Community Advisory Boards
Mayo Clinic Traumatic Brain Injury Model System Center
Submitted by Anne Moessner
According to the Canadian Institutes of Health Research (CIHR, n.d.), bringing users and creators of knowledge together during all stages of the research cycle is fundamental to successful knowledge translation (KT). Mayo Clinic’s Traumatic Brain Injury Model System (TBIMS) Center has relied on its community advisory board (CAB) to formalize an enduring academic-community partnership, guiding decades of community-based participatory research and providing a means for stakeholders to conceive of, design, oversee, evaluate, and disseminate research.
A frequently stated priority of the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) is to ensure that input from individuals with traumatic brain injury (TBI) is used to shape TBIMS research. CABs—groups that provide expert advice and guidance, particularly from the consumer perspective—are crucial to the success of NIDILRR-funded projects. In existence since 1991, our TBIMS CAB has served as an external advisory group for brain rehabilitation clinical practice and research at Mayo Clinic. Our CAB includes individuals with TBI and their families as well as state brain injury alliances from the region; state departments of public health; state departments of human and vocational services; the Veterans Health Administration; an academic-based Center for Rural Health; and hospital, subacute, and community-based service providers. Decades of collaborative policy and research relationships have resulted in a Minnesota Department of Human Services TBI Advisory Committee; a state TBI waiver; the Minnesota Department of Health’s Trauma Registry; resource facilitation services operated by the Minnesota Brain Injury Alliance and the Brain Injury Alliance of Iowa; a statewide trauma system and committee; and implementation of three TBIMS-led, community-based pragmatic clinical trials.
Mayo Clinic’s TBIMS Center CAB meets in person twice a year. Members hail from a five-state region and include equal numbers of research and community members as well as policymakers and providers from various health care, public health, and public policy organizations. Consumers of services and consumer advocates compose an unvarying 30% of CAB membership. Meeting agendas are set by members, as is accountability for action items.
Our CAB is a foundational, user- and context-specific KT strategy for our TBIMS Center because, at its core, it includes all steps involving the creation of new knowledge and its application, multidirectional communication, and constant collaboration among members. CIHR describes a global KT model with six opportunities within a research cycle where actions that facilitate KT may occur (see Table 1). Our diverse, stable, forthright, and experienced CAB has routinely intervened at each level of our five NIDILRR-funded projects. As supported by Newman et al. (2011), CAB members function as partners (engaging in mutually beneficial discussions and developing solutions for both the research team and the community) instead of advisors (community-provided suggestions may or may not be accepted by researchers). As a direct result of CAB feedback, our last three studies included more person-centered planning, were tested in the real world as opposed to the confines of the hospital or outpatient setting, and were designed for implementation so that interventions can be adopted without additional trials, all of which foster community participation of people after TBI.
|Table 1. CIHR Model of Knowledge Translation (Sudswad, 2007)
|CIHR (2005) proposed a global KT model based on a research cycle that could be used as a conceptual guide for the overall KT process. CIHR identified six opportunities within the research cycle at which the interactions, communications, and partnerships that help facilitate KT could occur. Those opportunities include
|KT1: Defining research questions and methodologies
|KT2: Conducting research (e.g., participatory research)
|KT3: Publishing research findings in plain language and accessible formats
|KT4: Placing research findings in the context of other knowledge and sociocultural norms
|KT5: Making decisions and taking actions that are informed by research findings
|KT6: Influencing subsequent rounds of research based on the impacts of knowledge use
At its inception, Mayo Clinic’s TBIMS Center joined with stakeholders to understand the combination of medical and social problems faced by individuals with TBI. This successful collaboration was—and is—predicated on a clear understanding by all involved that medical, social, and community-based services providers must work together to holistically address the complex combination of medical and social needs of individuals living with TBI.
Strategies for impact:
- Keen attention to trust building and confidentiality, assuring all members have an equal voice
- A focus on data and policy sharing to drive decision making
- Early stakeholder input (years in advance of research proposals)
- Drill down in agency talent (e.g., the Minnesota Department of Health lends expertise in epidemiology, health economics, and state trauma systems)
- Research guidance, program evaluation, and assistance from the Mayo Clinic to nonprofit CAB members seeking grants and contracts for social and community-based services
- Sustainability via TBIMS Center support for travel, lodging, and meals and for requisite technology for those who cannot travel
- Member and Council recognition and acknowledgement on our TBIMS Center website and in publications and presentations (For more information, see the Center on KTDRR’s webinar, “Everything You Wanted to Know About Advisory Boards,” at https://ktdrr.org/training/webcasts/webcast70/index.html or https://www.youtube.com/watch?v=2ALaV8qVfW4&feature=youtu.be)
- Strength of grant applications as evidenced by continuous NIDILRR funding since 1998 totaling more than $7.7 million
- Integrated participation of our CAB led directly to our Center’s current trial (clinicaltrials.gov MRFI), which has already influenced the research community by presenting implementation science methodology nationally
- Mutually beneficial to members and stakeholders in terms of cross education, consultation, project management, and board membership
- Member longevity (25–28 years for five members, two of whom are individuals with brain injury) and an open-door policy for new members to join at any time with no term limits or voting
Mayo Clinic Traumatic Brain Injury Model System Center
200 First Street
Rochester, MN 55905
- Anne Moessner, 507-255-3116, TBIMS@mayo.edu
- Canadian Institutes of Health Research. (n.d.). Canadian Institutes of Health Research [Webpage]. Retrieved from http://www.cihr-irsc.gc.ca/e/193.html
- Newman, S., Andrews, J., Magwood, G., Jenkins, C., Cox, M., & Williamson, D. (2011, May). Community advisory boards in community-based participatory research: A synthesis of best processes. Preventing Chronic Disease, 8(3), 1–11. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3103575/
- Sudsawad, P. (2007). Knowledge translation: Introduction to models, strategies, and measures. Austin, TX: Southwest Educational Development Laboratory, National Center for the Dissemination of Disability Research. Retrieved from https://ktdrr.org/ktlibrary/articles_pubs/ktmodels/#def
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