Stakeholder Advisory Committee Research Articles

Promoting sustained access to cognitive behavioral therapy for insomnia in Australia: a system-level implementation program.

Insomnia is a highly prevalent and debilitating disorder. Cognitive behavioral therapy for insomnia (CBTi) is the recommended 'fist line' treatment, but is accessed by a minority of people with insomnia. This paper describes a system-level implementation program to improve access to CBTi in Australia to inform CBTi implementation in other locations. From 2019 to 2023, we conducted a program of work to promote sustained change in access to CBTi in Australia. Three distinct phases included 1) Scoping and mapping barriers to CBTi access, 2) Analysis and synthesis of barriers and facilitators to devise change goals, and 3) Structured promotion and coordination of change. We used a system-level approach, knowledge brokerage, and co-design, and drew on qualitative, quantitative, and implementation science methods. We identified barriers to CBTi access from the perspectives of people with insomnia, primary care clinicians, and the health system. A stakeholder advisory committee was convened to co-design change goals, identify modifiable barriers, devise program logic and drive change strategies. We commenced a program to promote system-level change in CBTi access via; improved awareness and education of insomnia among primary care clinicians, self-guided interventions, and advocating to Government for additional CBTi funding mechanisms. This implementation program made significant progress toward improving access to CBTi in Australia. Ongoing work is required to continue this program, as long-term system-level change requires significant and sustained time, effort and resources from multiple stakeholders. This program may be used to inform CBTi implementation activities in other locations.

Developing a city-wide, community-engaged cancer disparities research agenda.

In response to high levels of cancer disparities in Philadelphia, PA, three NCI-designated clinical cancer centers formed Philadelphia Communities Conquering Cancer (PC3) to bring stakeholders together and establish infrastructure for future cancer reducing initiatives. The PC3 coalition aimed to develop a prioritized cancer disparities research agenda in order to align cancer center resources and research interests with the concerns of the community about cancer, and to ensure that initiatives were patient- and community-centered. Agenda development activities culminated in a city-wide cancer disparities conference. The conference, attended by 55 diverse stakeholders, was the venue for small group discussion sessions about cancer concerns related to prevention, early detection, treatment, survivorship, and quality of life. Sessions were guided by a moderator guide and were audiorecorded, transcribed, and analyzed by the PC3 leadership team. Results were reviewed and consensus was achieved with the help of PC3's Stakeholder Advisory Committee. Stakeholders identified four thematic areas as top priorities for cancer disparities research and action in Philadelphia: communication between patients, providers, and caregivers; education that reaches patients and community members with tailored and targeted information; navigation that assists people in finding and accessing the right cancer screening or treatment option for them; and representation that diversifies the workforce in clinics, cancer centers, and research offices. A community-informed, prioritized research agenda provides a road map for the three cancer centers to collaborate on future initiatives that are important to patients and stakeholders, to ultimately reduce the burden of cancer for all Philadelphians.

A question prompt list for sudden unexpected death in epilepsy

A question prompt list for sudden unexpected death in epilepsy

The ACTIV-6 Stakeholder Advisory Committee: a model for virtual engagement in decentralized clinical trials.

Engaging patients, caregivers, and other stakeholders to help guide the research process is a cornerstone of patient-centered research. Lived expertise may help ensure the relevance of research questions, promote practices that are satisfactory to research participants, improve transparency, and assist with disseminating findings. Traditionally engagement has been conducted face-to-face in the local communities in which research operates. Decentralized platform trials pose new challenges for the practice of engagement. We used a remote model for stakeholder engagement, relying on Zoom meetings and blog communications. Here we describe the approach used for research partnership with patients, caregivers, and clinicians in the planning and oversight of the ACTIV-6 trial and the impact of this work. We also present suggestions for future remote engagement. The ACTIV-6 experience may inform proposed strategies for future engagement in decentralized trials.

A study protocol for a cluster randomized pragmatic trial for comparing strategies for implementing primary HPV testing for routine cervical cancer screening in a large health care system

BackgroundLimited guidance exists regarding implementation strategies that best facilitate cancer screening practice substitution and achieve optimal stakeholder-centered outcomes. Here we describe the protocol for a randomized pragmatic trial comparing two implementation strategies to facilitate substitution of primary HPV screening for Pap and HPV co-testing to perform routine cervical cancer screening of women aged 30–65 years at Kaiser Permanente Southern California (KPSC). MethodsTwelve service areas within KPSC will be randomized to a “centrally-administered system-wide implementation + local-tailored implementation” strategy or a “centrally-administered system-wide implementation only” strategy. The centrally-administered strategy comprises clinician and staff educational activities. Sites in the local-tailored arm will then conduct a structured local needs assessment followed by site-specific selection and deployment of implementation interventions. Surveys and interviews will be conducted among women and providers from the primary care and ob/gyn departments prior to the system-wide transition, shortly after the transition, and after the completion of local-tailored interventions. A stakeholder advisory committee will assist with study design, defining stakeholder-centered outcomes, and developing data collection tools. ResultsThe primary outcome of interest is uptake of primary HPV screening. Secondary provider-centered outcomes include provider knowledge, delivery of patient education, satisfaction with the practice substitution process, and resistance to primary HPV screening. Secondary patient-centered outcomes include patient knowledge, stigma, and satisfaction with the screening process. Intervention fidelity will also be measured via surveys. ConclusionsFindings from this study will help inform future use of a local-tailored implementation strategy for adopting primary HPV screening at large health care systems. Findings may also be applicable to other types of practice substitution.

Culturally Adapting Evidence on Dementia Prevention for Ethnically Diverse Communities: Lessons Learnt from co-design

ABSTRACT Objectives 40% of dementia cases can be prevented by addressing 12 lifestyle factors. These risk factors have increased presence in ethnic minorities, yet dementia prevention messages have not reached these communities. This article investigates the experience of co-designing a dementia prevention animated film with 9 ethnic groups in Australia. Methods Evidence-based recommendations were adapted through an iterative process involving workshops with a stakeholder advisory committee and nine focus groups with 104 participants from the Arabic-, Hindi-, Tamil-, Cantonese-, Mandarin-, Greek-, Italian-, Spanish-, and Vietnamese-speaking communities. Data were analyzed using the Normalization Process Theory. Results Cultural adaptation involves consideration of the mode of delivery, imagery and tone of the resource being developed; ensuring cultural adequacy; anticipating the need of the end-users; and managing linguistic challenges associated with working across multiple languages. Conclusions Learnings from this co-design process offer valuable insights for researchers and program developers who work with ethnic minority groups. Clinical Implications • Adaptation across cultures and languages is a negotiation not a consensus building exercise • Linguistic adaptation requires consideration of the education levels, and linguistic and intergenerational preferences of community members • Co-designing across multiple languages and cultures risks “flattening out” key aspects of cultural specificity.

Perceived COVID-19 health and job risks faced by digital platform drivers and measures in place to protect them: A qualitative study.

IntroductionAs they deliver food, packages, and people across cities, digital platform drivers (gig workers) are in a key position to become infected with COVID‐19 and transmit it to many others. The aim of this study is to identify perceived COVID‐19 exposure and job risks faced by workers and document the measures in place to protect their health, and how workers responded to these measures.MethodsIn 2020–2021, in‐depth interviews were conducted in Ontario, Canada, with 33 digital platform drivers and managers across nine platforms that delivered food, packages, or people. Interviews focused on perceived COVID‐19 risks and mitigation strategies. Audio recordings were transcribed verbatim and uploaded to NVivo software for coding by varied dual pairs of researchers. A Stakeholder Advisory Committee played an instrumental role in the study.ResultsAs self‐employed workers were without the protection of employment and occupational health standards, platform workers absorbed most of the occupational risks related to COVID‐19. Despite safety measures (e.g., contactless delivery) and financial support for COVID‐19 illnesses introduced by platform companies, perceived COVID‐19 risks remained high because of platform‐related work pressures, including rating systems. We identify five key COVID‐19 related risks faced by the digital platform drivers.ConclusionWe situate platform drivers within the broad context of precarious employment and recommend organizational‐ and government‐level interventions to prevent digital platform worker COVID‐19 risks and to assist workers ill with COVID‐19. Measures to protect the health of platform workers would benefit public health aims by reducing transmission by drivers to families, customers, and consequently, the greater population.

Stakeholder Engagement In a Comparative Effectiveness/Implementation Study to Prevent Staphylococcus Aureus Infection Recurrence: CA-MRSA Project (CAMP2).

Methicillin-resistant or methicillin-sensitive Staphylococcus aureus skin and soft tissue infections pose serious clinical and public health challenges. Few protocols exist for outpatient education, decolonization and decontamination. This trial implemented infection prevention protocols in homes via community health workers/Promotoras. We engaged clinicians, patient stakeholders, clinical and laboratory researchers, New York-based federally qualified health centers and community hospital emergency departments. The Clinician and Patient Stakeholder Advisory Committee (CPSAC) convened in person and remotely for shared decision-making and trial oversight. The intervention trial consented participants with skin and soft tissue infections from Methicillin-resistant Staphylococcus aureus or methicillin-sensitive Staphylococcus aureus, completed home visits, obtained surveillance cultures from index patients and household members and sampled household environmental surfaces at baseline and three months. The retention of the CPSAC during the trial demonstrated high levels of engagement. CPSAC was highly effective throughout design and execution by troubleshooting recruitment and home visit challenges.

259 IDENTIFYING THE TOP 10 RESEARCH PRIORITIES FOR FAMILY CARERS: THE INTERFACE PROJECT

BackgroundIn assessing the global impact of the COVID-19 pandemic on society, it is important to understand the communities most affected and develop methods of support. Family carers provide a vital, yet often invisible role in our society and healthcare system. Identifying research priorities for carers helps establish overall gaps in the research agenda and increases awareness of the role of carers in the community.MethodsA priority setting partnership methodology was engaged and through collaboration with carers, healthcare professionals and researchers, a participatory process was conducted to identify gaps in the current literature and prioritise research questions and uncertainties. Focus group discussions followed, the first consisted of family carers (n = 5). The second (n = 3) interviewed stakeholders namely healthcare professionals, researchers and policy makers. After collating the data, researchable questions were developed through an iterative process with a Multi Stakeholder Advisory Committee to identify the top 10 research priorities for Family Carers Ireland.ResultsThe top 10 researchable questions were distilled from a list of 16 and fit into 7 broad categories. 1) economic impact and financial strain 2) Systemic issues, education, resources and policy 3) technology 4) support services and infrastructure 5) mental health and wellbeing of the carer 6) carers in society 7) Recognition and acknowledgment of the family carer.ConclusionThe partnership focus of this project allowed the ‘ground-up’ development of research priorities for carers by carers. The COVID-19 pandemic served to magnify systemic issues already present in society, as well as highlight new burdens. As a result, the subsequent development of 10 researchable questions will guide further investigation to improve the support and wellbeing of family carers.

Sexuality-based Stigma and Inclusion Among Southern Protestant Religious Leaders

IntroductionSexuality-based stigma is prevalent in the USA and is, in part, based on religious and gender norms. In the South—compared to other regions—religiosity is more salient, gender norms are more conservative, and sexual and reproductive health (SRH) inequities are more prevalent.MethodsGuided by a stakeholder Advisory Committee, the researchers conducted 20 in-depth interviews with Protestant religious leaders in Georgia from 2018 to 2019 to explore how faith leaders describe sexuality-based stigma, including toward abortion and sexual and gender minorities. Interviews were transcribed and thematically analyzed using team-based, iterative coding.ResultsReligious leaders held a wide range of abortion and sexuality attitudes and norms. Some described traditional judgment around the “sins” of abortion, “homosexuality,” and/or “transgender people” based on Scripture and constructs of the cisgender binary and sexual purity. But the researchers noted tension between that judgment and Christian ideologies of “love” and “all people [being] welcomed…[no] matter who you are.” Several participants provided counter-examples for building supportive and empathic abortion and sexuality norms—including LGBTQ inclusivity—through de-stigmatizing testimony and personal relationships.ConclusionsThere are linkages between abortion stigma and stigma against sexual/gender minorities among Southern religious leaders. However, there is also support for abortion and LGBTQ inclusivity. We assert that assets-based engagement of religious leaders is critical for building effective, inclusive faith-based SRH programming.Policy ImplicationsThese findings demonstrate the need for national, state, and local policies that protect comprehensive sex education, abortion access, and LGBTQ people.

ATA2021ATA2021 Annual Conference & Expo(Virtual*)Tuesdays and Thursdays in June 2021(ABSTRACTS)

ATA2021ATA2021 Annual Conference & Expo(Virtual*)Tuesdays and Thursdays in June 2021(ABSTRACTS)

Modeling the impact of development policies and climate on suburban watershed hydrology near Portland, Oregon

We simulated watershed hydrologic response to land use scenarios representing different sets of policies for suburban development and watershed management in an urbanizing watershed near Portland, Oregon. We asked (1) Can watershed-scale planning and development policies reduce the hydrologic impacts of urbanization? (2) How effective are different policies (including “green” neighborhood design, riparian protection, and representative Low Impact Development (LID) stormwater controls) in maintaining the pre-development hydrologic regime? and (3) Does climate change influence these results? We co-developed 50-year land and water management scenarios with a stakeholder advisory committee and used a spatially-explicit natural and human systems model to evaluate changes in water balance and streamflow characteristics under each scenario. We also used a factorial analysis to explore the influence of individual scenario elements on watershed hydrology. Results indicate that the biggest driver of change for this watershed was the spatial extent of development, followed by the nature of the development pattern, climate, forest harvest, and use of LID controls. Stormwater runoff increased as developed area increased, as did stream discharge for both periods of high and low flow. Increases in evapotranspiration (ET) with climate warming were offset by reductions in ET with development. Designs that condensed development and preserved upland and riparian forest showed the greatest potential for maintaining pre-development water balance and streamflow regimes, thereby reducing impacts of urbanization. These results bridge spatial and temporal scales important to decision-makers, highlighting the importance of considering impacts over time of neighborhood-scale development decisions on watershed-scale hydrology.

Czech National Action Plan for Alzheimer’s Disease and Related Illnesses 2020–2030: First implementation steps

AbstractBackgroundIn 2019, Czechia developed a National Action Plan for Alzheimer’s Disease and Related Illnesses (Plan), which will be implemented during the period 2020–2030. The Plan comprises three parts: a vision, a situational analysis, and proposed recommendations. The proposed recommendations consist of almost fifty activities organized around six strategic aims. Unlike its unsuccessful predecessor for the years 2016–2019, the Plan devotes its very first strategic aim to actions concerning development, monitoring and evaluation of the whole implementation process. These include for instance appointing a national dementia coordinator and an advisory stakeholder committee. The substantive strategic aims of the Plan are: 1) national interdisciplinary guidelines and a stronger network of services, 2) education, 3) dementia awareness and prevention, 4) epidemiology and research, and 5) legal protection.MethodThe goal of this conference contribution is to assess continuity between the development and implementation phase of the Plan by evaluating the completion of activities associated with the procedural strategic aim as well as initiated implementation of all other activities. This assessment is based on tools issued by the World Health Organization including Towards a Dementia Plan: A WHO Guide (World Health Organization, 2018). This guide is intended to assist countries in adapting their health and social care systems in order to accommodate the needs of people with dementia.ResultAs of January 2020, the position of the national dementia coordinator was anchored within the Ministry of Health. The works on an implementation roadmap and a first evaluation conference have been initiated. However, neither the coordinator nor the stakeholder advisory committee have been appointed yet. On the other hand, projects implementing some of the recommended activities such as interdisciplinary guidelines are already in the preparation phase.ConclusionThe Czech National Action Plan for Alzheimer’s Disease and Related Illnesses has transited to its implementation phase.

Addressing Recruitment Challenges in the Engage-HU Trial in Young Children with Sickle Cell Disease

Addressing Recruitment Challenges in the Engage-HU Trial in Young Children with Sickle Cell Disease

Developing and implementing a culturally informed FAmily Motivational Engagement Strategy (FAMES) to increase family engagement in first episode psychosis programs: mixed methods pilot study protocol

IntroductionDespite the proven effectiveness of coordinated specialty care (CSC) programmes for first episode psychosis in the USA, CSC programmes often have low levels of engagement in family psychoeducation, and engagement...

Designing and Evaluating a Prediabetes Shared Decision Aid.

Prediabetes is increasing in prevalence and is associated with risk of developing diabetes, heart disease, stroke, and retinopathy. Clinicians have limited tools to facilitate prediabetes discussions within primary care visits. 1) Develop a Patient and Stakeholder Advisory Committee (PASAC) to design, evaluate, and revise a prediabetes shared decision aid, and 2) evaluate the feasibility and experience of implementing the tool within primary care practice. A prediabetes decision aid (double-sided infographic with decision questions) was created by a PASAC that included patients, primary care clinicians, diabetes educators, endocrinologists, and pharmacists. Five clinicians within 3 primary care practices tested the prediabetes tool with 50 adult patients with prediabetes. Patients completed 2 surveys immediately after the office visit and 6 weeks later. Clinicians and PASAC members completed a postintervention survey. The prediabetes shared decision aid was created through a deliberative process over 3 PASAC meetings. Ninety-six percent of patients felt the tool prepared them to decide on a diabetes prevention plan, and 100% of clinicians would use the tool again and felt the tool did not extend visit length. It was feasible to cocreate a prediabetes shared decision aid within a PASAC and implement the tool within a primary care setting. Patients and clinicians reported a prediabetes discussion, which may mitigate rates of progression to diabetes and associated complications. Future research should evaluate which of the intervention components most effectively promotes discussion of prediabetes within a primary care setting.

A learning community approach to identifying interventions in health systems to reduce colorectal cancer screening disparities.

Although colorectal cancer (CRC) screening in the United States has been increasing, screening rates are not optimal, and there are persistent disparities in CRC screening and mortality, particularly among minority patients. As most CRC screening takes place in primary care, health systems are well-positioned to address this important population health problem. However, most health systems have not actively engaged in identifying and implementing effective evidence-based intervention strategies that can raise CRC screening rates and reduce disparities. Drawing on the Collective Impact Model and the Interactive Systems Framework for Dissemination and Implementation, our project team applied a learning community strategy to help two health systems in southeastern Pennsylvania identify evidence-based CRC screening interventions for primary care patients. Initially, this approach involved activating a coordinating team, steering committee (health system leadership and stakeholder organizations), and patient and stakeholder advisory committee to identify candidate CRC screening intervention strategies. The coordinating team guided the steering committee through a scoping review to identify seven randomized trials that identified interventions that addressed CRC screening disparities. Subsequently, the coordinating team and steering committee applied a screening intervention classification typology to select an intervention strategy that involved using an outreach strategy to provide minority patients with access to both stool blood test and colonoscopy screening. Finally, the coordinating team and steering committee engaged the health system patient and stakeholder advisory committee in planning for intervention implementation, thus taking up the challenge of reducing and important health disparity in patient populations served by the two health systems.

A nonsurgical permanent contraception stakeholder advisory committee: FHI 360's experience

As part of its research program on nonsurgical permanent contraception, FHI 360, a nonprofit human development organization, created a stakeholder advisory committee to help address the controversy surrounding quinacrine. This committee contributed to FHI 360's research agenda, liaised with other stakeholders and provided input on key decisions. This report summarizes the process for establishing the committee, delineates the successes and challenges that arose and specifies recommendations for other organizations considering stakeholder collaboration.

Evaluating the effectiveness of stakeholder advisory committee participation in forest management planning in Ontario, Canada

The study evaluates the success of Ontario's forest SACs (Local Citizens Committees), including public involvement in open houses for forest management planning using a content analysis of third party audits. Evaluations are discussed in terms of five established components of success: conflict resolution among competing interests, building of trust in institutions, incorporating public values into decisions, improving the substantive quality of decisions and informing and educating the public. Also discussed are the four established process components that facilitate success: responsiveness of the lead agency, motivation of participants, quality of deliberation among participants, and degree of public control over the process. The study has four findings. First, audits did not explicitly address components, were inconsistent, and lacked comprehensiveness, reporting on all four evaluative components that facilitate success but only four of five evaluative components of success. Consequently, our ability to determine overall success was highly constrained. Second, despite the constraints, given three of five outcome components were either not achieved, undermined or limited, and that a fourth was mixed, it appears that effectiveness of LCCs during the study period reflects more failure than success. Third, the component most associated with facilitating success, responsiveness of the lead agency, was generally high. Fourth, the key lesson is that the inability to re-frame citizens as integral participants in civic discourse may have been the weakest point in supporting the strong democracy so critical for deliberation between agencies and citizens.

Creating an infrastructure for comparative effectiveness research in emergency medical services.

Emergency medical services (EMS) providers deliver the initial care for millions of people in the United States each year. The Institute of Medicine noted a deficit in research necessary to improve prehospital care, created by the existence of data silos, absence of long-term outcomes, and limited stakeholder engagement in research. This article describes a regional effort to create a high-performing infrastructure in southwestern Pennsylvania addressing these fundamental barriers. Regional EMS records from 33 agencies in January 2011 were linked to hospital-based electronic health records (EHRs) in a single nine-hospital system, with manual review of matches for accuracy. The use of community stakeholder engagement was included to guide scientific inquiry, as well as 2-year follow up for patient-centered outcomes. Local EMS medicine stakeholders emphasized the limits of single-agency EMS research and suggested that studies focus on improving cross-cutting, long-term outcomes. Guided by this input, more than 95% of EMS records (2,675 of 2,800) were linked to hospital-based EHRs. More than 80% of records were linked to 2-year mortality, with more deaths among EMS patients with prehospital hypotension (30.5%) or respiratory distress (19.5%) than chest pain (5.4%) or nonspecific complaints (9.4%). A prehospital comparative effectiveness research infrastructure composed of patient-level EMS data, EHRs at multiple hospitals, long-term outcomes, and community stakeholder perspectives is feasible and may be scalable to larger regions and networks. The lessons learned and barriers identified offer a roadmap to answering community and policy-relevant research questions in prehospital care.