"I Am Interested!": The Voices of the Community and Their Participation in Health Advisory Boards.

Introduction: Researchers can often be challenged by meaningful efforts to involve the public and communities in research. Community and health advisory boards (HABs) offer an opportunity to create a fully intentional and honest relationship between researchers and the community. Objective: Most recently, the All Indiana (IN) for Health HAB had four openings and a call was published to our community of over 13,800 individuals in the All IN for Health newsletter. Four hundred eighty-eight individuals submitted applications to become part of the board. In what follows, we share the lessons in motivations and interests of individuals who responded. Methods: The application process included the following questions: What lived experiences and/or personal interests have motivated you to be involved in All IN for Health? Please explain why you are interested in being an All IN for HAB member. Our analysis approach was qualitative and centered on narrative research. Results: We organize the findings in two categories: Motivation and Interests. Individuals were motivated to participate based on family or friend diagnosis, personal diagnosis, roles as caregivers, desire to impact change and advocacy, role as health professional, and previous participation in research. Interests followed similar themes beginning with crediting their interest to a diagnosis. In addition, we categorized desire to share their experience, personal positionality, and previous research experience, and contributing to the education of student/trainee. Conclusion: By understanding motivations, we understand needs. This information can be used for other advisory boards, as well as recruitment into research participation and health care advocacy.

Collecting Biospecimens and Obtaining Biobank Consent From Patients in an Academic Health Care Setting: Practical and Ethical Considerations.

Academic health centers and health systems increasingly ask patients to enroll in research biobanks as part of standard care, raising important practical and ethical questions for integrating biobank consent processes into health care settings. This article aims to assist academic health centers and health systems considering implementing these integrated consent processes by outlining the 5 main issues-and the key practical and ethical considerations for each issue-that Indiana University Health and the Indiana Biobank faced when integrating biobank consent into their health system, as well as the key obstacles encountered. The 5 main issues to consider include the specimen to collect (leftover, new collection, or add-ons to clinical tests), whether to use opt-in or opt-out consent, where to approach patients, how to effectively use digital tools for consent, and how to appropriately simplify consent information.

Prevalence of Asymptomatic SARS-CoV-2 Infection in Children and Adults in Marion County, Indiana.

BACKGROUND AND OBJECTIVES: Two community studies outside the US showed asymptomatic infection with severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) in adults, but not in children <10 years of age. In this study, we assessed the prevalence of asymptomatic SARS-CoV-2 infection in children and adults in Marion County, Indiana. METHODS: Individuals living in Marion County with no symptoms of coronavirus 2019 disease (COVID-19) within seven days of enrollment were eligible for this cross-sectional household study. Study kits were delivered to the participant's residence for self-swabbing, picked up by the study team, and tested by polymerase chain reaction (PCR) for SAR-CoV-2 infection. RESULTS: Five hundred eleven nasal swabs were collected from 119 children and 392 adults ≥18 years of age. One participant (seven years of age) tested positive, for an overall study prevalence of 0.2% (95% CI 0, 0.6%). The participant had no known contact with a person with SARS-CoV-2 infection, and five family members tested negative for infection. The child and family members all tested negative for infection 10 and 20 days after the first test, and none developed symptoms of COVID-19 for 20 days after testing. CONCLUSIONS: Asymptomatic SARS-CoV-2 infection can occur in children <10 years with no known COVID-19 exposure. Large cohort studies should be conducted to determine prevalence of asymptomatic infection and risk of transmission from asymptomatic infection in children and adults over time.

CTSA recruitment resources: An inventory of what CTSA hubs are currently offering.

INTRODUCTION: In order to tackle the challenge of efficiently meeting clinical research accrual goals, many Clinical and Translational Science Award (CTSA) recipients have developed recruitment support mechanisms and resources to help investigators successfully recruit study participants. Disseminating recruitment best practices and developing collaborations between institutions can help strengthen recruitment capabilities and methodologies currently utilized by researchers. METHODS: To discover what recruitment resources and mechanisms CTSAs are using, the CTSA Recruitment and Retention working group developed an electronic survey, which was distributed to CTSAs between May and July 2019. The survey contained over 50 multiple choice and short answer questions, with 40 of the 64 CTSA institutions completing the survey. Institutions reported on registries, feasibility assessment tools, clinical trial listings, experience recruiting special populations, program operations and evaluation, workforce education, social media use, and other recruitment resources. RESULTS: All respondents currently utilize some form of a volunteer registry; over 80% of the CTSAs provide investigators with recruitment consultations, feasibility assessments, study listings, and electronic health record (EHR) utilization; 73% assist with study materials; 47% offer social media assistance. Many institutions reported success in recruiting patients and healthy volunteers, but difficulty in recruiting special populations such as non-English-speaking persons and rural populations. Additional recruitment tools included use of the EHR to facilitate recruitment, use of registries, and use of social media to engage participants. CONCLUSIONS: Areas of opportunity or growth include the development of innovative solutions in the areas of social media advertising, identification of participants from special populations, and research volunteer engagement.

Field test results of a new ambulatory care Medication Error and Adverse Drug Event Reporting System--MEADERS.

PURPOSE: In this study, we developed and field tested the Medication Error and Adverse Drug Event Reporting System (MEADERS)-an easy-to-use, Web-based reporting system designed for busy office practices. METHODS: We conducted a 10-week field test of MEADERS in which 220 physicians and office staff from 24 practices reported medication errors and adverse drug events they observed during usual clinical care. The main outcomes were (1) use and acceptability of MEADERS measured with a postreporting survey and interviews with office managers and lead physicians, and (2) distributions of characteristics of the medication event reports. RESULTS: A total of 507 anonymous event reports were submitted. The mean reporting time was 4.3 minutes. Of these reports, 357 (70%) included medication errors only, 138 (27%) involved adverse drug events only, and 12 (2.4%) included both. Medication errors were roughly equally divided among ordering medications, implementing prescription orders, errors by patients receiving the medications, and documentation errors. The most frequent contributors to the medication errors and adverse drug events were communication problems (41%) and knowledge deficits (22%). Eight (1.6%) of the reported events led to hospitalization. Reporting raised staff and physician awareness of the kinds of errors that occur in office medication management; however, 36% agreed or strongly agreed that the event reporting "has increased the fear of repercussion in the practice." Time pressure was the main barrier to reporting. CONCLUSIONS: It is feasible for primary care clinicians and office staff to report medication errors and adverse drug events to a Web-based reporting system. Time pressures and a punitive culture are barriers to event reporting that must be overcome. Further testing of MEADERS as a quality improvement tool is warranted.

Peer knowledge and roles in supporting access to care and treatment.

People living with HIV (PLWHIV) have been involved in the continuum of HIV care since the early days of the epidemic providing education and prevention services. There is a growing interest in utilizing HIV positive peers to support access to care and treatment, but little is known about the range of roles these peers perform and what they need to know to do this work. This study of 186 HIV-positive peers currently providing community health services in eight states found that peers perform a wide range of roles, including assistance with care and treatment, emotional support, and service referrals. Over 80% discussed medications with clients. On average, experienced peers provided correct responses to 73% of questions about HIV and AIDS, and 65% of questions about the appropriate role of a peer. Peers living with HIV for more than 5 years, in paid employment with more than a high school education had higher HIV knowledge scores than volunteers. Higher education, length of time living with HIV, age and speaking English as the primary language were associated with higher peer knowledge scores. This study suggests that we cannot assume that peers already working in the field are fully knowledgeable about HIV care and treatment or peer roles. It is important to address gaps in knowledge through continuing education and to create common standards for the training and skills that peers who work in community health settings need to have.

A national survey of primary care practice-based research networks.

PURPOSE: Increasing numbers of primary care practice-based research networks (PBRNs) are being developed in the United States to perform research relevant to everyday practice. To assess the current status and potential value of this resource, we surveyed US primary care PBRNs in operation from late 2003 to early 2004. METHODS: We performed a Web-based survey and structured interviews with PBRN directors and administrative officers, assessing PBRNs' history, size, location, organization, resources, operations, and productivity (funding obtained, studies performed, and articles published). RESULTS: Of 111 primary care PBRNs identified, 89 (80%) responded to the survey. The 86 (77%) meeting the criteria for primary care PBRNs contained 1,871 practices, 12,957 physicians (mean 152 per PBRN, median 100), and 14.7 million patients (mean 229,880 per PBRN, median 105,000). Minority and underinsured patients were overrepresented. The average PBRN was young (4.4 +/- 5.7 years): one-half had performed 3 or fewer studies. Three-quarters were affiliated with universities. Common research foci included prevention, diabetes, cardiovascular risk factors, and mental health. Respondent PBRNs had published more than 600 articles in peer-reviewed journals. PBRNs studying questions posed by outside researchers had more federal funding (84% vs 27%, P=.006). PBRNs citing funding as a weakness relied more on local resources to fund research projects (70% vs 40%, P=.036). CONCLUSIONS: American primary care PBRNs are mainly young, diverse, and pursuing a variety of research foci. Most have university links and provide a dynamic town-gown relationship that could be a vital national resource for improving primary care, translating research into practice, and meeting the National Institutes of Health Roadmap goals. PBRNs merit further attention from both private and public funding agencies and researchers interested in studying the delivery of primary care.

Experiences with and attitudes toward death and dying among homeless persons.

BACKGROUND: Homeless persons face many barriers to health care, have few resources, and experience high death rates. They live lives of disenfranchisement and neglect. Few studies have explored their experiences and attitudes toward death and dying. Unfortunately, studies done in other populations may not apply to homeless persons. Exploring these experiences and attitudes may provide insight into life, health care, and end-of-life (EOL) concerns of this population. OBJECTIVE: To explore the experiences and attitudes toward death and dying among homeless persons. DESIGN: Qualitative study utilizing focus groups. PARTICIPANTS: Fifty-three homeless persons recruited from homeless service agencies. MEASUREMENTS: In-depth interviews, which were audiotaped and transcribed. RESULTS: We present seven themes, some of which are previously unreported. Homeless persons described many significant experiences with death and dying, and many participants suffered losses while very young. These encounters influenced participants' attitudes toward risks and risky behavior: e.g., for some, these experiences provided justification for high-risk behaviors and influenced their behaviors while living on the streets. For others, they may be associated with their homelessness. Finally, these experiences informed their attitudes toward death and dying as well as EOL care; homeless persons believe that care will be poor at the EOL. CONCLUSIONS: Findings from this study have implications for addressing social services, health promotion, prevention, and EOL care for homeless persons, as well as for others who are poor and disenfranchised.

Dying on the streets: homeless persons' concerns and desires about end of life care.

BACKGROUND: There is little understanding about the experiences and preferences at the end of life (EOL) for people from unique cultural and socioeconomic backgrounds. Homeless individuals are extreme examples of these overlooked populations; they have the greatest risk of death, encounter barriers to health care, and lack the resources and relationships assumed necessary for appropriate EOL care. Exploring their desires and concerns will provide insight for the care of this vulnerable and disenfranchised population, as well as others who are underserved. OBJECTIVE: Explore the concerns and desires for EOL care among homeless persons. DESIGN: Qualitative study utilizing focus groups. PARTICIPANTS: Fifty-three homeless persons recruited from agencies providing homeless services. MEASUREMENTS: In-depth interviews, which were audiotaped and transcribed. RESULTS: We present 3 domains encompassing 11 themes arising from our investigation, some of which are previously unreported. Homeless persons worried about dying and EOL care; had frequent encounters with death; voiced many unique fears, such as dying anonymously and undiscovered; favored EOL documentation, such as advance directives; and demonstrated ambivalence towards contacting family. They also spoke of barriers to EOL care and shared interventions to improve dying among the very poor and estranged. CONCLUSIONS: Homeless persons have significant personal experience and feelings about death, dying, and EOL care, much of which is different from those previously described in the EOL literature about other populations. These findings have implications not only for homeless persons, but for others who are poor and disenfranchised.

Infrastructure requirements for practice-based research networks.

BACKGROUND: The practice-based research network (PBRN) is the basic laboratory for primary care research. Although most PBRNs include some common elements, their infrastructures vary widely. We offer suggestions for developing and supporting infrastructures to enhance PBRN research success. METHODS: Information was compiled based on published articles, the PBRN Resource Center survey of 2003, our PBRN experiences, and discussions with directors and coordinators from other PBRNs. RESULTS: PBRN research ranges from observational studies, through intervention studies, clinical trials, and quality of care research, to large-scale practice change interventions. Basic infrastructure elements such as a membership roster, a board, a director, a coordinator, a news-sharing function, a means of addressing requirements of institutional review boards and the Health Insurance Portability and Accountability Act, and a network meeting must exist to support these initiatives. Desirable elements such as support staff, electronic medical records, multiuser databases, mentoring and development programs, mock study sections, and research training are costly and difficult to sustain through project grant funds. These infrastructure elements must be selected, configured, and sized according to the PBRN's self-defined research mission. Annual infrastructure costs are estimated to range from $69,700 for a basic network to $287,600 for a moderately complex network. CONCLUSIONS: Well-designed and properly supported PBRN infrastructures can support a wide range of research of great direct value to patients and society. Increased and more consistent infrastructure support could generate an explosion of pragmatic, generalizable knowledge about currently understudied populations, settings, and health care problems.