IWH knowledge transfer and exchange approach a ‘perfect fit’ for episodic disabilities project

The Institute’s partnership project integrates rigorous research methods and stakeholder feedback, leading to practical tools for workers with chronic conditions

Until recently, workers with episodic disabilities in Canada have lacked evidence-based tools to help them obtain the supports they need to thrive at work. Episodic disabilities are long-term health conditions, often invisible to others, that are characterized by periods of relatively good health interrupted by periods of poor health. Examples include arthritis, multiple sclerosis, Crohn's disease, colitis, HIV, many mental health conditions, among others.

To address this evidence gap, Dr. Monique Gignac, scientific director and senior scientist at the Institute for Work & Health (IWH), devised and led a research project to improve supports for people living with episodic conditions. Titled Accommodating and Communicating about Episodic Disabilities (ACED), the project generated two new tools. The Job Demands and Accommodation Planning Tool (JDAPT) helps workers with chronic and episodic conditions, and the workplace parties who support them, identify accommodations that allow workers to successfully stay in their jobs. The Decision-Support for Communicating about Invisible Disabilities that are Episodic (DCIDE) tool helps workers consider whether or not to share some personal health information with others at work.

From the start, the team knew it was essential to involve stakeholders in the project—not just because of the funding requirement. This work was funded as a first-ever joint partnership of the Social Sciences and Humanities Research Council of Canada (SSHRC) and Canadian Institutes of Health Research (CIHR) partnership grant in Healthy and Productive Work, but that was not the only reason for our emphasis on stakeholders, says Gignac. Based on previous KTE work at IWH, we knew this work would have more impact, credibility, and practical value if we partnered with the knowledge users throughout the project. The project also emphasized rigorous scientific methods to create and evaluate the tools for workers and workplaces, she adds.

The team employed the integrated knowledge transfer and exchange (KTE) approach developed at IWH. Partnership or stakeholder engagement is central to the IWH approach, enabling the research team to incorporate practical feedback throughout the project and draw on the expertise and knowledge of the partners. This KTE approach was key to the success of the project.

IWH’s KTE approach

IWH defines knowledge transfer and exchange as a process of exchange between researchers and knowledge users, designed to make relevant research information available and accessible to stakeholders for use in decision-making about practices, programs and policies. The process of exchange refers to a two-way exchange of information between IWH research groups and stakeholders, both in the course of developing research ideas and proposals, and in the context of specific research projects.

This process helps to ensure that IWH research is relevant by addressing issues of importance to its stakeholders. It enhances the quality of the research by drawing on their expertise. It also helps IWH to communicate about its findings using language that is meaningful to potential knowledge users and through channels that are easy for them to access. In other words, it is designed to mobilize research to foster evidence-informed practice (and policy-making), as well as practice-informed research.

The fact that the JDAPT is evidence-based and that we were involved in its development has given us confidence in promoting it to people living with MS, says Julie Kelndorfer, Director of Government Relations and Advocacy at MS Canada, one of the partner organizations. We were glad to be involved in the planning and development of the JDAPT and DCIDE, adds Melissa Egan, Co-Director, National Programs, of Realize, another partner. This gave us a lot of confidence in the value of the tools.

Four components

The IWH approach to KTE involves four interconnected components.

1. Building and maintaining relationships with key stakeholders through regular contact outside the confines of specific research projects.
2. Engaging stakeholders in the process of planning for and conducting research projects.
3. Communicating about research in plain language through multiple channels.
4. Enhancing the capacity of stakeholders to use research findings in their work (i.e., to inform policy or practice).

While these components are conceptually distinct, success in one facilitates success in the others. There is a synergistic effect to being active in all four areas. All four of these components were applied in the ACED research project.

Building relationships. In the planning stages of the project, Gignac led the ACED team to identify organizations whose mandate and expertise aligned closely with the project goals, met with partners to identify gaps in tools and resources that could help people with episodic disabilities better sustain work, and prepared a large partnership grant application to fund the new research.

Gignac relied on prior relationships established in her work and on IWH’s capacity to engage key stakeholders and build relationships with them. The focus was on health charities whose stakeholders included people with episodic conditions. Once the partnership grant was secured, a  Knowledge Transfer and Exchange (KTE) committee was established with representatives from these organizations and IWH’s KTE team.

These individuals became partners in the ACED research project, contributing to the planning of the project, the development of the ACED tools and the dissemination of them. To strengthen relationships with some of the partners, the IWH researchers on the team made sure to share their expertise for the benefit of the partners, especially at the beginning of the project when research output was still some ways away. For example, the ACED team promoted several partner events via ACED newsletters (e.g. the Realize summit). Several resources of Arthritis Society Canada related to accommodation and disclosure were developed in collaboration with the ACED team early in the ACED project.

Engaging stakeholders in the research process. Meetings of the KTE committee were held throughout the project. The meetings were structured to gather input at regular intervals where partners could help with recruitment for research, engage in preliminary testing of tools, contribute ideas for tool content, and help with dissemination of tools. For example, consultations with partners led the team to understand the nuances of some job demands that can challenge people with certain episodic conditions; the tool was revised to address these additional job demand elements. Partner consultations also helped the team expand its list of support strategies for various job demands. In addition, the partners helped the ACED team establish an Expert Advisory Committee (EAC) comprised of individuals with lived experience of episodic disabilities. This committee’s advice, which led to clearer language used in the  summary that DCIDE users receive, was particularly helpful.

Communicating findings. In addition to the dissemination conducted by partners, findings from the research project were disseminated using various communication vehicles, such as IWH websites, newsletters, social media and webinars, and numerous presentations at events hosted by partners and other stakeholders. The ACED KTE committee provided feedback on the ACED website development including logo selection and overall structure. To date, there have been over 50 invited talks and conference presentations, including workshops for the federal government, vocational rehabilitation groups, professional associations, employer and worker groups.

Most partners also have links to the tools on their websites. Partners also connected with the research team for additional communication activities. While completing the research, the ACED team ramped up interactions with other interested stakeholders (e.g., Ontario Disability Employment Network, Employer Assistance and Resource Network on Disability, Epilepsy Toronto, disability managers, vocational rehab professionals, organization contacts, consulting groups.) They, in turn, promoted the ACED tools to their clients.

Enhancing capacity to use research. Engagement in the project allowed partners to learn first-hand about the nuance of research and the methods necessary to test and improve a tool. In addition, the partners shared their expertise in designing the tools and the dissemination strategies. This built trust in the quality of the tools and enhanced the capacity of partners and other stakeholders to use and promote them. Study findings were also published in open access to ensure partners and broader groups of stakeholders could refer to the research methods in the future.

The IWH integrated KTE approach was instrumental in the success of the ACED project, leading to practical evidence-based tools to support people living with episodic conditions. The KTE approach facilitated the exchange of ideas and expertise among researchers and partners. Being a partner in ACED has not only allowed us to help with the development and dissemination of the valuable JDAPT and DCIDE tools but also has strengthened our capacity to serve our clients, says Dr. Carolyn Goard, Director, Knowledge Translation and Exchange at Arthritis Society Canada.

While the process went well, there were challenges along the way. One was the challenge of finding relevant partners that can devote time to actively engage in a project. Another was the additional time demands to engage with partners without impacting on research and tool development timelines. A third was the inevitable turnover in partner contacts. With the support of KTE researchers and practitioners, the ACED research team could plan the KTE process and mitigate the challenges that emerged during the project.

The Institute’s KTE approach was a perfect fit for this partnership project. We really benefitted from the KTE knowledge and experience that had been developed and refined over the years at IWH, says Gignac. The result was a pair of practical tools that are easy to understand and that are being used by workers, workplaces, as well as organizational and health professionals to provide support.