Stakeholder Advisory Board Research Articles

Through Their Eyes: Using Photovoice to Capture the Capacity-Building Journey of Long Covid Patient Experts.

Long Covid, characterised by persistent symptoms following the coronavirus disease 2019 (COVID-19) infection, significantly impacts the quality of life. Engaging patients in research and care through participatory methods can enhance a shared understanding of illness and improve the relevance of research. We define Patient Experts (PEs) as persons (including patients, caregivers and providers) who have completed a series of training sessions on team building, research methods and communication at the Patient Engagement Studio, University of South Carolina (PES USC). This study explores the use of photovoice to document the experiences and capacity-building journey of Long Covid PEs within PES USC. The study employed photovoice within the COVID-19-Focused Virtual Patient Engagement Studio (CoVIP Studio). PEs submitted photographs and narratives at two distinct time points. Among the 18 PEs who participated in the project, 47 photos were collected during the training, and 31 were collected at the project's conclusion. Thematic analysis was conducted to capture changes in patient perspectives and engagement. Initial themes identified were "Hope through Community," "Collaborative Education and Research" and "Strength and Endurance." By the project's end, themes had evolved to "Working as a Team to Share and Acquire Knowledge," "Enhanced Confidence in the Future of Care" and "Perseverance and Progress." These findings highlight the transformative impact of patient engagement and the utility of photovoice in documenting longitudinal shifts in patient perspectives. Photovoice effectively engaged Long Covid patients and captured their evolving roles and perceptions as PEs. The study underscores the value of patient-led participatory methods in enhancing the relevance and applicability of clinical research, advocating for their broader adoption to improve patient-centred care and research outcomes. A CoVIP Studio stakeholder advisory board (CoVIP SAB) guided the co-development and implementation of this project. The CoVIP SAB comprised nine members with complementary skills and expertise, including three patients, three clinicians who provide care to patients with COVID-19 and three researchers with expertise in patient-centred research, COVID-19 and/or patient engagement and collaborate with patients as co-investigators. The board contributed to project design and implementation, refining photovoice prompts and shaping dissemination strategies. In addition, one PE who actively participated in all phases of the project contributed to the writing of this paper and is a coauthor. All project activities involved patients and/or caregivers with lived experience of Long Covid.

The adolescent health network: A unique approach to sustained adolescent stakeholder engagement.

At least 70% of premature adult deaths result from behaviors starting and reinforced in adolescence. The use of adolescent-centered outcomes and the necessity of creating space for the adolescent voice regarding research that directly impacts them is often overlooked. These omissions result in proposals and solutions that lack consideration of adolescent ingenuity, preferences, and needs. In 2021, Penn State PRO Wellness was awarded a Patient-Centered Outcomes Research Institute Engagement Award with the goal of addressing the gap in the inclusion of adolescents in research focused on teenage health. The resultant Adolescent Health Network (AHN) was developed in partnership with a stakeholder advisory board comprised of adolescents, parents, health researchers, and school staff. The AHN currently consists of 12 schools and 43 adolescents who have completed stakeholder training. For adolescents, the AHN simulates a school club or career enrichment activity with incoming freshmen replacing graduating seniors over time. For health researchers, the AHN provides rapid, easy access to a pool of adolescents with stakeholder training who are available to provide input on various aspects of a study from recruitment plans, to survey tools to dissemination strategies. This manuscript details the development, execution, and data from this novel program.

DEVELOPMENT OF AN ONLINE DISASTER PREPAREDNESS PROGRAM FOR CAREGIVERS OF PERSONS WITH DEMENTIA

Abstract Individuals with medical conditions, including persons with dementia (PWD), are vulnerable in disaster situations. Disasters limit caregivers’ ability to continue with care due to stress, reduced resources and limited social support. We previously developed and tested a disaster preparedness program for older adults, Disaster PrepWise, and showed its impact on improving preparedness and personal emergency support networks. Through community engaged approaches, we adopted this program to specifically support family caregivers of PWD. Contents were revised based on the emergency management and dementia caregiving literature, and input from the stakeholder advisory board (SAB) consisting of caregivers, aging service providers, public health, and emergency management agencies. The SAB also provided guidance on implementation strategies from the lens of over-burdened caregivers. The new program includes a five-step process with an emphasis on the needs of caregivers and caregiving tasks, for example, developing emergency caregiving network to be activated during and after a disaster. The program also informs caregivers of tasks involved in the event of an emergency and provides various information such as how to navigate staying at public shelters with PWD, identify services during and after an emergency, and manage stress. Preliminary data shows high levels of acceptance and perceived usefulness of this caregiver-specific program. The program is perceived to fill a gap in current disaster management approaches that have limited ability to support vulnerable populations. Caregivers and service providers also praised this program’s ability to connect caregivers to community programs and resources. Additional pilot data will be presented.

Abstract A093: Implementation of a financial hardship screening among Native American patients with cancer

Abstract Introduction: Financial hardship and financial hardship screening are emerging concerns in oncology. Native American patients may be at increased risk of financial hardship due to factors including poverty, medical comorbidities, and lack of private health insurance coverage. Financial hardship for Native American patients with cancer has only rarely been studied, and implementation of screening for financial hardship for these patients has never been reported. Methods: Guided by input from a stakeholder advisory board consisting of patient, provider, and staff members at a single cancer center in Oklahoma, we implemented a financial hardship screening tool, the COmprehensive Score for financial Toxicity (COST) – Functional Assessment of Chronic Illness Therapy (FACIT) among 42 Native American patients with cancer. We conducted key informant interviews with ten of these patients and four clinical staff involved in the implementation process. Patient interviews included questions about current financial hardship, experiences in discussing financial hardship with the cancer care and primary care team, and acceptability of the COST-FACIT tool. Clinician interviews focused on their experience with the project, including implementation of the COST-FACIT tool, barriers to implementation, and sustainability. Recorded interviews were transcribed and thematically analyzed using MAXQDA® software. COST-FACIT tool data were analyzed using SAS v. 9.4 Results: Three-quarters (76%, n=32) of participants who completed the COST-FACIT tool reported moderate or severe financial hardship (Score <25 out of max 44, with lower scores indicating more hardship). A higher percentage of patients experiencing financial hardship were younger, covered by Medicaid, unemployed, not married/cohabiting, had lower income, and lower education compared to those with no/mild hardship (Scores ≥25). Among patients and clinicians, we identified themes of 1) financial hardship screening perception and intervention experiences, 2) screening efficacy and opportunities for improvement, and 3) systematic and patient related themes of Native American health systems and culture. Conclusions: Financial hardship was reported by the majority of Native American patients with cancer included in our study. Patients expressed a positive experience with the screening tool, including identification of financial challenges though timing of the tool in regards to their cancer diagnosis varied across patients. Clinicians experienced challenges in implementation of the COST-FACIT tool related to logistics, the COVID-19 pandemic, and concerns for sustainability. However, clinicians reported a positive experience with the tool and interactions with patients and referrals that resulted from the screening. Citation Format: Amanda E. Janitz, Amber S. Anderson-Buettner, Stefani D. Madison, Mark P. Doescher, Dorothy A. Rhoades. Implementation of a financial hardship screening among Native American patients with cancer [abstract]. In: Proceedings of the 16th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2023 Sep 29-Oct 2;Orlando, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2023;32(12 Suppl):Abstract nr A093.

An exposure-based implementation strategy to decrease clinician anxiety about implementing suicide prevention evidence-based practices: protocol for development and pilot testing (Project CALMER)

BackgroundClinicians often report that their own anxiety and low self-efficacy inhibit their use of evidence-based suicide prevention practices, including gold-standard screening and brief interventions. Exposure therapy to reduce clinician maladaptive anxiety and bolster self-efficacy use is a compelling but untested approach to improving the implementation of suicide prevention evidence-based practices (EBPs). This project brings together an interdisciplinary team to leverage decades of research on behavior change from exposure theory to design and pilot test an exposure-based implementation strategy (EBIS) to target clinician anxiety to improve suicide prevention EBP implementation.MethodsWe will develop, iteratively refine, and pilot test an EBIS paired with implementation as usual (IAU; didactic training and consultation) in preparation for a larger study of the effect of this strategy on reducing clinician anxiety, improving self-efficacy, and increasing use of the Columbia Suicide Severity Rating Scale and the Safety Planning Intervention in outpatient mental health settings. Aim 1 of this study is to use participatory design methods to develop and refine the EBIS in collaboration with a stakeholder advisory board. Aim 2 is to iteratively refine the EBIS with up to 15 clinicians in a pilot field test using rapid cycle prototyping. Aim 3 is to test the refined EBIS in a pilot implementation trial. Forty community mental health clinicians will be randomized 1:1 to receive either IAU or IAU + EBIS for 12 weeks. Our primary outcomes are EBIS acceptability and feasibility, measured through questionnaires, interviews, and recruitment and retention statistics. Secondary outcomes are the engagement of target implementation mechanisms (clinician anxiety and self-efficacy related to implementation) and preliminary effectiveness of EBIS on implementation outcomes (adoption and fidelity) assessed via mixed methods (questionnaires, chart-stimulated recall, observer-coded role plays, and interviews).DiscussionOutcomes from this study will yield insight into the feasibility and utility of directly targeting clinician anxiety and self-efficacy as mechanistic processes informing the implementation of suicide prevention EBPs. Results will inform a fully powered hybrid effectiveness-implementation trial to test EBIS’ effect on implementation and patient outcomes.Trial registrationClinical Trials Registration Number: NCT05172609. Registered on 12/29/2021.

A Collaborative Approach to Address Racism in a Community–Academic Partnership

The HERCULES Exposome Research Center at Emory University uses an exposome approach to study the environment's effect on health and community well-being. HERCULES is guided by a Stakeholder Advisory Board (SAB) that includes representatives of neighborhoods, nonprofit organizations, government agencies, and academic institutions in the Atlanta metropolitan region. This region (and the SAB) has a large proportion of Black residents, many of whom live in areas experiencing environmental injustices. Historic and current racial injustices in Atlanta and public health research made it imperative to initiate dialogue and implement actions to address racism and power dynamics that may impact research and partnerships between affected communities and our institution.After initial discussion, the HERCULES Community Engagement Core and SAB members formed a workgroup to develop an internal anti-racism process. The workgroup drafted an Anti-Racism Commitment, hosted a Racism and Equity Dialogue Series, and initiated a strategic planning process to implement the resulting recommendations, which fell into the following categories: anti-racist guidance/policies and recommendations for research, community engagement, and the department. Center leadership and the SAB were engaged throughout the iterative process.This deliberate and ongoing process allows HERCULES to identify and begin implementing action items that go beyond a written proclamation to address racialized power imbalances and systemic inequities. HERCULES is committed to working collaboratively to earn community trust while addressing systemic issues, recognizing that these are essential to forming research partnerships that address health inequities.

Evaluation of a stakeholder advisory board for an adolescent mental health randomized clinical trial

IntroductionCommunity engagement in research is widely accepted as best practice, despite gaps in existing frameworks to evaluate its process, context, and impact on research. The Screening in High Schools to Identify, Evaluate, and Lower Depression (SHIELD) study evaluated the use of a school-based major depressive disorder screening tool in the identification of symptoms and treatment initiation among adolescents, and was developed, implemented, and disseminated in partnership with a Stakeholder Advisory Board (SAB). We summarize outcomes of the evaluation strategy applied through our partnership with the SAB and explore gaps in the available engagement evaluation tools for mixed stakeholder populations including youth.MethodsSHIELD study SAB members (n = 13; adolescents, parents, mental health and primary care providers, and professionals from education and mental health organizations) advised on study design, implementation, and dissemination over a three-year period. Both SAB members and study team members (i.e., clinician researchers, project managers) were invited to quantitatively and qualitatively evaluate stakeholder engagement after each project year. At the conclusion of the study, SAB members and study team members were asked to evaluate the application of engagement principles in overall stakeholder engagement across the study period, using portions of the Research Engagement Survey Tool (REST).ResultsSAB members and study team members responded similarly when evaluating engagement process (i.e., valued on team, voice represented); means ranged from 3.9 to 4.8 out of 5 points across all three project years. Reported engagement within study-specific engagement activities (i.e., meetings, study newsletter) varied from year to year, with some discrepancy between SAB member and study team evaluations. Using REST, SAB members reported the alignment of their experience with key engagement principles the same or higher than study team members. Qualitative feedback at the conclusion of the study generally matched quantitative measures; adolescent SAB members, however, reported disengagement from stakeholder activities that was not accurately or effectively captured in evaluation strategies employed across the study period.ConclusionsChallenges exist in effectively engaging stakeholders and evaluating their engagement, particularly among heterogenous groups that include youth. Evaluation gaps should be addressed through the development of validated instruments that quantify the process, context, and impact of stakeholder engagement on study outcomes. Consideration should be given to collecting parallel feedback from stakeholders and study team members to fully understand the application and execution of engagement strategy.

COVID-19 and MCO-community partnerships to address enrollee social needs.

Many Medicaid managed care organizations (MCOs) now screen enrollees and connect them to community-based organizations (CBOs) to address unmet social needs. COVID-19 has significantly disrupted health care delivery and overall economic activity in the United States. We examined how partnerships between Medicaid MCOs and CBOs to address social determinants of health have been affected by the pandemic. Guided by questions and recruitment strategies developed with our stakeholder advisory board, we conducted 26 interviews with representatives from all 6 of Kentucky's Medicaid MCOs. In-depth, structured interviews for data collection and iterative content analyses to identify themes. Several themes emerged, including substantial increases in enrollees' unmet needs and the demand to find new ways to be responsive, changing funding patterns, disruptions to and evolving modes of communication, and shifting partner relationships. In virtually all areas of impact, COVID-19 has been associated with both negative and positive change. Unmet social needs associated with the pandemic placed tremendous strain on CBOs, limiting their capacity to sustain some programs and partnerships. Isolation associated with COVID-19 also had wide-ranging effects on service delivery, communication with enrollees and partners, and the ability to maintain relationships. Nonetheless, the pandemic also had some silver linings, including additional resources and flexibility for addressing unmet needs. Federal and state agencies, along with MCO leaders, should carefully evaluate what innovations have been particularly effective during the pandemic and craft new flexibilities into their policies, procedures, and regulations.

Integration of Distributed Streamflow Measurement Metadata for Improved Water Resource Decision-Making

Streamflow data are critical for monitoring and managing water resources, yet there are significant spatial gaps in our federal monitoring networks with biases toward large perennial rivers. In some cases, streamflow monitoring exists in these spatial gaps, but information about these monitoring locations is challenging to obtain. Here, we present a streamflow catalog for the United States Pacific Northwest that includes current and historical streamflow monitoring location information obtained from 32 organizations (other than the U.S. Geological Survey), which includes 2661 continuous streamflow gaging locations (22% are currently active) and 30,557 discrete streamflow measurements. A stakeholder advisory board with representatives from organizations that operate streamflow monitoring networks identified metadata requirements and provided feedback on the Streamflow Data Catalog user interface. Engagement with the water resources community through this effort highlighted challenges that water professionals face in collecting and managing streamflow data so that data are findable, accessible, interoperable, and reusable (FAIR). Over 60% of the streamflow monitoring locations in the Streamflow Data Catalog are not available online and are thus not findable through web search engines. Providing organizations technical assistance with standard measurement procedures, metadata collection, and web accessibility could substantially increase the availability and utility of streamflow information to water resources communities.

Patients’ opinions on participation in patient-centered outcomes research in community pharmacies: A qualitative study

BackgroundPatient-centered outcomes research (PCOR) often brings patient voices, thoughts, and opinions into the research process, allowing patients to have a say in the research process from project inception to dissemination of results. Community pharmacy teams are well-situated to engage patients in their own health and in research, given their trusting relationships with patients and access in communities. ObjectiveTo gather patients’ opinions on participation in PCOR at their local community pharmacy. MethodsFour regional focus groups representing western, central, northeastern, and southeastern Pennsylvania were conducted. A single community pharmacy in each region recruited patients to participate in each focus group. A focus group discussion guide was developed and reviewed by a Stakeholder Advisory Board that consisted patients, pharmacists, and researchers. Questions focused on patients’ relationships with their pharmacy and pharmacist, perceptions of research occurring at their local pharmacy, and patient engagement methods. Focus group sessions were audio-recorded, transcribed verbatim, and independently coded by 2 investigators. Coding discrepancies were reconciled through discussion, and a qualitative inductive thematic analysis was conducted by the research team. ResultsA total of 44 patients participated in one of 4 focus groups. Patients provided insights into what would make them more likely to participate in PCOR at their local community pharmacy. Four themes emerged from the discussions: (1) Understanding the impact to one’s health or community affects participation; (2) Patients prefer to schedule research activities at times outside of prescription pick-up or drop-off; (3) Trusted relationships can be leveraged for recruitment; and (4) Face-to-face engagement is preferred for participant recruitment. ConclusionPatients want to engage in research in a way that is respectful of their time and matters to them. Strong patient-pharmacist relationships are essential for patient engagement in and acceptance of PCOR opportunities in community pharmacies. Community pharmacies may be rich locations to engage patients in PCOR.

Effective engagement of a stakeholder advisory board in severe mental illness (SMI) research: A case study of a clinical trial to improve adherence among people with SMI and hypertension.

Poor adherence to antihypertensive medication occurs in 50-80% of patients. An ongoing randomized controlled trial (RCT) is evaluating a personalized mobile-health intervention in poorly adherent hypertensive persons with bipolar disorder. To enhance efficacy, the ongoing trial elicited guidance from a Stakeholder Advisory Board (SAB) comprised of patients, family members, clinicians, and health system administrators. Our goal is to describe the formation, role, decision-making process, and key contributions of the SAB as a means of demonstrating meaningful community engagement in mental health research. Using models and measures from the field of implementation science, eleven SAB members convened across three meetings followed by quantitative surveys that assessed SAB member satisfaction and engagement during the meeting. Significant suggestions from the SAB included 1) expanding inclusion/exclusion criteria, and 2) operationalizing remote implementation of the RCT. Primary study implementation challenges identified by the SAB were 1) participant difficulty engaging in the mHealth intervention, and 2) identification of procedures for monitoring participant adherence to the RCT protocol and contacting under-engaged participants. Quantitative surveys indicated that all SAB members believed that the objectives of the meetings were clear, perceived that they were able to participate in the discussions, and that they were heard. Increasing evidence demonstrates the feasibility of engaging with SABs in clinical research and that this process improves intervention design, increases participant engagement, reduces mental health-related stigma, and produces more effective implementation strategies. We encourage future investigators to use an implementation science framework in partnership with SABs to refine their proposed interventions and improve clinical outcomes.

Similar values, different expectations: How do patients and providers view 'health' and perceive the healthcare experience?

IntroductionNo one can argue on the importance of health in one's life. However, the value of health in the context of other priorities for individuals is not always as clear. Further, patients' experience with the healthcare system is rarely contrasted with the service providers' expectations. The aim of this paper is to examine and compare patients' and providers' own definitions of health and their perceptions of the healthcare delivery experience from the lens of residents and providers in West Baltimore, Maryland.MethodsThis was a qualitative study with semi‐structured focus groups (15 sessions) and individual in‐depth interviews (21 interviews) with 94 participants. Two independent coders thematically analysed the transcripts.ResultsPatients identified five areas where health systems can help them stay healthy or become healthier: affordability and costs of care; accessibility; clinician/patient communication; addressing social determinants; and stigma and trust. Providers acknowledged that the healthcare experience is not always perfect. While the medical team focuses on conversations that enhance medical care, patients are expecting providers to touch on subjects beyond medical care.ConclusionsPatients and providers need to consider that although they have a common value towards health, there is still a gap in what users expect and what providers can offer. To further align those expectations, there is a need for increasing involvement of patient in care administration and improving dialogue between the parties about these differences.Patient or Public ContributionA Stakeholder Advisory Board (SAB)—comprised of a patient, two community leaders, a physician and two healthcare administrators—was instrumental in codeveloping the study material (e.g., interview guides), engaging patients in the research process, identifying participants and codeveloping dissemination material. Two SAB members—Gail Graham, a patient consultant/professor, and Marcia Cort, a physician—are coauthors.

Defining the Exposome Using Popular Education and Concept Mapping With Communities in Atlanta, Georgia.

IntroductionThe exposome concept provides a framework to better incorporate the environment into the study of health and disease and has been defined by academics to encompass all lifetime exposures including toxicants, diet, and lifestyle choices. However, initial applications of the exposome concept have been less apt at measuring social determinants of health, focusing primarily on conventional environmental exposures and lifestyle choices that do not reflect the complex lived experience of many communities. To bring community voice into the exposome concept, the HERCULES Exposome Research Center and its Stakeholder Advisory Board co-developed the Exposome Roadshow. We present and discuss the resulting community-exposome definition to inform and improve exposome research.Materials and MethodsFour communities from distinct areas across metro-Atlanta participated in separate 2-day Exposome Roadshow workshops with concept mapping. Aligned with a popular education approach in which community knowledge is used to work collectively for change, concept mapping provided a systematic method to collect and visualize community members' knowledge and create a shared understanding to take action. Community members brainstormed, sorted, and rated their responses to the prompt: “What in your environment is affecting your and your community's health?” Responses were analyzed and visually depicted by concept maps consisting of separate but interrelated clusters of ideas. Community members discussed and validated the maps, selecting a final map illustrating their community's exposome.ResultsA total of 118 community members completed concept mapping. On average communities identified 7 clusters to define their exposome. The resulting concept maps offer a community definition of the exposome. Five major themes arose across all four communities: conventional environmental concerns, built environment, social relationships, crime and safety, and individual health and behaviors.DiscussionThe resulting community-exposome definition demonstrates the importance of expanding the scope of exposures beyond traditional environmental influences to include the lived experience of individuals and communities. While newer exposome definitions align more closely with this community definition, traditional exposome methods do not routinely include these factors. To truly capture the totality of lifetime exposures and improve human health, researchers should incorporate community perspectives into exposome research.

Enhancing participant diversity during recruitment for a national COVID-19 surveillance study using stakeholder engagement.

In May 2020 A COVID-19 Community Research Partnership, a surveillance study aimed at learning about the spread of the COVID-19 virus in local communities and among healthcare workers, began. Recognizing the disproportionate impact of COVID-19 on low-income and racial/ethnic minority groups, recruitment strategies that enabled diverse representation and engagement were used. We describe a community based participatory approach to engage a stakeholder advisory board to guide recruitment and data collection. Study Design was a community based participatory research study. Approximately 30 participants comprise the SAB. The study recruits participants from a large metropolitan area, and Atrium Health, a large, vertically integrated, not-for-profit healthcare system. Population Studied >12,000 community participants Outcome Measures recruitment and demographics of participants Results With SAB guidance we recruited >12,000 participants. The highly engaged stakeholders provided valuable input to guide the development of recruitment materials (¬flyers, emails, social media, websites, videos); use of incentives (free phones to complete the online symptom survey); and community outreach opportunities (primary care practices in underserved neighborhoods; COVID-19 mobile testing units located in underserved communities; mask giveaway events; and the local public school system) The SAB identified groups that the research team then partnered with to share information about the study (Village Heart BEAT, a community-based organization aimed at improving the health of African American and Hispanic populations; and HealthCare System employee affinity groups serving Hispanic/Latino and African American communities). Demographics include 90% White/Caucasian, 5% Black/African American; 3% Hispanic and 2% Asian or Pacific Islander; 38% are healthcare workers; 67% are female. Conclusions Use of a community stakeholder advisory board has enhanced understanding and participation in a COVID-19 Community Research Partnership. Engaging diverse community stakeholders early in the research process was essential for ensuring data collection efforts are patient-centered and tailored to reach diverse communities.

Are Stakeholder Prioritized Post-Acute Care Practices Documented and Do They Improve Outcomes?

The receipt and intensity of rehabilitation services, such as occupational and physical therapy, have been associated with lower risk of readmissions. Yet, little is known about the care. This study quantified the frequency of documented post-acute care (PAC) stakeholder-prioritized practices and their associations with hospital readmissions. A PAC stakeholder advisory board (e.g., physicians, rehabilitation providers across settings) prioritized key practices to evaluate. Medicare claims and electronic medical records were used to construct an episode of care for patients age 65 or older. Eligible patients were discharged from one of nine acute hospitals to a PAC setting (i.e., inpatient rehabilitation, skilled nursing, home health) within one large health system between August 2016 and August 2018. Descriptive statistics characterized the cohort and frequency of documented practices. Logistic regression examined associations among the practices and readmissions, by setting. Stakeholders prioritized (a) education, (b) cognition assessment and treatment, and (c) medication management. Among these PAC patients (n=3,227) there was variation in documentation for each practice by setting. Documentation of medication management at any point during the stay ranged from less than 1% to 54% of patient stays among settings. There was a significant relationship between the practices and readmissions. Within inpatient rehabilitation, every additional day patient and caregiver education was documented by occupational therapy was associated with 21% lower odds of readmission (p<0.05). This study highlights the variability in documentation of stakeholder-prioritized practices across PAC and their associations with readmissions. Future work is needed to enhance the systematic delivery and documentation of these practices.

Evaluating the Impact of Incentives on Clinical Trial Participation: Protocol for a Mixed Methods, Community-Engaged Study.

BackgroundMonetary incentives in research are frequently used to support participant recruitment and retention. However, there are scant empirical data regarding how researchers decide upon the type and amount of incentives offered. Likewise, there is little guidance to assist study investigators and institutional review boards (IRBs) in their decision-making on incentives. Monetary incentives, in addition to other factors such as the risk of harm or other intangible benefits, guide individuals’ decisions to enroll in research studies. These factors emphasize the need for evidence-informed guidance for study investigators and IRBs when determining the type and amount of incentives to provide to research participants.ObjectiveThe specific aims of our research project are to (1) characterize key stakeholders’ views on and assessments of incentives in biomedical HIV research; (2) reach consensus among stakeholders on the factors that are considered when choosing research incentives, including consensus on the relative importance of such factors; and (3) pilot-test the use of the guidance developed via aims 1 and 2 by presenting stakeholders with vignettes of hypothetical research studies for which they will choose corresponding incentive types.MethodsOur 2-year study will involve monthly, active engagement with a stakeholder advisory board of people living with HIV, researchers, and IRB members. For aim 1, we will conduct a nationwide survey (N=300) among people living with HIV to understand their views regarding the incentives used in HIV research. For aim 2, we will collect qualitative data by conducting focus groups with people living with HIV (n=60) and key informant interviews with stakeholders involved in HIV research (people living with HIV, IRB members, and biomedical HIV researchers: n=36) to extend and deepen our understanding of how incentives in HIV research are perceived. These participants will also complete a conjoint analysis experiment to gain an understanding of the relative importance of key HIV research study attributes and the impact that these attributes have on study participation. The data from the nationwide survey (aim 1) will be triangulated with the qualitative and conjoint analysis data (aim 2) to create 25 vignettes that describe hypothetical HIV research studies. Finally, individuals from each stakeholder group will select the most appropriate incentive that they feel should be used in each of the 25 vignettes (aim 3).ResultsThe stakeholder advisory board began monthly meetings in March 2021. All study aims are expected to be completed by December 2022.ConclusionsBy studying the role of incentives in HIV clinical trial participation, we will establish a decision-making paradigm to guide the choice of incentives for HIV research and, eventually, other types of similar research and facilitate the ethical recruitment of clinical research participants.Trial RegistrationClinicalTrials.gov NCT04809636; https://clinicaltrials.gov/ct2/show/NCT04809636International Registered Report Identifier (IRRID)DERR1-10.2196/33608

Expanding upon the Promise of PCOR: The Patients Program Learning PCOR System Framework

Research ObjectiveMany PCOR studies apply principles aligned with the PCORI engagement rubric while planning, conducting, and disseminating research. Nonetheless, institutions may lack the capacity to incorporate emerging PCOR methods and results across their research infrastructure efficiently, which can limit opportunities for shared “learning” that occurs within an individual study across projects and PCOR teams.To address this gap, The PATIENTS Program at the University of Maryland, Baltimore developed a PCORI‐funded framework for a “Learning PCOR System”. A Learning PCOR System generates PCOR evidence, synthesizes PCOR evidence from the peer‐reviewed literature and other reliable sources, and prioritizes and interprets PCOR evidence for all stakeholders so that they remain actively engaged across the PCOR continuum ‐ not just when they are involved in an individual PCOR study.Study DesignPublic deliberation is an approach designed to elicit informed public views on complex issues. The four steps of public deliberation are: 1) Convene, 2) Learn, 3) Deliberate, and 4) Report. In collaboration with BCT Partners, The PATIENTS Program designed the four deliberative sessions for this project to mirror the 10‐Step Framework Continuous Patient Engagement in Comparative Effectiveness Research: 1) planning; 2) doing; 3) sharing; and 4) delivering results. The Stakeholder Advisory Board co‐developed a list of potential participants, stakeholders strategically positioned and willing to participate in co‐developing, conducting, translating, and/or disseminating PCOR to its stakeholder community. In response to the COVID‐19 pandemic, all four sessions were conducted virtually using the Zoom conference platform.The team conducted exit interviews with participants to evaluate each session's process and materials. Individual session results in the form of notes and an infographic were sent to participants for review and feedback. The proposed framework was developed based on the information collected from each of the deliberative sessions and exit interviews.Population StudiedSessions had representation from patients, healthcare providers, PCOR researchers, and other stakeholders, including patient advocates, community leaders, payers (insurers), and policymakers. All participants had participated in at least one PCOR study prior to the sessions.Principal FindingsThe iterative deliberative process model provided a scaffold to ensure stakeholder voices were included at every step of the Learning PCOR System framework, to facilitate The PATIENTS Program “learning while doing”.ConclusionsA Learning PCOR System built with the input from diverse stakeholders allows for PCOR practitioners to effectively and rapidly share results and PCOR methods across an institution and build connections across PCOR teams. It also provides a space for bi‐directional learning between community members, stakeholders, patient advisors, and researchers.Implications for Policy or PracticeA Learning PCOR System has the capacity for authentic shared learning across PCOR studies and incorporation of patient preferences, cultural and healthcare delivery context. Emerging evidence can be rapidly returned to patients and other stakeholders who could benefit from the information to increase engagement in PCOR research. In addition, other regions experiencing a lack of trust with patient communities could utilize the framework to improve their PCOR systems. Establishing trust with PCOR partners and recruitment populations builds bridges for open and enduring engagement.Primary Funding SourcePatient‐Centered Outcomes Research Institute.

Reflections from the forgotten frontline: 'The reality for children and staff in residential care' during COVID-19.

Currently, 78,150 children are in care in England, with 11% of the most vulnerable living in 2,460 residential homes due to multitype traumas. These children require safe and secure trauma‐informed therapeutic care. However, the children's residential care workforce delivering this vital care is an unrepresented, under‐researched and largely unsupported professional group. The workforce undertakes physically and emotionally challenging work in difficult conditions, exacerbated by the COVID‐19 pandemic. Practitioner wellbeing is directly associated with outcomes for children. Therefore, we sought to understand how experiences within the workforce could improve overall working conditions, and thus outcomes for staff and children. Thirty participants took part in a survey, providing feedback on their experiences and the situations they faced during the English lockdown April‐June 2020. Two participants also opted to take part in a teleconference interview, rather than survey, although were asked the same questions. Data were analysed through thematic analysis. A stakeholder advisory board supported the project, including frontline staff, care leavers, service managers and policy researchers. The advisory board assisted in reflecting on the data from the survey and interviews to generate a complete analysis. Overall, staff require facilitated safe spaces for peer‐support, reflective and emotionally supportive supervision. An organisational awareness that staff wellbeing is intrinsically connected to the wellbeing and therapeutic outcomes of the children they care for is essential. Further, staff require a sense of belongingness to feel safe and competent in their role due to a lack of external recognition and professional representation or validation. Based on the findings of the study and an iterative process with the stakeholder advisory board, we created a Wellbeing Charter for adoption within organisations to promote and protect the wellbeing of this vital workforce. The COVID‐19 pandemic has exposed professional, financial and environmental inequalities that affect these frontline workers. Implementing organisational, statutory and policy‐driven initiatives to prioritise their wellbeing are essential for the vulnerable children they care for.

Development and acceptability of an educational video about a smoking cessation quitline for use in adult outpatient mental healthcare

Tobacco use is a leading preventable cause of early mortality and is prevalent among adults with mental health diagnoses, especially in the southern USA. Increasing cessation resources in outpatient mental health care and targeting individuals most receptive to changing their behavior may improve cessation. Drawing on the transtheoretical model, our goals were to develop an educational video about the Louisiana Tobacco Quitline and evaluate its acceptability. We designed the video with knowledge derived from Louisiana-specific data (2016 Louisiana Adult Tobacco Survey, N = 6,469) and stakeholder feedback. Bivariate associations between demographic/tobacco-use characteristics and participants' stage of quitting (preparation phase vs. nonpreparation phase) were conducted, which informed design elements of the video. Four stakeholder advisory board meetings involving current smokers, mental health clinicians, and public health advocates convened to provide iterative feedback on the intervention. Our stakeholder advisory board (n = 10) and external stakeholders (n = 20) evaluated intervention acceptability. We found that 17.9% of Louisiana adults were current smokers, with 46.9% of them in the preparation phase of quitting. Using insights from data and stakeholders, we succeeded in producing a 2-min video about the Louisiana Tobacco Quitline which incorporated three themes identified as important by stakeholders: positivity, relatability, and approachability. Supporting acceptability, 96.7% of stakeholders rated the video as helpful and engaging. This study demonstrates the acceptability of combining theory, existing data, and iterative stakeholder feedback to develop a quitline educational video. Future research should examine whether the video can be used to reduce tobacco use.

Implementation of Disaster PrepWise, an Online Disaster Preparation Tool for Older Adults

Older adults are less prepared for disaster situations than younger adults due to expenses, complicated preparation processes, and lack of support. We previously developed and tested a disaster preparedness program for older adults and showed its impact on improving preparedness and personal emergency support network. Using a 5-step community-engaged approach and in collaboration with our Stakeholder Advisory Board (SAB), we adapted this Disaster PrepWise program to an online platform and developed implementation plans within existing community-based service infrastructure. Community engagement processes allowed us to create an online tool that was considered “important” and “useful” by older adults and program deliverers. In terms of reach, 73 potential participants attended an introductory presentation and 47 participated. Those who participated were similar to those who did not in terms of gender and race. Twenty-seven participants completed surveys before and one-month after the program and reported engaging in an average of 2.9 additional recommended behaviors after intervention (t(26)=2.85, p=0.00). The major organizational barrier to adoption was limited staff time. Participating older adults reported adopting what they learned through the program in their daily life. Implementation process data showed multiple modifications made during delivery including delivery of the program in one instead of two sessions. The implementing organization reported their likelihood of maintaining this program within their practice as “extremely likely.” Community-engaged approaches and process data led to an acceptable and useful program and implementation strategies that helped enhance preparedness behaviors among older adults. Future work will focus on program dissemination and larger scale evaluation.