The Community-Academic Aging Research Network – A Pipeline for dissemination

Abstract

Background/Objectives

The Community-Academic Aging Research Network (CAARN) was created to increase the capacity and effectiveness of Wisconsin’s Aging Network and the University of Wisconsin to conduct community-based research related to aging. The purpose of this paper is to describe CAARN’s infrastructure, outcomes, and lessons learned.

Design

Using principles of Community-Based Participatory Research, CAARN engages stakeholders to participate in the design, development, and testing of older adult health interventions that address community needs, are sustainable, and improve health equity.

Setting

Academic health care and community organizations.

Participants

Researchers, community members, and community organizations.

Intervention

CAARN matches academic and community partners to develop and test evidence-based programs to be distributed by a dissemination partner.

Measurements

Number of partnerships and funding received.

Results

CAARN has facilitated 33 projects since its inception in 2010 (30 including rural populations), involving 46 academic investigators, 52 Wisconsin counties, and 1 tribe. These projects have garnered 52 grants totaling $20 million in extramural and $3 million in intramural funding. Three proven interventions are being prepared for national dissemination by the Wisconsin Institute for Healthy Aging (WIHA): one to improve physical activity; one to reduce bowel and bladder incontinence; one to reduce sedentary behavior; and one to reduce falls risk among Latinx older adults. Additionally, one intervention to improve balance using a modified Tai-Chi program is being disseminated by another organization.

Conclusion

CAARN’s innovative structure creates a pipeline to dissemination by designing for real-world settings through inclusion of stakeholders in the early stages of design, and by packaging community-based health interventions for older adults so they can be disseminated after the research has been completed. These interventions provide opportunities for clinicians to engage with community organizations to improve the health of their patients through self-management.

INTRODUCTION

The Community-Academic Aging Research Network (CAARN) was created in 2010 with funding from the National Institutes of Health (NIA) as part of the Request for Applications to support the development, expansion, or reconfiguration of infrastructures needed to facilitate collaboration between academic health centers and community-based organizations for health science research.¹ Since its creation, CAARN has increased the capacity and effectiveness of the University of Wisconsin – Madison (UW) to conduct clinical and dissemination research related to aging with the Wisconsin Aging Network.

The Wisconsin Aging Network was established after the passage of the Older Americans Act (OAA) in 1965. The OAA mandated the creation of interconnected agencies at the federal, state, and local levels to plan and provide services to help older adults live independently in their homes and communities. The infrastructure of the networks might vary from state to state. Overall, the infrastructure is set to deliver services, including new evidence-based programs, to older adults, and work with community members to facilitate service delivery. The Aging Network provides an environment where investigators can test new programs in real-world settings.

Before CAARN was created, only a few UW researchers collaborated with providers belonging to Wisconsin’s Aging Network. Common barriers for collaboration on the academic side included: lack of understanding of structures of community organizations and exigencies of community service provisions, and lack of access to community partners who could engage older adults in research.^2,3 On the community side, barriers included: members of community organizations not always understanding the benefit of research for their programs, not knowing how to access researchers and best select research priorities, and lacking access to research infrastructure.⁴

The goal of CAARN is to match academic and community partners to develop and test interventions to improve the health of older adults that can be disseminated to organizations belonging to the Wisconsin Aging Network. The purpose of this paper is to describe CAARN’s infrastructure, outcomes, and lessons learned, which in turn, might help other entities to engage community organizations that work with older adults in research initiatives, and even replicate similar efforts and promote the dissemination of evidence-based interventions that can improve the health of communities.

METHODS

Conceptual Framework

CAARN’s model was inspired by the funding announcement published by NIH and was influenced by the concepts of Community-Based Participatory Research (CBPR), which is the process of engaging community members, organizations’ representatives, and researchers in all the stages of the research process with the objective of addressing social, structural, or environmental needs.³ Israel et al described the principles of CBPR as: ^3–5 1) Community is a unit of identity, with a shared set of norms, values, and interests; 2) processes use available resources in the community and build upon their strengths; 3) equitable partnership, where all partners share decision-making ability, and are empowered to do so; 4) capacity building among all partners; 5) research targets problems that are considered relevant to the community; 6) collaboration promotes mutual benefit of all partners; 7) findings and knowledge gained are disseminated to all partners; 8) collaboration promotes long-term relationships with commitment to sustainability of the programs and relationships; and 9) research engagement uses an iterative process.

Wallerstein’s model integrates principles of CBPR with those of implementation science and serves as the conceptual model for the structure and processes of CAARN and its research team.^6,7 The model articulates how CBPR is fundamental to overcoming the inherent challenges in translational research which include the “privileging of academic knowledge”, the risk of low generalizability of the results, and sustainability of programs when research funding ends. It posits that by engaging community stakeholders in co-design, and by attending to contexts, group dynamics and equitable partnerships, CAARN can ensure that interventions will be culturally specific, effective, sustainable, and feasible to disseminate broadly across similar communities. Bellone et al identifies four constructs central to CBPR partnerships: trust development, capacity of the community to conduct CBPR, mutual learning, and power dynamics.⁷

Function & Structure of CAARN

CAARN is a part of the UW’s Clinical and Translational Science Award (CTSA) and as such, has ready access to CTSA resources including bioinformatics, biostatistics, qualitative analytics, team science, and dissemination and implementation science expertise. CAARN’s staff consists of a Director, Program Manager, and Community Research Associates (CRAs) (Supplementary Table S1). The CRAs facilitate the research partnerships between academic investigators and community stakeholders. An Executive Committee, composed of community and academic stakeholders, oversees CAARN’s activities month-to-month. As of July 2019, CAARN had two CRAs employed by Wisconsin Institute for Healthy Aging (WIHA).

The CRAs identify community partners through Wisconsin’s Aging Network, which is comprised of a diverse mix of organizations that are responsible for delivering the OAA and the Wisconsin Elders Act programs and services to Wisconsin’s older adults. The administrative hierarchy of the “formal” aging network includes the U.S. Administration on Aging at the federal level, the Wisconsin Bureau of Aging and Disability Resources at the state level, three Area Agencies on Aging at the regional level (Greater Wisconsin, Dane, Milwaukee), multi-county Aging and Disability Resource Centers, and county and tribal aging units at the local level. The broader, informal aging network extends to include other statewide and local public and private service organizations, councils on aging, senior centers, and advocacy groups. These highly visible local organizations translate state and federal monies into tangible community-based services for older individuals. Representatives from Greater Wisconsin Agency on Aging Resources and Wisconsin’s Department of Health Services – Bureau of Aging & Disability Services serve on CAARN’s Executive Committee.

The Wisconsin Institute for Healthy Aging (WIHA) is a not-for-profit organization dedicated to bringing evidence-based healthy aging programs to communities throughout Wisconsin and beyond. To date, WIHA has been considered as the primary purveyor of programs developed under CAARN, unless WIHA does not have the capacity or ability to disseminate the program or it does not fit with their mission. The role of the purveyor includes: 1) market and distribute the evidence-based programs; 2) license the programs to community organizations; 3) train and certify program leaders; 4) evaluate fidelity of the programs; 5) track program use and demographics of workshop attendance across the nation; and 6) assist new organizations to implement the programs and identify funding sources to support the programs. WIHA’s Executive Director serves on CAARN’s Executive Committee and oversees the two Aging Network CRAs, both of whom are based at this organization. A logic model describing the specific activities and outputs generated as part of the work of CAARN is shown in Table 1.

Table 1:

Logic Model of CAARN

Inputs	Activities	Outputs	Outcomes
			Short-Term	Intermediate	Long-Term
• CAARN Staff (Community Research Associates, Coordinator, Program Manager, Director) • Executive Committee (Members of regional stakeholder groups) • Aging Network members • Investigators • University of Wisconsin – Madison (Funding & Logistical Support) • NIH grant #s and dates to support CAARN • Time	• Identification of priorities of community partners • Identification of potential community and academic partners • Training of community and academic partners • Creation of community-academic research partnerships • Facilitation of initial meetings • Assistance for grant submission • Problem solving, facilitation of ongoing partnerships • Assistance for development of materials for interventions	• Agreements and other documentation to facilitate relationships • Grant proposals • Distribution of funding to community organizations • Publications and scholarly products • Packaged interventions for dissemination	• Assess feasibility and acceptability of new interventions • Facilitate community-academic partnerships • Increase university and community capacity to develop new projects and interventions • Facilitate progression of interventions across the research continuum	• Packaging of proven interventions for dissemination • Identification of a purveyor • Development of a marketing plan • Dissemination of programs across Wisconsin and nationally	• Improve the health of older adults • Prevent injuries in older adults • Reduce health disparities

Partnership formation

Potential research projects emerge from either academic investigators that reach out to ask CAARN’s help in identifying community organizations to participate in development and testing of new programs, or from community stakeholders that reach out to CAARN to request development and/or testing of new community-based interventions that address the needs of older adults in their community. (Figure 1)

Figure 1:

CAARN’s process to match academic and community partners (as of June 2019)

Project ideas may come to CAARN at various stages of the research continuum, as long as previous studies have been done to show effectiveness of the project. For adaptations of previously proven interventions, we have used the criteria of Aarons et al to determine whether a new randomized controlled trial is needed.⁸ Once a project idea has been formed, the Executive Committee prioritizes the project according to specific criteria (Table 2), with preference given to projects that are in later stages of development. After the Executive Committee prioritizes the project, the Director and the CRA identify potential partners for the research. Academic partners (Investigators) are identified by asking other investigators on campus for input based on the topic of interest; and by searching departmental, center, and institute websites at UW-Madison. Once a potential investigator has been identified, CAARN Director reviews the investigator’s and their mentors’ funding and publication record to ensure the investigator/mentor has a track record of securing grant funding. The CAARN Director and the CRA meet with the investigator twice to explain CAARN’s process, discuss the principles of community partnership, and brainstorm about a research idea in line with the Aging Network’s priorities. If an investigator is interested in pursuing a research partnership through CAARN, the CRA trains the investigator on principles of community-engaged research and dissemination and implementation science. It is expected that investigators will progress their research from pilot to randomized trial to dissemination. (Figure 2)

Table 2:

Criteria for prioritization of research projects

Prioritization Criteria	Questions
Scientific merit	✓ Does this project have scientific merit? ✓ Is there a high likelihood of obtaining NIH or other extramural funding? ✓ Is there an interested researcher? Does the researcher (or his/her mentor) have a strong track record in procuring funding?
Dissemination potential	✓ How close is this project to implementation? (Projects further along the research continuum have higher priority)
Feasibility, CAARN Capacity	✓ What resources will be required to move forward on this project?
Community need, capacity	✓ Does this project meet an existing need of stakeholders? ✓ Is there readiness among stakeholders (i.e. interest, capacity)?
Intervention Sustainability	✓ Does this project anticipate significantly reducing health care costs or improving self-efficacy such that a payor (e.g., Medicare, Medicaid, private insurer) would cover the cost of it? ✓ Does the project foresee addressing a quality indicator (e.g., HEDIS measure, quality improvement standard) that would lead to health care systems embedding the intervention into their system and/or embedding referrals to other community providers of the intervention?

Figure 2:

CAARN’s research timeline

For projects initiated by an academic investigator, the CRAs identify potential community partners based on their knowledge of community partner’s interests. Within the Aging Network, community partners often indicate their topic interests directly to the CRAs. Additionally, Aging Units indicate their topic interests in their three-year strategic plan. Once a list of potential community partners (those with interest and readiness) has been developed, the CRAs invite the potential partners to a meeting with the investigator to discuss the topic and project idea. After the meeting, attendees assess their desire, capacity, and readiness to participate in the research. If more community stakeholders are interested than can be included as partners in the research project, the CRA asks those interested to submit an application that inquires about: community’s need in the topic area, the agency’s ability to supervise the project and recruit participants, the potential for sustainability of the intervention at the site, and the agency’s prior experience in the topic area, in implementing evidence-based health promotion programs and in participating in research. The CRA and the academic partner review the applications and select the community partners for the study. The remaining interested community agencies are invited to serve on an Advisory Board for the study or are told they will be invited to join any subsequent rounds of research.

Once partnerships form, the CRA mentors the investigators to use plain language, explain the scientific process to community partners, and respect community stakeholders’ input. The CRA facilitates the relationship between community and academic partners, ensuring that community partners’ input is included in all phases of grant writing and research. During the efficacy study, CRAs assist research teams to prepare the intervention for dissemination by developing materials such as leader manuals and toolkits, train-the-trainer manuals, and site implementation guides. Thus, once an intervention is proven, it is readily replicable, feasible to implement, and ready for dissemination.

Data collection and analysis

The data provided in this paper was extracted from annual reports that are maintained for funding and regulatory purposes. In addition, as part of the evaluation of CAARN, in 2013 CAARN staff conducted structured interviews with 10 community partners and 10 UW-Madison academic partners engaged in various stages of community-academic research partnership. All the interviews were transcribed, and one person created the code that would be used for content analysis to identify themes expressed by the participants. The information was summarized and presented to CAARN’s staff and Executive Committee for member checking to assure that the information was being interpreted as intended.

RESULTS

To date, 46 academic investigators collaborating with 52 Wisconsin counties and one tribe have garnered 53 grants totaling to $20 million in extramural and $3 million in intramural funding and resulting in 36 peer-review publications, related to 33 projects. One example of CAARN’s successes is “Bringing Healthy Aging to Scale” which tested a coaching intervention to improve counties’ adoption of two evidence-based programs: Stepping On,⁹ and Living Well with Chronic Conditions.¹⁰ The findings were positive and WIHA incorporated the coaching intervention into their work with county agencies and other states going forward.^11,12 CAARN’s work has resulted in five proven self-efficacy based, health behavior change interventions that now are in the dissemination stage (Table 3). Three of the five interventions are actively being disseminated: two by WIHA, (one to improve physical activity,¹³ one to improve bowel and bladder continence,¹⁴) and one by another organization (to improve balance using a modified Tai-Chi program¹⁵). Two, (one to reduce sedentary behavior, and one to reduce falls risk among Latinx older adults¹⁶) will be disseminated by WIHA once train the trainer manuals, implementation guides, and marketing materials are built. One intervention (to test the benefit of yoga adapted for seniors in improving balance and mobility) is being tested in a randomized clinical trial after a successful CAARN pilot. Three interventions are applying for funding for efficacy studies, three interventions have completed their pilots, one pilot study is in process, and two interventions are in the planning and development phase.

Table 3:

Sample of current CAARN projects according to the stages of research that have been completed or are currently in process with CAARN’s assistance.

	Planning & Development	Phase 1 – Pilot(s)	Phase 2 RCTs	Dissemination Status
AgeFully: A web-based guideline and resource center that will help caregivers to anticipate and prepare for important, consequential decisions.	X	Completed pilot
Beneficial Bites*: intervention designed to help older people overcome barriers associated with risk for inadequate nutrition.	X	Completed pilot
HelpCare Connect: A web-based application to connect caregivers.	X	In process
In-Home Cycling for Rural-Dwelling Seniors: A home-based intervention to increase physical activity.	X
Lighten Up!*: A group-based wellness program for older adults that uses positive journaling to increase well-being (decrease depression and improve mental health).24	X	X	Applying for funding
Med Wise*: A community-based self-efficacy program to improve older adults’ ability to communicate with pharmacists (medication management).25	X	X	Applying for funding
Mind Over Matter: small-group behavior intervention that builds skills and self-efficacy to promote continence, and improve upon both urinary (UI) and fecal incontinence (FI).14,26,27	X	X	Improved symptoms of urinary incontinence and bowel incontinence vs. control group	• 27 leaders trained • 23 workshops with 234 participants
Physical Activity for Lifelong Success**: behavior change intervention to increase physical activity for community-dwelling older adults.13			Improved comfortable gait speed vs control group	• 22 leaders trained • 14 workshops with 130 participants
Pisando Fuerte*¥: Translation and cultural adaptation of Stepping On for Hispanic/Latino older adults.16	X	X		Preparing for dissemination
Stand Up: Intervention to reduce sedentary behavior by encouraging older adults to stand more often and for longer durations throughout the day.28,29	X	X	Manuscript in preparation	Applying for funding
Stepping Online: An online intervention to improve adherence and maintenance of fall-preventing behaviors in older adults following completion of the Stepping On falls prevention program.	X	Completed pilot
Stepping Out: Working with mildly cognitively impaired veterans to promote fall-preventing activities.	X	X	Applying for funding
Tai Chi – Prime*μ: Intervention promoting better balance for older adults.15			Increased leg strength, tandem balance, mobility and gait, balance confidence, executive function vs control group	• 10 leaders trained • 6 workshops with 90 participants
Tai Chi – Spanish Adaptation: translation and cultural adaptation of Tai Chi Prime for Hispanic/Latino populations.	X
Yoga for Seniors: Explores how yoga improves functional limitations, reduces falls, and increases physical activity among rural older adults.30	X	X	RCT in progress

^*Projects were initiated by community partners

^**RCT was completed prior to CAARN engagement

^¥RCT not done as pilot evaluation showed fidelity to key elements of Stepping On.¹⁷

^μPilot study completed prior to CAARN engagement

Table 3 also shows how the projects have progressed through the research continuum, and describes the health outcomes if a randomized trial was performed. Table 3 also shows the projects (5 of 15) that were initiated by community partners

For two interventions, collaboration with CAARN began after the pilot study. The Physical Activity for Lifelong Success (PALS) program was demonstrated to be effective through a randomized controlled trial at another institution; hence collaboration with CAARN began at the dissemination research stage. Tai Chi Prime was piloted elsewhere before coming to CAARN for testing in a randomized controlled trial. Pisando Fuerte, a cultural and linguistic adaptation of Stepping On, had two pilots that demonstrated fidelity to key elements and effectiveness in reducing falls behavioral risk, similar to the original Stepping On research study.¹⁷ Based on the Aarons study,⁸ a randomized trial was deemed unnecessary; hence Pisando Fuerte is now being prepared for broad dissemination. The other interventions in Table 3 are new, or are being tested for new health benefits, and hence require rigorous development and pilot testing followed by a randomized controlled trial.

According to the qualitative evaluation performed in 2013, community and academic partners shared overwhelmingly positive feedback. CAARN was called “invaluable” and its staff and leadership was cited by partners as being responsive, “helpful,” “patient,” “easy to work with,” and an integral part of not only the community-academic partnership formation process but also of the processes of identifying and securing project funding, planning and implementing projects, and preparing for future stages of research. Partners appreciated the availability of CAARN staff as resources, the timeliness of responses, and the creative problem-solving demonstrated when barriers arose. Community partners most often cited budget assistance as an example of how CAARN staff served as a problem-solving resource.

Regarding willingness to participate in the projects, one community member expressed “There are a lot of counties that are interested in being part of research cause it’s exciting and so I think the reputation is good that way, because the people that I’ve talked to it’s the questions of ‘Oh, how did you get involved?’ and ‘How did you get picked?” and all, you know, ‘cause they’re interested too.”

DISCUSSION

Although other community-academic partnerships have been described,^2,18 and the use of purveyors is described in other areas of health,¹⁹ to our knowledge CAARN is the only resource that has a built-in pipeline to dissemination (through its partnership with WIHA). As the diversity of programs increases, CAARN recognizes the need to expand and identify other purveyors that have capacity and expertise to disseminate the programs.

An important key to the success of CAARN’s dissemination efforts is that interventions distributed through WIHA are eligible to receive Older Americans Act Title III-D funding, which is earmarked for evidence-based health promotion programs for people 60 years and older. For the purpose of Title III-D funding, evidence-based programs are defined by the Administration of Community Living (ACL) as those programs that meet the following characteristics:²⁰

• Evaluation of the program demonstrates effectiveness improving the health of older adults; and

• Program was tested using an experimental or quasi-experimental design; and

• Research results published in a peer-review journal; and

• Intervention has been implemented in a community site under real-world conditions; and

• Dissemination products are available to the public.

The above requirements highlight the need for rigorous research in the development of new programs, and why each stage of the research continuum (Figure 2) is necessary in the creation of evidence-based programs.

CAARN has been able to overcome some of the challenges associated with CBPR by identifying committed partners with known capacity to embark in research projects, prioritizing projects that meet community needs, hiring community liaisons (CRA) with knowledge and previous experience working with the Aging Network to facilitate partnerships, and promoting an environment of respect and mutual benefit. These processes have resulted in positive feedback from community partners and promoted enthusiasm across the Aging Network to participate in future projects, with many of the Aging Units including participation in research projects in their strategic 3-year plans.

The challenges of CAARN have not been systematically assessed across projects. However, one of the most important challenges has been the identification of academic partners that are committed to participate in CBPR. Three of the projects CAARN facilitated were impacted by investigators who had difficulty working with community partners. Two projects successfully advanced to subsequent research stages with substantial facilitation on the part of the CRAs.. One project has not gone forward beyond the pilot stage. Investigators for these three projects did not have an interest in carrying research through to dissemination or were not able to follow-through promptly on their roles and responsibilities as academic partners. As a result of these experiences, CAARN has instituted a process to screen out investigators who may lack commitment to CAARN’s goals and ethos, since one bad experience with one investigator can jeopardize CAARN’s relationships with the Wisconsin Aging Network at large.

Another challenge has been the identification of community partners that have the readiness to participate in research partnerships. In CAARN’s experience, Aging Network partners who have a history of strong success with recruiting older adults into existing health promotion programs are successful in research partnerships. The screening processes for community and academic partners allow CAARN to understand the goals and capacity of the potential partners and create “matches” that will result in long lasting partnerships.

CAARN investigators have access to several competitive, peer-reviewed pilot funding mechanisms through UW-Madison mechanisms. However, it has been a challenge to identify funding for randomized community-based trials, and for preparation for broad dissemination in community settings (e.g. developing an implementation guide, manuals and handouts to train leaders, etc.) In addition to NIH funding, investigators have received funding through regional and national foundations and through grant opportunities open to community organizations and the non-profit sector.

Through close collaboration with WIHA, CAARN has identified gaps in dissemination and implementation of evidence-based programs in Wisconsin and nationally, particularly among communities of color (African American, Hispanics, Native Americans) who are less likely to participate in evidence-based programs compared to Whites.²¹ Reasons for low reach of evidence-based programs include: 1) cultural and socioeconomic barriers to being trained and serving as program leaders; 2) distrust of researchers, health care systems, and other institutions; 3) length of programs at 6–7 weeks is often challenging for the underserved community, given multiple caregiving, work, and other personal demands; 4) programs have not been tailored so they can be readily provided by non-traditional service organizations (e.g. schools, churches, book clubs, dance studios, etc); and 5) programs have not usually been recommended by health care providers and/or covered by insurance programs, which highlights the need to increase partnerships with local health care systems and physicians.

To address gaps in reach of interventions to African American older adults, CAARN has recently expanded its infrastructure to partner with African American community-based organizations in Wisconsin. New CRAs are being hired by our African American partners to engage communities in long-lasting research partnerships that are meaningful to them. As more partners are being included, CAARN has created new evaluation processes that are based on principles of community based participatory research and build upon existing tools.^6,22,23 This new evaluation will allow us to systematically assess CAARN’s success in ways that are meaningful for stakeholders and the communities involved.

Implications for Geriatricians

Organizations that belong to an Aging Network provide a fertile ground for innovation and an opportunity to deliver services to improve the health and well-being of older adults in a community setting. Each organization has a specific capacity and access to a variety of evidence-based programs dedicated to address one or more issues (e.g. fall prevention, physical activity, balance, stress management, mindfulness). It is important for clinicians to understand the particular strengths and weaknesses of these programs and how they can be used by patients and their families. To facilitate this communication, CAARN has been working to strengthen the relationships between organizations and clinicians in order to maximize clinicians’ referrals to community-based programs that improve self-management of chronic conditions and increase communication back to clinicians regarding how their patients have benefited. However, more work is needed to increase the availability of these evidence-based programs in health care settings and to facilitate referrals from clinics and hospitals to community organizations.

CAARN’s innovative structure has been labeled as a pipeline to dissemination, based on its commitment to design for dissemination, which consists of including stakeholders in the early stages of design. Community stakeholders include older adult end-users, implementers (those who implement the programs in community settings), and adopters (organizational leaders who decide to take on the new programs for their programs). By engaging stakeholders in co-design, and by attending to contexts, group dynamics, and equitable partnerships, CAARN ensures that the interventions will be culturally specific, effective, sustainable, and feasible to disseminate broadly.

Supplementary Material

Supplemental Table

Supplementary Table S1: CAARN’s staff roles and responsibilities