Community Advisory Group Research Articles

The Academy of Breastfeeding Medicine27th Annual International MeetingBaltimore, MarylandSeptember 15–18, 2022

The Academy of Breastfeeding Medicine27^th Annual International MeetingBaltimore, MarylandSeptember 15–18, 2022

Community input in a genomic health implementation program: Perspectives of a community advisory group.

Consumer and community engagement (CCE) in the implementation of genomics into health services and associated research is needed to ensure that changes benefit the affected patients. Queensland Genomics was a program to implement genomics into a public health service. We describe its Community Advisory Group’s (CAG) structure and function and provide recommendations based on the CAG members’ perspectives. The CAG provided advice to the Queensland Genomics program and its projects in an advisory capacity. The CAG was also resourced to develop and lead community-focused activities. Key enablers for CAG included; diversity of CAG members’ skills and experience, adequate resourcing, and the CAG’s ability to self-determine their direction. The CAG experienced limitations due to a lack of mechanisms to implement CCE in the Program’s projects. Here, we provide insights and commentary on this CAG, which will be useful for other initiatives seeking to undertake CCE in genomic research and health care.

Integrating LGBTQIA + Community Member Perspectives into Medical Education

Problem LGBTQIA+ (lesbian, gay, bisexual, transgender, queer, intersex, asexual, and all sexual and gender minorities) people have unique health care needs related to their sexual orientation, gender identity and expression, and sex development. However, medical education has historically excluded LGBTQIA + health-related content in formal curricula. It is common for medical students to interact with diverse patient populations through clinical rotations; however, access to and knowledge about LGBTQIA + patients is inconsistently prioritized in medical schools. This is especially true for LGBTQIA + patients with intersecting historically marginalized identities, such as people of color and people with disabilities. Learning from and listening to medically underserved community members can help both medical students and educators better understand the unique health needs of these communities, and address implicit biases to improve health care and outcomes for their patients. Intervention : To address the lack of LGBTQIA + health-related content in medical education and improve access to and knowledge about LGBTQIA + patients, LGBTQIA + community members’ perspectives and lived experiences were integrated into undergraduate medical education via four primary methods: Community Advisory Groups, community panel events, standardized patients, and community member interviews. Context : LGBTQIA + community members’ perspectives and lived experiences were integrated into medical education at Harvard Medical School (HMS) as part of the HMS Sexual and Gender Minority Health Equity Initiative. Impact : LGBTQIA + community members’ perspectives and lived experiences were successfully integrated into multiple aspects of medical education at HMS. During this process, we navigated challenges in the following areas that can inform similar efforts at other institutions: representation of diverse identities and experiences, meeting and scheduling logistics, structural barriers in institutional processes, and implementation of community member recommendations. Lessons Learned : Based on our experiences, we offer recommendations for integrating LGBTQIA + community members’ perspectives into medical education. Engaging community members and integrating their perspectives into medical education will better enable medical educators at all institutions to teach students about the health care needs of LGBTQIA + communities, and better prepare medical students to provide affirming and effective care to their future patients, particularly those who are LGBTQIA+.

Recruitment, Retention, and Future Direction for a Heart Health Education and Risk Reduction Intervention Led by Community Health Workers in an African American Majority City

Heart disease is a leading cause of death for African Americans. A community-academic partnership cross-trained community health workers to engage African American adults in a 6-month heart health education and risk reduction intervention. We conducted a one-group feasibility study using a one group (pre-posttest) design. A total of 100 adults were recruited from 27 zip codes in an African American majority city through community-based organizations (46%), churches (36%), and home visits (12%). Ninety-six percent were African American; 55% were female, 39% were male, and 6% were transgender. Their mean age was 44.6 years (SD = 15.9). Ninety-two percent had health insurance. Seventy-six percent of participants averaged blood pressure (BP) readings > 130/80 mmHg. Eleven percent of participants had a 30% or higher probability of developing cardiovascular disease in the next 10 years. Six-month follow-up was completed with 96% of participants. There were statistically significant increases in knowledge and in perception of personal risk for heart disease. However, slightly more participants (n = 77, 80.2%) had BP > 130/80 mmHg. The Community Advisory Group recommended expanding the intervention to 12 months and incorporating telehealth with home BP monitoring. Limited intervention duration did not meet longer term objectives such as better control of high BP and sharing risk reduction planning with primary care providers.

Introducing and integrating perinatal mental health screening: Development of an equity-informed evidence-based approach.

Pregnancy is a time of increased risk for developing or re-experiencing mental illness. Perinatal mental health screening for all women is recommended in many national guidelines, but a number of systems-level and individual barriers often hinder policy implementation. These barriers result in missed opportunities for detection and early intervention and are likely to be experienced disproportionately by women from culturally and linguistically diverse backgrounds, including women of refugee backgrounds. The objectives of this study were to develop a theory-informed, evidence-based guide for introducing and integrating perinatal mental health screening across health settings and to synthesize the learnings from an implementation initiative and multisectoral partnership between the Centre of Perinatal Excellence (COPE), and a university-based research centre. COPE is a nongovernmental organization (NGO) commissioned to update the Australian perinatal mental health guidelines, train health professionals and implement digital screening. In this case study, barriers to implementation were prospectively identified and strategies to overcome them were developed. A pilot perinatal screening programme for depression and anxiety with a strong health equity focus was implemented and evaluated at a large public maternity service delivering care to a culturally diverse population of women in metropolitan Melbourne, Australia, including women of refugee background. Strategies that were identified preimplementation and postevaluation were mapped to theoretical frameworks. An implementation guide was developed to support future policy, planning and decision-making by healthcare organizations. Using a behavioural change framework (Capability, Opportunity, Motivation-Behaviour Model), the key barriers, processes and outcomes are described for a real-world example designed to maximize accessibility, feasibility and acceptability. A Programme Logic Model was developed to demonstrate the relationships of the inputs, which included stakeholder consultation, resource development and a digital screening platform, with the outcomes of the programme. A seven-stage implementation guide is presented for use in a range of healthcare settings. These findings describe an equity-informed, evidence-based approach that can be used by healthcare organizations to address common systems and individual-level barriers to implement perinatal depression and anxiety screening guidelines. These results present strategies that were informed by prior research involving patients and staff from a large public antenatal clinic in Melbourne, Australia. This involved interviews with health professionals from the clinic such as midwives, obstetricians, perinatal mental health and refugee health experts and interpreters. Interviews were also conducted with women of refugee background who were attending the clinic for antenatal care. A steering committee was formed to facilitate the implementation of the perinatal mental health screening programme comprising staff from key hospital departments, GP liaison, refugee health and well-being, the NGOCOPE and academic experts in psychology, midwifery, obstetrics and public health. This committee met fortnightly for 2 years to devise strategies to address the barriers, implement and evaluate the programme. A community advisory group was also formed that involved women from eight different countries, some of refugee background, who had recently given birth at the health service. This committee met bimonthly and was instrumental in planning the implementation and evaluation such as recruitment strategies, resources and facilitating an understanding of the cultural complexity of the women participating in the study.

Community voices for health: developing methods of engagement in Somali immigrant communities in the era of COVID-19.

Context: The Somali community in Minnesota has suffered a disproportionate impact of COVID-19. Engaging community members in COVID-19 patient centered outcome related research will be needed to find effective ways to address these disparities. However, COVID-19 disrupted usual methods of community engagement and research is needed to identify how to continue effective engagement. Objective: The Community Voices for Health study explored methods of community engagement and Somali patient and community member priorities for ongoing COVID-19 patient centered research. Study Design: We conducted a survey to engage community members for input on 1) preferred methods of community engagement to ensure broad reach in the community, 2) views on the priorities for COVID-19 related PCOR/CER topics, and 3) views on capacity building needed to support participation in patient centered research projects. Setting or Dataset: 40 Community Ambassadors were recruited to conduct a community-based survey. Population studied: 940 Somali adult patients and community members responded to the survey across the State of Minnesota. 55% identified as female. 77% of participants were born abroad. A range of ages, education levels and household size were represented Results: Survey participants were asked if they had been asked for their input on COVID-19 by any organization or institution and 23% (n=194) indicated they had been asked for their views and 77% (n=653) said they had not. The top three preferred methods of engagement were to participate in engagement by phone (n=533), text message (n=367) and socially distanced in person (n=227). Survey participants were provided with a list of 14 different topics relating to COVID-19, which were identified in collaboration with a Community Advisory Group. The top three topics considered a priority for future research in relation to COVID-19 were the care provided to Somali patients with COVID-19, ways to encourage prevention of COVID-19 and experiences of racism in the health system in seeking help for COVID-19 Conclusions: The Somali community in Minnesota is very engaged and keen to participate in community engagement when it is presented in a culturally relevant, trusted way. The survey was able to use methods that supported a reach across the state of Minnesota and is one of the most comprehensive engagement efforts conducted with the Somali community in Minnesota on any topic.

Community Engagement in Cutaneous Leishmaniasis Research in Brazil, Ethiopia, and Sri Lanka: A Decolonial Approach for Global Health.

Cutaneous leishmaniasis (CL) is a parasitic skin disease endemic in at least 88 countries where it presents an urgent, albeit often “neglected” public health problem. In this paper, we discuss our model of decolonial community engagement in the ECLIPSE global health research program, which aims to improve physical and mental health outcomes for people with CL. The ECLIPSE program has four interlinked phases and underpinning each of these phases is sustained and robust community engagement and involvement that guides and informs all activities in ECLIPSE. Our decolonial approach implies that the model for community engagement will be different in Brazil, Ethiopia and Sri Lanka. Indeed, we adopt a critical anthropological approach to engaging with community members and it is precisely this approach we evaluate in this paper. The data and material we draw on were collected through qualitative research methods during community engagement activities. We established 13 Community Advisory Groups (CAGs): in Brazil (n = 4), Ethiopia (n = 6), and Sri Lanka (n = 3). We identified four overarching themes during a thematic analysis of the data set: (1) Establishing community advisory groups, (2) CAG membership and community representation, (3) Culturally appropriate and context-bespoke engagement, and (4) Relationships between researchers and community members. During our first period of ECLIPSE community engagement, we have debunked myths (for instance about communities being “disempowered”), critiqued our own practices (changing approaches in bringing together CAG members) and celebrated successes (notably fruitful online engagement during a challenging COVID-19 pandemic context). Our evaluation revealed a gap between the exemplary community engagement frameworks available in the literature and the messy, everyday reality of working in communities. In the ECLIPSE program, we have translated ideal(istic) principles espoused by such community engagement guidance into the practical realities of “doing engagement” in low-resourced communities. Our community engagement was underpinned by such ideal principles, but adapted to local sociocultural contexts, working within certain funding and regulatory constraints imposed on researchers. We conclude with a set of lessons learned and recommendations for the conduct of decolonial community engagement in global health research.

Elevating Married Adolescents' Voices for Responsive Reproductive Healthcare in Syria.

Increases in early marriage and pregnancy resulting from Syria's humanitarian crisis highlight a critical gap in adolescents' access to life-saving sexual and reproductive health information and services, and a larger need for adolescent-specific interventions grounded in gender transformative approaches. Seeking to address this, CARE, UNFPA and Syria Relief and Development adapted global evidence-based approaches to humanitarian contexts to create the Adolescent Mothers Against all Odds (AMAL) Initiative for pregnant girls and first-time mothers aged 10 to 18 years. Designed to improve the lives of young girls through responsive health systems and enabling environments, AMAL includes three components: a Young Mothers Club for first-time mothers and pregnant girls, participatory dialogues with health providers, and reflective dialogues with girls' marital family and community members. The AMAL Initiative intends to ensure responsiveness to the unique vulnerabilities of adolescent sub-groups by co-implementing with them. Select girls undergo additional leadership training and serve as adolescent representatives on community advisory groups sharing feedback for program improvement. One hundred-four first-time mothers and pregnant girls, 219 community members, and 120 health providers participated in AMAL in northwest Syria. In a mixed methods evaluation, facilitators administered monitoring tools to identify program improvements, pre-post surveys to assess outcomes, and end-line discussions to gather perceptions of impact. Girls reported a 47% overall increase in self-esteem, confidence, health-seeking capacity, and communication ability. Community support for girls' use of family planning increased by 27% and girls' equal access to services by 35%. Findings across all participant groups demonstrate decreased expectations of early marriage and increased acceptance of family planning post-marriage. Areas that participants cited for potential improvement included programming for girls/women above the age of 18 years, and additional training for health providers on long-acting contraceptive methods. These results show that participatory adolescent-centered sexual and reproductive health programming is not only feasible in crisis settings but can improve the self-efficacy of vulnerable adolescents to overcome barriers to accessing healthcare and improving well-being. The AMAL Initiative is now being scaled up through local partners in Syria and piloted in northern Nigeria.

Women with hepatitis B: how mothers with chronic hepatitis B understand and experience the prevention of mother-to-child transmission interventions in Victoria, Australia.

Mother-to-child transmission (MTCT) of hepatitis B can be prevented with targeted interventions; however, MTCT continues to occur in Australia and globally. This qualitative research investigated how mothers with chronic hepatitis B (CHB) understand and experience interventions for the prevention of MTCT of CHB (PMTCT-CHB) in Victoria, Australia. Semi-structured interviews were conducted with women with CHB. Participants were recruited through purposive and snowballing sampling. Interviews explored the women's experience of care for themselves and their infants aimed at PMTCT-CHB. Interviews were conducted over the phone with a qualified interpreter where required. The consolidated criteria for reporting qualitative research framework was used with data thematically analysed. This study was co-designed with mothers with CHB through a Community Advisory Group established for this research; coordinated and supported by LiverWELL and the researchers. Sixteen women were interviewed. Although most women understood the purpose of hepatitis B vaccination, there were significant gaps in information and education provided to mothers regarding PMTCT-CHB. These gaps included understanding of the extent of protection of vaccination, breastfeeding with CHB, post-vaccination testing for infants and lack of clarity of the woman's own hepatitis B status. There was notable fear and worry associated with hepatitis B transmission, with emotional support for mothers identified as a major gap in service delivery. Additionally, some women experienced stigma and discrimination due to their hepatitis B and refugee status. This study explored how mothers with CHB understand and experience interventions to prevent MTCT. Our findings reveal substantial gaps in delivery of information and care in the context of PMTCT-CHB in Victoria. Our findings can support development of evidence-based interventions and systems to improve healthcare for mothers with CHB and their infants, and thereby reduce possible CHB transmission and other negative outcomes, including stigma and discrimination.

Launching the Living Alone With Cognitive Impairment (LACI) Project: Bridging Research and Policy

The Living Alone with Cognitive Impairment (LACI) Project bridges research and policy to develop policy recommendations to address the needs of people living alone with cognitive impairment (PLACI) through new expansions of long-term services and supports. There are an estimated 4.3 million PLACI in the United States. Access to formal LTSS is critical to them because they lack cohabitants to assist with activities of daily living and navigating LTSS, especially during the COVID-19 pandemic. To bridge research with policy, seventeen Policy Advisory Group (PAG) members were recruited, including representatives from state and local government, and LTSS policy experts. Between November 2020-January 2021, a total of 17 individual meetings were conducted with PAG members and one webinar convening of the group. The PAG identified preliminary recommendations in three areas, including: 1) important areas of inquiry for qualitative and quantitative research, 2) best practices for addressing equity across diverse racial/ethnic minority groups, and 3) preliminary policy recommendations that leverage existing innovations. The LACI Project team is actively incorporating the PAG feedback by: a) modifying research questions for the quantitative and qualitative research, b) convening a diverse Community Advisory Group, and c) crafting preliminary policy recommendations based on PAG input. To conclude, engaging the expertise of the PAG to develop policy recommendations to increase LTSS for PLACI is a promising method of bridging research and policy. The engagement of policy experts ensures that fore-coming research is designed to address the most important policy gaps and all policy recommendations are actionable and timely.

848. Approaches to Optimize Recruitment of Historically Underrepresented Black and Hispanic/LatinX MSM, Transgender, and Gender Non-binary Individuals into the Lenacapavir for PrEP (PURPOSE 2) Trial

BackgroundBlack and Hispanic/Latinx gay and other men who have sex with men (MSM), transgender women (TGW), transgender men (TGM), and gender nonbinary individuals (GNB) have been historically underrepresented in HIV prevention trials despite being disproportionately affected by the disease. Therefore, studies of pre-exposure prophylaxis (PrEP), a highly effective intervention for reducing HIV incidence, should include these individuals, and doing so would promote generalizability of the findings.MethodsPURPOSE 2 (GS-US-528-9023) will evaluate a twice-yearly long-acting subcutaneous, first in class capsid inhibitor, lenacapavir, for PrEP in MSM, TGW, TGM, and GNB in the US, Brazil, Peru, and South Africa. The study team adopted a multifactorial approach to address historic underrepresentation. This included a literature review to assess successful evidence-based approaches for increasing enrollment of Black and Hispanic/ LatinX MSM, TG, and GNB individuals. We engaged with community and patient advocates as well as key stakeholders to solicit feedback prior to protocol development.ResultsWe established a trial-specific Global Community Advisory Group and implemented their recommendations for site selection, investigator and staff diversity, and strong linkage with community-based organizations. We recruited new community-based research sites and principal investigators (PIs) to mirror historically underrepresented populations and emphasized mentorship of junior sub-Is by seasoned PIs to support enrollment and retention. We developed required trainings for all study and site staff on good participatory practices for PrEP, anti-racism and transgender cultural humility. We established recruitment goals of 50% Black and 20% Hispanic/LatinX MSM in the US, and 20% TGW study-wide. Our strategy to ensure achievement of these overall goals involves nuanced site-specific recruitment goals considering site capacity, local demographics, and HIV incidence data. We will review metrics weekly during enrollment and make any necessary adjustments. ConclusionUsing novel approaches, we have carefully chosen with whom, where, and how we will collaborate to increase the diversity, equity, and inclusion in the PURPOSE 2 trial.Disclosures Michelle Cespedes, MD, MS, Gilead Sciences Inc. (Scientific Research Study Investigator, Advisor or Review Panel member, Research Grant or Support)GlaxoSmithKline (Scientific Research Study Investigator, Research Grant or Support) Jill Blumenthal, MD, Gilead Sciences (Grant/Research Support, Scientific Research Study Investigator) Karam Mounzer, MD, Epividian (Advisor or Review Panel member)Gilead Sciences Inc. (Consultant, Scientific Research Study Investigator, Research Grant or Support, Speaker’s Bureau)Janssen (Consultant, Research Grant or Support, Speaker’s Bureau)Merck (Research Grant or Support, Speaker’s Bureau)ViiV Healthcare (Consultant, Speaker’s Bureau) Moti Ramgopal, MD FACP FIDSA, Abbvie (Scientific Research Study Investigator, Speaker’s Bureau)Gilead (Consultant, Scientific Research Study Investigator, Speaker’s Bureau)Janssen (Consultant, Scientific Research Study Investigator, Research Grant or Support, Speaker’s Bureau)Merck (Consultant, Scientific Research Study Investigator)ViiV (Consultant, Scientific Research Study Investigator, Speaker’s Bureau) Ayana Elliott, DNP, APRN, FNP-C, NEA-BC, Gilead Sciences Inc. (Employee, Shareholder) A.C. Demidont, MD, Gilead Sciences Inc. (Employee, Shareholder) C. Chauncey Watson, MD, Gilead Sciences Inc. (Employee, Shareholder) Christoph C. Carter, MD, Gilead Sciences Inc. (Employee, Shareholder) Alex Kintu, MD, ScD, Gilead Sciences Inc. (Employee, Shareholder) Moupali Das, MD, Gilead Sciences Inc. (Employee, Shareholder) Jared Baeten, MD, PHD, Gilead Sciences Inc. (Employee, Shareholder) Onyema Ogbuagu, MD, Gilead Sciences Inc. (Scientific Research Study Investigator, Advisor or Review Panel member, Research Grant or Support, Other Financial or Material Support)ViiV Healthcare (Advisor or Review Panel member)

Development of an indigenous functional assessment (IFA) tool

AbstractBackgroundFunctional decline is an essential criterion for the clinical diagnosis of dementia. Functional decline is assessed by activities of daily living, which consist of Basic Activities of Daily Living (BADL) and Instrumental Activities of Daily Living (IADL). IADL (e.g., cooking, taking medications, handling finances) is more complex as it requires multiple cognitive processes whereas BADL (e.g., bathing, dressing and toileting) can be performed with the support of habits and routines. IADL are more likely to be vulnerable to the early effects of cognitive decline, thus being the first indication of cognitive deterioration. Various functional assessment tools are available to assess instrumental activities of daily living; however, there is no culturally appropriate functional assessment tool for the Indigenous population. As activities of daily living differ across cultures, the tool developed to assess activities of daily living in one culture cannot assess it in another culture. Also, the existing IADLs are influenced by gender and socio‐cultural factors. Thus, we aim to develop a culturally‐grounded functional assessment tool to be used in Indigenous communities.MethodThe study will use a community‐based participatory approach to develop a functional assessment tool. An Indigenous community advisory group will be engaged in the research process. A focus group will be conducted with the Indigenous and non‐Indigenous health service providers working with Indigenous communities and in‐depth interviews with the care partner. The qualitative data on the perspectives, personal and professional experiences of health service providers, and the care partner's lived experiences will be analyzed using community‐engaged thematic analysis with the community advisory group's volunteer. The developed tool will undergo several iterative processes from experts and community advisory groups to reach a consensus on the final tool.ResultWe are establishing relationships with the Indigenous communities as a partner which is an initial step of conducting research in an Indigenous way. The community advisory group formed through this relationship will be engaged meaningfully in every research process step.ConclusionThis tool will be the first to be designed with and for the Indigenous care partners in Canada, which will promote a culturally safe assessment environment for diagnosis of dementia.

Randomised clinical trial research within Aboriginal and Torres Strait Islander primary health services: a qualitative study

ObjectiveTo better understand how to undertake valuable, ethical and sustainable randomised controlled clinical trial (RCT) research within Aboriginal and Torres Strait Islander primary health services.DesignIn a qualitative approach, we utilised...

The Living Alone with Cognitive Impairment (LACI) project: Bridging research and policy to expand long‐term services and supports

AbstractBackgroundThere are an estimated 4.3 million people living alone with cognitive impairment (PLACI) in the United States. The COVID‐19 pandemic and the isolation incurred by shelter‐in‐place has likely exacerbated cognitive impairment in older adults who live alone. Access to formal long‐term services and supports (LTSS) is critical to this population because they lack cohabitants to assist with activities of daily living and navigating LTSS. The Living Alone with Cognitive Impairment (LACI) Project seeks to bridge research and policy to develop actionable and timely policy recommendations to address the needs of PLACI through new expansions of LTSS.MethodSeventeen Policy Advisory Group (PAG) members were recruited, including representatives from state and local government, dementia and aging advocacy organizations, LTSS providers, and LTSS policy experts. A total of 17 individual meetings were conducted with PAG members and one webinar convening of the group.ResultThe PAG identified preliminary recommendations in three areas, including: 1) important areas of inquiry for qualitative and quantitative research to address the needs of PLACI, 2) best practices for addressing equity across diverse racial/ethnic minority groups, and 3) preliminary policy recommendations that leverage existing innovations at the state and federal level. The LACI Project team is actively incorporating the PAG feedback by: a) modifying research questions for the quantitative and qualitative research, b) convening a Community Advisory Group to ensure that the research is guided by diverse community members, and c) crafting preliminary policy recommendations based on PAG input.ConclusionEngaging the expertise of an advisory group to develop policy recommendations to increase LTSS for PLACI is a promising method of bridging research and policy. The engagement of policy experts ensures by ensuring that research is designed to address the most important policy gaps and all policy recommendations are actionable and timely.

Parents Taking Action: Adapting a Peer-to-Peer Program for Parents Raising Black Children With Autism

Abstract We report on the adaptation and delivery of a peer-led, 14-session manualized program, Parents Taking Action, among parents raising Black children with autism in low-income neighborhoods. We engaged a community advisory group made up of parents and grandparents of Black children with autism, a Black self-advocate, clinicians, and other stakeholders to culturally adapt the intervention. Three Parent Leaders delivered the program to seven Black mothers of children with autism. We collected and analyzed quantitative and qualitative data on intervention implementation. Our study revealed key participation barriers and facilitators facing families of Black children with autism, particularly financial and other material burdens, which can inform efforts to better serve parents experiencing the effects of poverty and racism.

Collaborative Research: Partnering with the community to improve the science and its impact

BACKGROUND AND AIM: The Michigan PBB Research Registry consists of ~7,000 people exposed to polybrominated biphenyls (PBB) following its accidental introduction into Michigan’s animal feed. After nearly forty years, the PBB Registry was transferred to Emory University, allowing the research team to engage this community. METHODS: Community engagement (CE) activities were initiated with goals of disseminating research findings to those affected, responding to educational needs, incorporating community input, and facilitating research participation. CE methods include community meetings, where research results are shared with the affected community and questions/concerns are addressed and documented. At the first community meeting, we asked for volunteers for the Citizens Advisory Board (CAB) to guide us in research and engagement efforts. The CAB joined forces with the Pine River Superfund Citizen Task Force, a community advisory group focused on the remediation of the Superfund sites left from the PBB manufacturer, and the Mid-Michigan District Health Department. RESULTS:These efforts have evolved into a community-research partnership, where the community identified research questions, helped develop the research approach, and is an integral part of research decision-making. This partnership has led to significant changes in outreach activities, research protocols, and research priorities: community health concerns were added to surveys, the age range for participation was expanded, and chemical workers/family who were removed from the Registry (1990s) due to multiple exposures were re-enrolled with exposome methods to evaluate their complex exposures. Community concerns regarding multi-generational effects and continued high-levels of PBB body burden led to a multi-generational epigenetics study, a clinical trial aimed at accelerating PBB elimination, and an oral history study documenting the lived experience of those affected using qualitative methods. This work will be translated in an online continuing medical education course for healthcare providers. CONCLUSIONS:The community-research partnership has enhanced the science and its relevancy and potential benefit to the impacted community. KEYWORDS: Community-engaged research, science communication, exposome, environmental epidemiology, environmental justice

How societal expectations, new digital tools, andthe COVID crisis are driving a step-change in human centric remediation.

How societal expectations, new digital tools, andthe COVID crisis are driving a step-change in human centric remediation.

Long-term consumer involvement in cancer research: Working towards partnership.

BackgroundMeaningful consumer involvement in health research is important. There are limited data on how to maintain long‐term consumer involvement.ObjectiveTo identify barriers and facilitators to meaningful long‐term consumer involvement in research.DesignSix semi‐structured interviews were conducted with members of the Primary Care Collaborative Cancer Clinical Trials Group (PC4) Community Advisory Group (CAG) and included the review of 40 supporting documents. Interviews and documents were analysed using inductive thematic analysis; the themes were mapped onto the domains of Cancer Australia's National Framework for Consumer Involvement in Cancer Control.ResultsEquality, respect and feeling valued were facilitators to long‐term involvement. These elements were part of an overarching theme of organizational commitment. Creating balance, managing competing deadlines and integrating a consumer role with a personal life were key barriers to involvement. These themes mapped strongly to the National Framework for Consumer Involvement in Cancer Control domains of committed organizations, capable consumers, inclusive groups and shared focus.ConclusionResearch networks should reflect on several factors to maintain long‐term consumer involvement. Networks should aim to build a meaningful relationship, using clear communication and education, that reinforces the value and scope of a consumers contributions. We found that consumer education needs do not diminish over time and adequate skill development, support and feedback need to be on‐going. Creating regular opportunities for feedback and reflection are important to continue to meet best practice guidelines.

Adaptation of a gender-transformative sexual and reproductive health intervention for adolescent boys in South Africa and Lesotho using intervention mapping

ABSTRACT Background: Rates of adolescent HIV and unintended pregnancy in southern Africa are amongst the highest in the world. Gender-transformative interventions that address underlying gender inequalities and engage both males and females have been emphasised by the World Health Organisation, amongst others, to target prevention. However, few such gender-transformative interventions have been rigorously developed or evaluated. Objective: To expedite potential impact and reduce development costs, we conducted a needs assessment to inform the co-design, in consultation with local stakeholders, of adapted versions of an existing gender-transformative Relationships and Sexuality Education intervention for use in South Africa and Lesotho. Methods: Adaptation of the intervention was guided by a modified version of Intervention Mapping (IM). This process involved consultation with separate adolescent, community and expert advisory groups and a collaboratively conducted needs assessment, which drew on focus groups with adolescents (8 groups, n = 55) and adults (4 groups, n = 22) in South Africa and Lesotho, and was informed by our systematic review of the literature on the determinants of condom use among adolescents in the region. Results: The findings clarified how the intervention should be adapted, which individual- and environmental-level determinants of condom use to target, and actions for facilitating successful adoption, evaluation and implementation in the new settings. Conclusions: The IM approach allows for a systematic appraisal of whether components and processes of an existing intervention are appropriate for a new target population before costly evaluation studies are conducted. The findings will be of interest to those wishing to rigourously develop and evaluate gender-transformative interventions engaging men to improve health for all.

Shining Light and Creating Solutions: Health and Social Needs of Older Affordable Housing Residents

Aging within a community requires access to health and social services. This project lays the groundwork for an innovative, three-part health and social services intervention intended to improve the health and well-being of older affordable housing residents in a low-income, vulnerable Baltimore neighborhood. We will report on the first part, an assessment of residents’ unmet health and social service needs and their ideas for meeting these needs. With guidance from a community advisory group of older residents (a key program component), we are conducting structured interviews with 50 elders to identify residents’ needs and interests. These findings will inform the next project segments: Part 2- exploring how the Village model (in which neighbors identify and offer needed services to help their neighbors age within a community) can be adapted for an affordable housing setting, and Part 3- adapting an evidence-based housing-plus-services model to meet older residents’ unmet needs.