Connecting Policymakers to Disability Researchers

American Institutes for Research
Center on Knowledge Translation for Disability and Rehabilitation Research
Submitted by Ann Williams Outlaw

Focus

Using a knowledge brokering model, the Center on Knowledge Translation for Disability and Rehabilitation Research’s (Center on KTDRR’s) Policy Portal connects National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) grantees—producers of scientific knowledge—to disability advocacy organizations—knowledge users.

Context

The Center on KTDRR serves as the main knowledge translation (KT) resource for NIDILRR grantees. Our mission is to make it easier to find, understand, and use research to benefit people with disabilities. In line with this mission, the Center on KTDRR serves as a knowledge broker between NIDILRR-funded researchers, and disability advocates and policymakers. Knowledge brokers “link researchers who produce scientific knowledge … with knowledge users” (Conklin et al., 2013, p. 2). The KT goal of our Policy Portal is to promote use of NIDILRR-funded research findings in policy by building meaningful connections between policymakers and disability researchers.

KT Activity

Using a four-pronged approach, the Center on KTDRR developed a Policy Portal to promote the use of NIDILRR-funded research by disability advocates. The Center on KTDRR consults with advocacy organizations to guide the development of the Policy Portal.

Step 1: Development of Policy Portal

In creating the Policy Portal, the Center on KTDRR adapted the Consumers United for Evidence-Based Healthcare membership selection criteria to vet disability and consumer organizations for inclusion in the portal. These criteria included that organizations must be focused on disability, possess an interest in evidence-based research, not be dominated by commercial interests that could cause the organization to be viewed as possibly compromising its commitments to consumers, and be national or international in scope.

For organizations that met these criteria, the Center on KTDRR collected information on each organization including acronym or title abbreviation, mission, website URL, office address, phone number, name of president or executive director, e-mail, disability type(s) addressed, and NIDILRR outcome domain.

Step 2: Discover Policy Initiatives of Disability Organizations

Staff from the Center on KTDRR sent information introducing the Center and the intent of its Policy Portal to the executive directors and policy directors of the consumer organizations. In this letter, we also requested the completion of an online survey of the policy initiatives of the organization. We relied on the Association of University Centers on Disabilities (AUCD) to provide input on the design of the survey. The Center on KTDRR was advised to keep the online survey short, open-ended, and to the point to decrease respondent burden. We used the results of this survey to curate lists of high-quality, full-text, systematic reviews relevant to respondents’ expressed policy interests.

Step 3: Identify and Share Systematic Reviews Related to Policy Initiatives

The Center on KTDRR provided collections of NIDILRR-funded systematic reviews pertinent to the reported policy priorities of all survey respondents to provide research that would inform their advocacy and policymaking.

Step 4: Connecting Researchers With Disability Advocates

Understanding that the best predictors of evidence use by policymakers are interpersonal connections with researchers (Lavis et al., 2002; Shearer, Dion, & Lavis, 2014), we connected the systematic review authors to the advocacy organizations to foster the formation of a strong and mutually beneficial relationship.

Impact

Ultimately, 26 organizations were included in the directory on the Center on KTDRR’s website. Nine consumer-oriented organizations responded to the survey request. Twenty-one systematic reviews were identified and distributed to the survey respondents, and authors of all 21 systematic reviews were contacted. At the time organizations and researchers were contacted, there were no plain language summaries for any of the systematic reviews; authors of four systematic reviews expressed interest in creating plain language summaries of their reviews for interested groups.

Going forward, the Center on KTDRR will collaborate each year with a different consumer-oriented organization such as AUCD or, in 2020, the National Council on Independent Living (NCIL). Their perspectives and access to consumer networks ensure that the portal will continue to be useful and relevant to policymakers and organizations that engage in conversations with them. Our goal is to ensure that the Policy Portal and its utility continue to grow.

In addition, we will request interviews with the executive directors who received the lists of full-text articles related to their priority interests to gather their input, which will help strengthen communications among NIDILRR grantee authors, the consumer organizations, and the Center on KTDRR. Although not an intended result of this activity, the need for succinct summaries on exhaustively researched topics is obvious. Consequently, the Center on KTDRR will continue to host trainings for researchers on writing summaries in plain language to communicate research findings with more clarity, and make them accessible to consumers and advocates. Finally, the Center on KTDRR will continue to seek avenues that foster relationships between grantees and advocacy organizations that share the center’s mission.

Contact Information

Center on Knowledge Translation for Disability and Rehabilitation Research
American Institutes for Research
4700 Mueller Blvd.
Austin, Texas 78723
https://ktdrr.org/policyportal

Key contact:

References

  • Conklin, J., Lusk, E., Harris, M., & Stolee, P. (2013). Knowledge brokers in a knowledge network: The case of Seniors Health Research Transfer Network knowledge brokers. Implementation Science, 8(7), 1–10. http://dx.doi.org/10.1186/1748-5908-8-7
  • Lavis, J. N., Ross, S. E., Hurley, J. E., Hohenadel, J. M., Stoddart, G. L., Woodward, C. A., & Abelson, J. (2002, March). Examining the role of health services research in public policymaking. Milbank Quarterly, 80(1), 125–154. http://dx.doi.org/10.1111/1468-0009.00005
  • Shearer, J. C., Dion, M., & Lavis, J. (2014, October). Exchanging and using research evidence in health policy networks: A statistical network analysis. Implementation Science, 9(1), 126–138. http://dx.doi.org/10.1186/s13012-014-0126-8