Episodic conditions are long-term health conditions characterized by periods of relatively good health interrupted by periods of poorer health. Examples include arthritis, multiple sclerosis, Crohn's disease, colitis, HIV, many mental health conditions, among others. Workers with these conditions often have to navigate how best to communicate with their employers about their health and accommodation needs.
For the health charities and not-for-profit groups that support people living with episodic conditions, being able to provide evidence-based tools and resources to help clients and patient communities navigate workplace communication issues has emerged as a priority in recent years. That was why it was viewed as an opportunity when the Institute for Work & Health (IWH) invited several health charities to participate as partners in a research project called Accommodating and Communicating about Episodic Disabilities (ACED). The seven-year partnership benefitted not only IWH by enhancing the quality of the research; it also benefitted the partner organizations. Participating in the research process and the tools developed through ACED enhanced the partners’ ability to serve their clients.
In the planning stages of the project, the ACED team, led by IWH Scientific Director and Senior Scientist Dr. Monique Gignac, identified organizations whose mandate and expertise aligned closely with the project goals. A knowledge transfer and exchange (KTE) committee was established with representatives from these organizations.
Health charities were critical to include as they had considerable insight into the work-related challenges faced by members of their communities,
says Gignac. They also helped us to connect directly with people living and working with different episodic health conditions.
This approach built on the commitment of IWH to engage key stakeholders in the research process—what is known as integrated KTE.
The ACED project, which wrapped up in the spring of 2025, showcased the role partners can play in developing user-friendly research products and in disseminating these products more widely than would have been possible without their help.
The ACED project generated two new tools. The Job Demands and Accommodation Planning Tool (JDAPT), launched in March 2023, 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. And the Decision-Support for Communicating about Invisible Disabilities that are Episodic (DCIDE) tool, launched in November 2024, helps workers consider whether or not to share some personal health information with others at work.
We were glad to be involved in the planning and development of the JDAPT and DCIDE,
says Melissa Egan, Co-Director, National Programs at Realize, a charitable organization working to improve the health and wellbeing of people with HIV and other episodic disabilities. This gave us a lot of confidence in the value of the tools.
Realize had been in dialogue with employers to help them better understand the needs of employees with episodic health conditions. The charity was seeking a tool to help guide such conversations and the JDAPT filled this gap.
Our clients, both workers with an episodic condition and their employers, were looking for a tool that could help them identify helpful, practical work accommodations. The JDAPT was a revelation,
says Egan. It was consistent with our broader messages but gave our clients something concrete they could put into practice.
Many of Realize’s clients have become enthusiastic users of the JDAPT, Egan adds. Some clients told us that they had never seen anything like it.
Realize has promoted the JDAPT through a number of channels. These include social media, workshops and training programs about episodic disability and employment, the charity’s website, and a dedicated website established by Realize to provide information/resources about living and working with episodic disabilities. This website, named the Forum, has a page set aside to feature the different versions of the JDAPT.
Realize also hosts an annual National Summit on Episodic Disabilities and Employment, and Dr. Gignac has presented on the ACED project at all five of the National Summits to date. As well, in the spring of 2025, Realize entered into a new collaboration with IWH that will enable Realize to offer additional coaching on the use of the JDAPT to employers participating in its workshops.
Arthritis Society Canada was another key partner in the ACED project. Several Arthritis Society resources related to accommodation and disclosure (available on its website) were developed in collaboration with the ACED team early in the project.
After the release of the JDAPT and, later, the DCIDE tool, Arthritis Society Canada actively promoted them through a number of channels. These include its newsletter, website, social media, the Arthritis Talks webinar series, and email to the society’s Online Consumer Panels (a bilingual network of at least 100 volunteers living with arthritis across Canada).
Being a partner in ACED has not only allowed us to help with the development and dissemination of the valuable JDAPT and DCIDE tools; it also has strengthened our capacity to serve our clients,
says Dr. Carolyn Goard, Director, Knowledge Translation and Exchange at Arthritis Society Canada. It reinforced that arthritis and work limitations is a priority, which was reflected explicitly in our 2020-25 research strategy (now extended to 2027) as one of five priority areas.
More recently, Arthritis Society Canada has been holding consultations for a nationwide Arthritis Action Plan (AAP) and key stakeholders have included workplaces and benefit providers. One of the virtual discussion groups held as part of that nationwide consultation was co-facilitated by Dr. Gignac in June 2024.
Participation in ACED has also helped the society connect with and learn from other health charities that have a similar mission. For example, through ACED, Arthritis Society Canada connected with Realize to learn about their experience with community consultations and apply this to their own consultations.
As was the case for Realize and Arthritis Society Canada, involvement in the ACED project has strengthened the ability of MS Canada to support its clients, people with multiple sclerosis. 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 and a member of the ACED KTE Committee. Our participation in ACED helped to shape and inform MS Canada’s income and employment security priority.
One way that MS Canada provides support to people affected by MS is through its MS Knowledge Network, a hub of information and resources staffed by trained MS Navigators who provide personalized help to connect clients to the resources they need. A presentation to MS Navigators by Gignac in 2023 encouraged their use of the JDAPT with clients. MS Canada has also promoted the JDAPT to employers and to their network of clinicians.
MS Canada also tapped into one of its volunteer networks called MS Ambassadors, many of whom have lived experience of the condition—not just to promote the tool but to contribute to its development. One such ambassador is Amanda Fraser, who was a registered nurse when she was diagnosed with MS and eventually went on long-term disability. She served on both the ACED KTE Committee and the ACED Expert Advisory Committee. If I had access to a tool like the JDAPT, it could have changed the trajectory of my career,
says Fraser, who with Dr. Gignac has given a webinar about the ACED tools. The JDAPT provides people with episodic conditions concrete suggestions that fit the specific context of their condition and their work demands. I use the JDAPT now to help me in my volunteer work.
The partnership established by the ACED project with Realize, Arthritis Society Canada and MS Canada not only strengthened the quality of the ACED tools. It enabled these organizations to build their capacity to serve their clients and helped ACED get the tools into the hands of the people who could use them. The ACED project demonstrates the value of the IWH KTE approach—a key component of which is to involve the perspectives and contributions of organizations and individuals closest to the issue. The success of this project exemplifies the goals of KTE: to foster evidence-informed practice and practice-informed research.