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The development of the Bronx Community Research Review Board: a pilot feasibility project for a model of community consultation.

ABSTRACT: The Bronx Community Research Review Board (BxCRRB) is a community-academic partnership (CAP) between the Albert Einstein College of Medicine and The Bronx Health Link (BHL). Rather than asking clinical investigators to create their own individual process de novo, we have developed an innovative, structural approach to achieve community consultation in research planning, implementation, and dissemination that involves and educates the public about research.To collaboratively develop (1) an independent research review board of volunteer community residents and repre sentatives that tests a model of community consultation, dialogue, and "community-informed consent" by reviewing community-based research proposals; and (2) to increased understanding of and participation in clinical research in the Bronx.(1) Recruiting members from the Health and Human Services committees of community boards, focus groups, and community health events; (2) interviewing and selecting members based on community involvement, experiences, availability, and demographics of the Bronx; (3) training members in bioethics and research methods; and (4) facilitating meetings and discussions between clinical researchers and the BxCRRB for research review and consultation.There is substantial interest among Bronx residents in participating in the BxCRRB. The BxCRRB provided feedback to researchers to ensure the protection of participants' rights, to improve research design by promoting increased accountability to the community, and expanded its scope to include earlier stages of the research process.The BxCRRB is a viable model for community consultation in research, but more time for implementation and evolution is needed to improve its review practices and ensure community input at all stages of the research process.

SUBMITTER: Martin del Campo F

PROVIDER: S-EPMC4795445 | biostudies-literature | 2013

REPOSITORIES: biostudies-literature

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The development of the Bronx Community Research Review Board: a pilot feasibility project for a model of community consultation.

Martin del Campo Francisco F Casado Joann J Spencer Paulette P Strelnick Hal H

Progress in community health partnerships : research, education, and action 20130101 3

<h4>Background</h4>The Bronx Community Research Review Board (BxCRRB) is a community-academic partnership (CAP) between the Albert Einstein College of Medicine and The Bronx Health Link (BHL). Rather than asking clinical investigators to create their own individual process de novo, we have developed an innovative, structural approach to achieve community consultation in research planning, implementation, and dissemination that involves and educates the public about research.<h4>Objectives</h4>To ...[more]

PMID: 24056516

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Project description:Background/aimsCommunity engagement is widely acknowledged as an important step in clinical trials. One underexplored method for engagement in clinical trials is crowdsourcing. Crowdsourcing involves having community members attempt to solve a problem and then publicly sharing innovative solutions. We designed and conducted a pilot using a crowdsourcing approach to obtain community feedback on an HIV clinical trial, called the Acceptability of Combined Community Engagement Strategies Study. In this work, we describe and assess the Acceptability of Combined Community Engagement Strategies Study's crowdsourcing activities in order to examine the opportunities of crowdsourcing as a clinical trial community engagement strategy.MethodsThe crowdsourcing engagement activities involved in the Acceptability of Combined Community Engagement Strategies Study were conducted in the context of a phase 1 HIV antibody trial (ClinicalTrials.gov identifier: NCT03803605). We designed a series of crowdsourcing activities to collect feedback on three aspects of this clinical trial: the informed consent process, the experience of participating in the trial, and fairness/reciprocity in HIV clinical trials. All crowdsourcing activities were open to members of the general public 18 years of age or older, and participation was solicited from the local community. A group discussion was held with representatives of the clinical trial team to obtain feedback on the utility of crowdsourcing as a community engagement strategy for informing future clinical trials.ResultsCrowdsourcing activities made use of innovative tools and a combination of in-person and online participation opportunities to engage community members in the clinical trial feedback process. Community feedback on informed consent was collected by transforming the clinical trial's informed consent form into a series of interactive video modules, which were screened at an open public discussion. Feedback on the experience of trial participation involved designing three fictional vignettes which were then transformed into animated videos and screened at an open public discussion. Finally, feedback on fairness/reciprocity in HIV clinical trials was collected using a crowdsourcing idea contest with online and in-person submission opportunities. Our public discussion events were attended by 38 participants in total; our idea contest received 43 submissions (27 in-person, 16 online). Facebook and Twitter metrics demonstrated substantial engagement in the project. The clinical team found crowdsourcing primarily useful for enhancing informed consent and trial recruitment.ConclusionThere is sufficient lay community interest in open calls for feedback on the design and conduct of clinical trials, making crowdsourcing both a novel and feasible engagement strategy. Clinical trial researchers are encouraged to consider the opportunities of implementing crowdsourcing to inform trial processes from a community perspective.

Project description:OBJECTIVE:To determine the feasibility of a Community-Based Participatory Tobacco Dependence Strategy (PROMPT) in the inner city population of Ottawa (Canada). DESIGN:A feasibility mixed methods prospective cohort study following principles of community-based participatory action research. INTERVENTION:Recruited 80 people whouse drugs, followed them for 6?months while providing access to counselling, nicotine replacement therapy and peer-support in a community setting. SETTING:Community research office in downtown Ottawa, adjacent to low-income housing, shelter services and street-based drug consumption. PRIMARY OUTCOME:Retention rate at 6-month follow-up. SECONDARY OUTCOME:Biochemically validated 7-day point prevalence smoking abstinence at 26 weeks, self-reported abstinence in the past 7 days with exhaled carbon monoxide ?10?ppm. RESULTS:The average age of participants was 43.8 years. The 6-month follow-up rate was 42.5%. The mean number of smoking years reported was 27.3 years. The participants were 70% male, 33.7% reported less than a high-school education, 21% identified as indigenous and 43.8% reported an income between US$1000 and US$1999 per month. The baseline mean daily cigarette use was 20.5 and 9.3 cigarettes at study end, with mean reduction of 11.2 cigarettes at 6?months (P=0.0001). There was a considerable reduction in self-reported illicit substance use (18.8%), including a reduction in the opioids heroin (6.3%), fentanyl (2.6%) and Oxycontin (3.8%). The study findings also reveal psycho-socioeconomic benefits such as improved health, return to work and greater community engagement. CONCLUSIONS:The PROMPT project describes socioeconomic variables associated with tobacco and polysubstance use. A programme focused on tobacco dependence, easily accessible in the community and led by community peers with lived experience is feasible to implement and has the potential to support positive life changes. PROMPT's patient engagement model is an effective harm-reduction strategy for the growing opioid use crisis and can improve the health outcomes of marginalised at-risk populations worldwide.

Project description:Background:This article presents the results of a community consultation (CC) process completed in Toronto, Ontario, using a random digit dialling technique, on the attitudes and perceptions of the public toward the use of exception from informed consent when conducting emergency research involving the use of massive blood transfusions. Methods:In 2012, our hospital conducted a CC, using a random digit dialling technique, to elicit the attitudes and perceptions of the public toward the use of an exemption from informed consent for an upcoming clinical trial. A total of 500 participants from high violent crime areas were interviewed as part of this consultation. Results:The response rate for the telephone survey was 54%. Participants indicated a personal acceptance rate of 76%, acceptance of the justification for the exception to consent at 81%, thatthe study would meet the best interest of patients and the community at 81% and that youth (between 15 and 18 years) could be enrolled at 71%. When offered, no participant requested an opt-out wrist band to avoid being enrolled in this study. Discussion:The use of violent crime neighborhoods to locate at risk communities was not effective in identifying the appropriate community of interest for this study. Though only representing a small subpopulation from a large Canadian city, the attitudes noted here is suggestive that Canadians may have a similar level of acceptance as the US based on published studies. However, given the resources needed to undertake this process and that in the end it did not elicit any useful feedback or recommendations for enhancing the safety of participants, the future use of phone surveys as a means of engaging communities should be reconsidered. Level of evidence Level V:This is a retrospective subanalysis of a CC using a randomized phone dialling technique from a site prior to the start of the Pragmatic Randomized Optimal Platelet and Plasma Ratios Trial. The CC was not designed specifically for research purposes and as such reflect only a case study from a single center. Trial registration number:Pre-result, NCT01545232.

Project description:The National Institutes of Health (NIH) established the Building University Infrastructure Leading to Diversity (BUILD) initiative to increase engagement and retention of undergraduates from diverse backgrounds in biomedical research. Portland State University, in partnership with ten other academic institutions, received a BUILD award and developed the BUILD EXITO (Enhancing Cross-Disciplinary Infrastructure and Training at Oregon) project. The EXITO program offers a three-year research and mentorship experience for undergraduates in biomedical, behavioral, social science, clinical, and bioengineering disciplines. The BUILD initiative also emphasizes enhancing research capacity and infrastructure through institutional change and faculty development. A key piece of EXITO's program to enhance research capacity is offering faculty an opportunity to apply for up to $50,000 of funding to carry out a one-year pilot study. We conducted two separate RFAs for this purpose, closely modeled on NIH's Small Grant Program (R03), over two years. Principal Investigators of pilot projects were encouraged to include EXITO students, or other undergraduate students, on their research teams. Students then worked on these research projects as part of EXITO's intensive mentored research program. This paper reports on methods to conduct and implement a pilot project program intended to train primarily junior faculty members to write and submit an NIH proposal and fund successful applicants to gather pilot project data to aid in applying for future proposals. We provided a step-by-step rigorous submission and review process. We provided proposal writing and revising workshops, technical support, and helped pilot project Principal Investigators (PIs) with biosketches, IRB applications, IUCUC documents, budgets, and other proposal sections. We secured at least three external (not at any BUILD EXITO institution) reviewers for each proposal. PIs revised proposals before resubmitting and receiving their final scores. Across two RFAs, we provided funds twenty PIs to conduct pilot projects; these projects included at least 21 students working on them who received mentoring in research methods and in disseminating results. This paper describes important lessons learned, including the importance of: allotting sufficient time to recruit reviewers; recruiting reviewers through a variety of sources and methods; and assisting PIs in engaging with research administration staff at Portland State University and partner institutions. Challenges included: finding an optimal timeline that was neither too compressed nor too stretched out; encouraging applicants from distant partner institutions to apply and keeping them engaged and retained through the entire process; and assisting PIs from partner institutions to efficiently utilize Portland State University's sponsored projects department if similar resources were not available at their home institutions. Our goal is to provide guidance and insights to faculty and research-administration staff at other institutions interested in replicating or adapting EXITO's program to enhance institutional research capacity.

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The development of the Bronx Community Research Review Board: a pilot feasibility project for a model of community consultation.

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The development of the Bronx Community Research Review Board: a pilot feasibility project for a model of community consultation.

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