local organizations.

Public perspectives on informed consent for biobanking.

The National Institutes of Health and other federal health agencies are considering establishing a national biobank to study the roles of genes and environment in health. We assessed the public's attitudes toward the proposed biobank, including preferences for providing informed consent. Sixteen focus groups were conducted, and themes arising from the focus groups were tested in a large, representative survey (n=4659) of the general population. Our research demonstrates that when considering participating in a genomic biobank, individuals want ongoing choices and control over access to their samples and information.

Public expectations for return of results from large-cohort genetic research.

The National Institutes of Health and other federal health agencies are considering establishing a national biobank to study the roles of genes and environment in human health. A preliminary public engagement study was conducted to assess public attitudes and concerns about the proposed biobank, including the expectations for return of individual research results. A total of 141 adults of different ages, incomes, genders, ethnicities, and races participated in 16 focus groups in six locations across the country. Focus group participants voiced a strong desire to be able to access individual research results. Recognizing the wide range of possible research results from a large cohort study, they repeatedly and spontaneously suggested that cohort study participants be given ongoing choices as to which results they received.

Ethical implications of including children in a large biobank for genetic-epidemiologic research: a qualitative study of public opinion.

The National Institutes of Health and other federal agencies are considering initiating a cohort study of 500,000 people, including 120,000 children, to measure genetic and environmental influences on common diseases. A community engagement pilot study was conducted to identify public attitudes and concerns about the proposed cohort study, including the ethics of involving children. The pilot included 15 focus groups where the inclusion of children in the proposed cohort study was discussed. Focus groups, conducted in six cities, included 141 adults of different ages, incomes, genders, ethnicities, and races. Many of the concerns expressed by participants mirrored those addressed in pediatric research guidelines. These concerns included minimizing children's fear, pain, and burdens; whether to include young children; and how to obtain children's assent. There was little agreement about which children can assent. Some voiced concern about children's privacy, but most expected that parents would have access to children's study results. Some believed children would not benefit from participating, while others identified personal and societal benefits that might accrue. A few people believed that children's participation would not advance the study's goals. To successfully include children, proposed cohort study would need to address children's changing capabilities and rights as they grow and reach the age of consent.

Opinions about new reproductive genetic technologies: hopes and fears for our genetic future.

OBJECTIVE: To identify underlying beliefs and values shaping Americans' opinions about the appropriate use of new reproductive genetic technologies (RGTs), including preimplantation genetic diagnosis, hypothetical genetic modification, and sperm sorting for sex selection. DESIGN: Scenarios with ethical dilemmas presented to 21 focus groups organized by sex, race/ethnicity, religion, age, education, and parental status. SETTING: A city in each state: California, Colorado, Massachusetts, Michigan, and Tennessee. PARTICIPANT(S): One hundred and eighty-one paid volunteers, ages 18 to 68. INTERVENTION(S): None. MAIN OUTCOME MEASURE(S): Beliefs and values that shape participants' opinions about the appropriate use of new RGTs. RESULT(S): Regardless of demographic characteristics, focus group participants considered six key factors when determining the appropriateness of using RGTs: [1] whether embryos would be destroyed; [2] the nature of the disease or trait being avoided or sought; [3] technological control over "natural" reproduction; [4] the value of suffering, disability, and difference; [5] the importance of having genetically related children; and [6] the kind of future people desire or fear. CONCLUSION(S): Public opinions about the appropriate use of RGTs are shaped by numerous complementary and conflicting values beyond classic abortion arguments. Clinicians and policy-makers have the opportunity to consider these opinions when creating messages and crafting policy.

Empowering organizations: approaches to tobacco control through youth empowerment programs.

Whereas most evaluations of youth empowerment focus on individual outcomes (i.e., were individual youths empowered?), this article focuses on the program as the unit of analysis and seeks to explain how organizational structures, program design features, and processes lead to organizational empowerment (OE). OE is defined as organizational efforts that generate psychological empowerment among members and organizational effectiveness needed for goal achievement. Case studies of five American Legacy Foundation-funded tobacco control youth empowerment programs were conducted during the first 2 years of implementation. Using an OE framework, the authors assessed program design features of the youth empowerment programs that contributed to or detracted from processes leading to OE. Comparing and contrasting the programs led to the identification of models and strategies that contribute to OE. Ecological influences of the state contexts (i.e., political climate, history of tobacco control, and public health infrastructure) were also examined.