scholarly journals Evaluation of 3 approaches for increasing patient engagement in clinical research: Feedback from a community engagement advisory board

2018 ◽  
Vol 2 (1) ◽  
pp. 14-19 ◽  
Author(s):  
Alicia K. Matthews ◽  
Kevin Rak ◽  
Emily Anderson ◽  
Amparo Castillo ◽  
Raymond Ruiz ◽  
...  
Keyword(s):  
Clinical Research ◽  
Community Engagement ◽  
Survey Data ◽  
Research Participation ◽  
Advisory Board ◽  
Community Advisory Board ◽  
Board Members ◽  
Patient Portals ◽  
Patient Registries ◽  
Advantages And Disadvantages

IntroductionThe purpose of this study was to obtain feedback from a diverse group of community advisory board members about different clinic or hospital-based approaches to increasing research participation.MethodsMembers of an established community engagement advisory board (n=16) provided qualitative and survey data regarding attitudes and preferences for 3 hospital and clinic system strategies to recruit patients into clinical research including universal consent for research, patient registries, and patient portals.ResultsOverall, there was moderate support for each of the 3 approaches discussed. Board members described advantages and disadvantages of each method. Based on the qualitative data, universal consent was viewed as the best strategy for consenting high volumes of patients for research. However, patient registries and portals were seen as more acceptable, less-intrusive and more likely to result in higher participation rates. Survey data were consistent with qualitative findings.ConclusionsInput from community stakeholders is needed to identify strategies to enhance participation and increase diversity in clinical research. Members of our CEAB identified patient registries and portals as feasible and nonintrusive approaches to increasing research participation. Additional research is needed to confirm these findings and to establish best practices for supporting patients in using registry approaches.

scholarly journals 3392 Tapping into Community Insight and Lived Experience to Inform, Guide and Direct Translational Science Initiatives

2019 ◽  
Vol 3 (s1) ◽  
pp. 95-95
Author(s):  
Miles McNeeley ◽  
Katrina Kubicek ◽  
Lourdes Baezconde-Garbanati ◽  
Karen D. Lincoln ◽  
Michele Kipke
Keyword(s):  
African American ◽  
Los Angeles ◽  
Clinical Research ◽  
Community Engagement ◽  
Community Advisory Board ◽  
Translational Science ◽  
Community Members ◽  
Black African ◽  
African American Communities ◽  
Community Input

OBJECTIVES/SPECIFIC AIMS: This study aims to describe adaptability in methods used to apply community input to programming within the field of translational science. The outcomes of community informed programming include opportunities for innovative projects and approaches, and better responsiveness to community needs. It is anticipated that this will result in greater community involvement in research, moving towards greater health equity. METHODS/STUDY POPULATION: The SC CTSI is situated in urban Los Angeles, one of the most diverse communities in the world. Eight SC CTSI Community Engagement Core initiatives that employ community partnership are illustrated. The activities include social marketing campaigns for cervical cancer prevention; use of community-embedded research ambassadors to increase scientific literacy in Latino and Black/African-American communities; use of innovative technologies to educate pediatric patients and families about clinical research; working with the entertainment industry to promote clinical research in popular television shows; a community advisory board that is tailored and embedded in each CSTA core group; a community based research dissemination program; an ad-hoc community advisory group assembled to adapt a research 101 curriculum for Black/African-American communities; and a series of listening sessions conducted throughout Los Angeles. RESULTS/ANTICIPATED RESULTS: Integration of community voices provide direction for future planning, programming and execution of all referenced initiatives. Ultimately, the goal for these discussions with community members is to develop innovative approaches to CTSA programming. DISCUSSION/SIGNIFICANCE OF IMPACT: Racial and ethnic minorities continue to experience underrepresentation in clinical research trials. CTSAs have been tasked with addressing barriers that have historically led to disparities in research participation, and by extension, the effectiveness of medical interventions in diverse populations. Community input is an invaluable source for knowledge and innovative ideas in how to increase involvement in various aspects of the research process, including dissemination, recruitment and enrollment in clinical trials. CTSAs have increasingly augmented Community Engagement programs within their respective cores to address population disparities. The approaches used to engage communities require an element of fluidity and flexibility, and a reliance on the input of community members, in order to maintain relevant and desired community engagement practices.

scholarly journals Building and Sustaining a Community Advisory Board of African American Older Adults for Volunteer Research

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 844-844
Author(s):  
Jamie Mitchell ◽  
Tam Perry ◽  
Vicki Johnson-Lawrence ◽  
Vanessa Rorai
Keyword(s):  
Older Adults ◽  
African American ◽  
Behavioral Health ◽  
Research Participation ◽  
Advisory Board ◽  
Community Advisory Board ◽  
Aging Research ◽  
Research Recruitment ◽  
Ongoing Training ◽  
Health Related Research

Abstract Older African Americans’ (AA) participation in health-related research is severely limited; they are not involved in sufficient numbers and for sufficient duration to ensure the applicability of advancements in medical and behavioral health. This research participation gap exacerbates older AAs vulnerability to poor health outcomes and disparities. The Michigan Center for Urban African American Aging Research employs a progressive community-based participatory model that utilizes a structured community advisory board (CAB) of older AAs in metro Detroit to oversee the research recruitment and retention of fellow AA older adult research participants. CAB members are provided ongoing training on social and behavioral health research, supported in acting as a consultancy to outside researchers where they can be compensated for their expertise and engagement, and empowered as gatekeepers of a participant research registry of over 1000 AA older adults. This model has broad potential for advancing community engaged research with AA older adults.

scholarly journals Collaboration between patient organisations and a clinical research sponsor in a rare disease condition: learnings from a community advisory board and best practice for future collaborations

BMJ Open ◽  
2020 ◽  
Vol 10 (12) ◽  
pp. e039473
Author(s):  
Annelise Roennow ◽  
Maureen Sauvé ◽  
Joep Welling ◽  
Robert J Riggs ◽  
Ann Tyrrell Kennedy ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Clinical Research ◽  
Rare Disease ◽  
Best Practice ◽  
Advisory Board ◽  
Community Advisory Board ◽  
Standards Of Care ◽  
Trial Participant ◽  
Patient Organisations ◽  
Disease Condition

Introduction Transparent collaborations between patient organisations (POs) and clinical research sponsors (CRS) can identify and address the unmet needs of patients and caregivers. These insights can improve clinical trial participant experience and delivery of medical innovations necessary to advance health outcomes and standards of care. We share our experiences from such a collaboration undertaken surrounding the SENSCIS® clinical trial (NCT02597933), and discuss its impact during, and legacy beyond, the trial.Summary We describe the establishment of a community advisory board (CAB): a transparent, multiyear collaboration between the scleroderma patient community and a CRS. We present shared learnings from the collaboration, which is split into three main areas: (1) the implementation and conduct of the clinical trial; (2) analysis and dissemination of the results; and (3) aspects of the collaboration not related to the trial.1. The scleroderma CAB reviewed and provided advice on trial conduct and reporting. This led to the improvement and optimisation of trial procedures; meaningful, patient-focused adaptations were made to address challenges relevant to scleroderma-associated interstitial lung disease patients.2. To ensure that results of the trial were accessible to lay audiences and patients, written lay summaries were developed by the trial sponsor with valuable input from the CAB to ensure that language and figures were understandable.3. The CAB and the CRS also collaborated to co-develop opening tools for medication blister packs and bottles. In addition, to raise disease awareness among physicians, patients and caregivers, educational materials to improve diagnosis and management of scleroderma were co-created and delivered by the CAB and CRS.Conclusions This collaboration between POs and a CRS, in a rare disease condition, led to meaningful improvements in patient safety, comfort and self-management and addressed information needs. This collaboration may serve as a template of best practice for future collaborations between POs, research sponsors and other healthcare stakeholders.

scholarly journals Perspectives of Community Advisory Board Members in a Community-Academic Partnership

2018 ◽  
Vol 29 (4) ◽  
pp. 1529-1543 ◽  
Author(s):  
Sigolène Ortega ◽  
Megan Stamey McAlvain ◽  
Katherine J. Briant ◽  
Sarah Hohl ◽  
Beti Thompson
Keyword(s):  
Advisory Board ◽  
Community Advisory Board ◽  
Board Members

scholarly journals PARE0009 COMMUNITY ADVISORY BOARD INPUT CAN MAKE LAY SUMMARIES OF CLINICAL TRIAL RESULTS MORE UNDERSTANDABLE

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 1290.2-1291
Author(s):  
J. Welling ◽  
A. Roennow ◽  
M. Sauvé ◽  
E. Brown ◽  
I. Galetti ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Clinical Research ◽  
General Public ◽  
Advisory Board ◽  
Community Advisory Board ◽  
Ethical Review ◽  
Patient Organisation ◽  
Research Support ◽  
Advisory Boards ◽  
Clinical Trial Results

Background:Under European Union (EU) Clinical Trial regulations,1clinical research sponsors (CRSs) must ensure all studies performed in the EU are accompanied by a trial summary for laypersons, published within 1 year of study completion. These lay summaries should disseminate clinical trial results in an easy-to-understand way for trial participants, patient and caregiver communities, and the general public. The European Patients Forum (EPF)2and European Patients’ Academy on Therapeutic Innovation (EUPATI)3encourage CRSs to engage with patient organisations (POs) in the development of lay summaries. This recognises the patients’ contribution to clinical research and supports the development of patient-focused material.Objectives:We share learnings from a collaboration between scleroderma POs and a CRS to create the SENSCIS® trial (NCT02597933) written and video lay summaries.Methods:A community advisory board (CAB), comprising representatives from 11 scleroderma POs covering a range of countries/regions, was formed based on the EURORDIS charter for collaboration in clinical research.4Through three structured meetings, over a seven-month period, the CAB provided advice on lay summary materials (written and video) drafted by the CRS’ Lay Summary Group (Fig. 1). At each review cycle, the CAB advice was addressed to make content more understandable and more relevant for patients and the general public.Results:The CAB advised that the existence of lay summaries is not well known in the patient community and also recommended the development of trial-specific lay summary videos to further improve understandability of the clinical trial results for the general public. Videos are a key channel of communication, enabling access to information for people with specific health needs and lower literacy levels. Following CAB advice, the CRS developed a stand-alone video entitled“What are lay summaries?”and a trial-specific lay summary video. Revisions to lay summary content (written and video) included colour schemes, iconography and language changes to make content more understandable. For videos, adjustments to animation speed, script and voiceover were implemented to improve clarity and flow of information (Fig. 2). Approved final versions of lay summary materials are publicly available on the CRS website. Translation into languages representing trial-site countries is in progress to widen access to non-English speakers and, where possible, local versions are being reviewed by the patient community.Conclusion:Structured collection and implementation of CAB advice can make lay summary materials more understandable for the patient community and wider general public.References:[1]EU. Summaries of clinical trial results for laypersons. 2018[2]EPF. EPF position: clinical trial results – communication of the lay summary. 2015[3]EUPATI. Guidance for patient involvement in ethical review of clinical trials. 2018[4]EURORDIS. Charter for Collaboration in Clinical Research in Rare Diseases. 2009Disclosure of Interests:Joep Welling Speakers bureau: Four times as a patient advocate for employees of BII and BI MIDI with a fixed amount of € 150,00 per occasion., Annelise Roennow: None declared, Maureen Sauvé Grant/research support from: Educational grants from Boehringer Ingelheim and Janssen., EDITH BROWN: None declared, Ilaria Galetti: None declared, Alex Gonzalez Consultant of: Payment made to the patient organisation (Scleroderma Research Foundation) for participation in advisory boards, Alexandra Paula Portales Guiraud: None declared, Ann Kennedy Grant/research support from: AS FESCA aisbl, Catarina Leite: None declared, Robert J. Riggs: None declared, Alison Zheng Grant/research support from: We get grants from Lorem Vascular; BI China,; Jianke Pharmaceutical Co., Ltd.; Kangjing Biological Co., Ltd.; COFCO Coca-Cola to organize national scleroderma meetings, offer patients service, holding academic meetings and other public activities, there is also a small part of the grants used to pay the workers in our organization., Consultant of: I worked as a paid consultant for BI. Pay-per-job., Speakers bureau: I was invited once to be a speaker at BI China’s internal meeting and they paid me., Matea Perkovic Popovic: None declared, Annie Gilbert Consultant of: I have worked as a paid consultant with BI International for over 3 years, since Sept 2016., Lizette Moros Employee of: Lizette Moros is an employee of Boehringer Ingelheim, Kamila Sroka-Saidi Employee of: Paid employee of Boehringer Ingelheim., Thomas Schindler Employee of: Employee of Boehringer Ingelheim Pharma, Henrik Finnern Employee of: Paid employee of Boehringer Ingelheim.

scholarly journals “We Were Queens.” Listening to Kānaka Maoli Perspectives on Historical and On-Going Losses in Hawai’i

Genealogy ◽  
2020 ◽  
Vol 4 (4) ◽  
pp. 116
Author(s):  
Antonia R.G. Alvarez ◽  
Val. Kalei Kanuha ◽  
Maxine K.L. Anderson ◽  
Cathy Kapua ◽  
Kris Bifulco
Keyword(s):  
Historical Trauma ◽  
The United States ◽  
Advisory Board ◽  
Community Advisory Board ◽  
Board Members ◽  
Health Issues ◽  
Kanaka Maoli ◽  
Racial And Ethnic Minorities ◽  
American Scholar ◽  
Ethics Of Research

This study examines a historical trauma theory-informed framework to remember Kānaka Maoli (Native Hawaiian) and lesbian, gay, bisexual, transgender, queer, and/or māhū (LGBTQM) experiences of colonization in Hawai`i. Kānaka Maoli people and LGBTQM Kānaka Maoli face health issues disproportionately when compared with racial and ethnic minorities in Hawai’i, and to the United States as a whole. Applying learnings from historical trauma theorists, health risks are examined as social and community-level responses to colonial oppressions. Through the crossover implementation of the Historical Loss Scale (HLS), this study makes connections between historical losses survived by Kānaka Maoli and mental health. Specifically, this manuscript presents unique ways that Kānaka Maoli describe and define historical losses, and place-based themes that emerged. These themes were: the militarization of land; the adoption of christianity by Kānaka Maoli ali`i; the overthrow of the sovereign Hawaiian monarch; and the importance of māhū and LGBTQ perspectives. Each of these themes will be presented in detail. Written by a queer, mestiza Pinay-American scholar, her mentor, a lesbian Kanaka Maoli scholar/activist, with contributions from Community Advisory Board members, there will also be discussion about ethics of research with and for Kānaka Maoli.

scholarly journals A Community Engagement Advisory Board as a strategy to improve research engagement and build institutional capacity for community-engaged research

2018 ◽  
Vol 2 (2) ◽  
pp. 66-72 ◽  
Author(s):  
Alicia K. Matthews ◽  
Emily E. Anderson ◽  
Marilyn Willis ◽  
Amparo Castillo ◽  
Wendy Choure
Keyword(s):  
Community Engagement ◽  
Survey Data ◽  
Advisory Board ◽  
Institutional Capacity ◽  
Research Engagement ◽  
Community Engaged Research ◽  
New Community ◽  
The University ◽  
Quality Of Research

PurposeCommunity engagement is deemed as critical to the success of the CTSA program. In 2009, to improve research engagement and build capacity for community-engaged research across the translational spectrum, the Center for Clinical and Translational Science at the University of Illinois at Chicago created a Community Engagement Advisory Board (CEAB). Here, we report results of our ongoing evaluation efforts.MethodsCEAB activities are evaluated using mixed methods. Annual CEAB evaluation surveys were completed from 2010 to 2016 (n=106 respondents). In 2014, two 90-minute focus groups were conducted with a subset of recent CEAB members (n=19).ResultsSurvey data suggest respondents perceive their consultations to be helpful in improving the capacity of researchers (90%) and the quality of research projects (80%). Further, CEAB members perceive themselves to have personally benefitted from their involvement including obtaining new knowledge (84%), expansion of their networks (76%), and forming new community linkages (51%). Results of the qualitative data were consistent with survey data.ConclusionsOur CEAB has improved research engagement and developed institutional capacity to conduct community-engaged research in several ways. Our findings can inform the establishment or enhancement of community engagement services for CTSA-affiliated researchers and community partners.

Abstract P311: Engagement of a Community Advisory Board Informs an Exercise Intervention in Older African-American Couples

Circulation ◽  
2020 ◽  
Vol 141 (Suppl_1) ◽  
Author(s):  
Lyndsey M Hornbuckle ◽  
Amy Rauer
Keyword(s):  
Health Disparities ◽  
Community Engagement ◽  
Local Community ◽  
Exercise Intervention ◽  
Exercise Adherence ◽  
Advisory Board ◽  
Cultural Relevance ◽  
Community Advisory Board ◽  
Cardiometabolic Disease ◽  
Cardiometabolic Health

Introduction: Older African-Americans (AA) are vulnerable to cardiometabolic health disparities. As physical inactivity is highly prevalent in this population and regular exercise can help mitigate cardiometabolic disease, collaborations between the local community and academic researchers are needed to create sustainable exercise interventions. To this end, the current investigators formed a community advisory board (CAB) to consult on an interdisciplinary pilot intervention study that would examine the effects of couples-based resistance training plus walking on: 1) exercise adherence; 2) cardiometabolic risk factors (abdominal obesity, blood pressure, insulin resistance, hemoglobin A1c, high-density lipoprotein and total cholesterol, triglycerides, C-reactive protein, fibrinogen); and 3) the provision of partner support and receptivity to partner health influence in older AA romantic couples. Hypothesis: CAB consultation would enhance the proposed pilot study methods and facilitate community engagement. Methods: Seven local community members/leaders with a stake in the health of the AA community were invited to participate in two CAB meetings. In the meetings, investigators proposed ideas to pilot a novel exercise intervention in older AA couples and solicited input in four key areas: 1) priority health concerns of the target population; 2) the proposed study protocol; 3) cultural relevance; 4) and sustainability. Recorded responses were summarized and coded using a qualitative thematic analysis approach. Results: Multiple themes surfaced within each of the four focus areas including confirmation of the need to study cardiometabolic disease risk (e.g. hypertension, diabetes) in this population, potential recruitment challenges and suggestions to relax exclusion criteria, exclusion of potentially beneficial program components (e.g. flexibility training, education), the need for culturally-specific adaptations (e.g. incorporating music, providing AA role models), and long-term community engagement (i.e. future efforts to launch the intervention at the community level). Investigators made multiple study modifications per CAB recommendations. Conclusions: CAB feedback suggested the proposed intervention would be well-received and considered both beneficial and relevant by the community. CAB-recommended study modifications underscore the value of a community-partnered approach to intervention design that promotes cultural relevance and sustainability. These characteristics support the ultimate goal of reducing cardiometabolic health disparities in AA communities. Although the investigators recognize the current method deviates from true community-based participatory research that originates within a community, the model presented is beneficial as it engages the community in the developmental stage of evidence-based research.

scholarly journals Partnering to Increase Colorectal Cancer Screening: Perspectives of Community Advisory Board Members

2021 ◽  
pp. 019394592199317 ◽  
Author(s):  
Susan M. Rawl ◽  
Sandra Bailey ◽  
Beatrice Cork ◽  
Matthew Fields ◽  
Thomas Griffin ◽  
...  
Keyword(s):  
Colorectal Cancer ◽  
Cancer Screening ◽  
Colorectal Cancer Screening ◽  
Research Process ◽  
Advisory Board ◽  
Lessons Learned ◽  
Community Advisory Board ◽  
Board Members ◽  
Patient Centered ◽  
Study Results

The Patient-Centered Outcomes Research Institute (PCORI) defines engagement in research as the meaningful involvement of patients, caregivers, clinicians, insurers, and others throughout the entire research process—from planning to conducting the study to disseminating study results. The purposes of this paper are to (a) describe methods used to engage community members across the various phases of a PCORI-funded comparative effectiveness trial to increase colorectal cancer screening; and (b) report results of qualitative and quantitative evaluations of community advisory board members’ experiences on this project. Decisions to join and stay engaged with the study included feeling valued and appreciated, being compensated, the opportunity to contribute to research based on their skills and expertise, and being committed to colon cancer prevention efforts. Challenges identified by advisory board members included the significant time commitment, transportation, and meeting location. Lessons learned and guidance for researchers committed to patient and community engagement are described.

scholarly journals Improving Dementia Clinical Research Participation: Strategies From a Portland, Oregon, Pilot Study

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 57-58
Author(s):  
Nicole Bouranis ◽  
Sherril Gelmon ◽  
Elizabeth Needham Waddell ◽  
Dawn Richardson ◽  
Hyeyoung Woo ◽  
...  
Keyword(s):  
Clinical Research ◽  
Family Caregivers ◽  
Local Community ◽  
Research Participation ◽  
Healthcare Research ◽  
Community Advisory Board ◽  
Community Collaboration ◽  
People With Dementia ◽  
Dementia Research ◽  
Health Action

Abstract The NIA’s strategy to improve ADRD clinical research participation emphasizes local community collaboration. Literature that focuses on a person with dementia’s decision to participate in research does not speak to specific state or local factors nor the effects of local efforts. This study aimed to develop strategies to improve dementia research participation in the Portland, OR metropolitan area. A community advisory board comprised of clinicians, researchers, advocates, people with dementia, family caregivers, and older African Americans was established for this project. Thirty-three interviews were conducted with clinicians, researchers, advocates, people with ADRD, and family caregivers. The Robert Wood Johnson Foundation’s Culture of Health Action Framework was used to conceptualize motivation strategies and reflect elements that describe research participation among people with dementia. Strategies were identified to improve dementia clinical research participation: 1) Identify and promote local champions for ADRD clinical research participation; 2) Promote policies and processes that incentive cross-sector collaboration; 3) Recognize caregivers as full research participants; 4) Include people with ADRD and caregivers in the research design process; 5) Offer alternative options to reduce participation burden; 6) Evaluate and improve relationships between healthcare/research staff and patients/participants. These strategies can be used in conjunction with the Culture of Health Action Framework as a roadmap to form organization-community partnerships, facilitate motivation and empowerment, give decision-making power to people with ADRD and promote a local culture of research. Studies should be conducted in a larger context or as pilots in other communities to determine contextual relevance and generalizability for other areas.

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