CEO Listening Tour identifies key themes among Parkinson Community

In April 2020, Parkinson Canada welcomed new President and CEO, Dr. Karen Lee, just weeks after the global outbreak of COVID-19. Throughout the summer Karen embarked on an 8-session virtual listening tour with participants from across Canada. The purpose of the CEO Listening Tour was for Karen to meet stakeholders who are integral to the Parkinson’s community and who have contributed in varying ways to the success of Parkinson Canada.

Participants shared their resilience, passion, and determination for the Parkinson’s community through sharing their experiences living with Parkinson’s, involvement in their communities, and commitment to living well with Parkinson’s. The insights that were gathered from the tour have been consolidated into this report and are grouped into five key theme areas.

“Thank you to the people affected by Parkinson’s, health and community care providers, researchers, and partner organizations who participated in the CEO Listening Tour. Your perspectives are vital to the continued success of Parkinson Canada delivering on its mission.”

– Dr. Karen Lee, President and CEO, Parkinson Canada

Key themes

A key theme presented by participants is the need for Parkinson Canada to more effectively include the voice of people affected by Parkinson’s in all aspects of the organization’s decision-making processes. It was suggested that Parkinson Canada establish a formal group with representation from diverse individuals affected by Parkinson’s. The suggested purpose for the group is to provide insights on their experiences as a way to help improve and enrich the development of Parkinson Canada’s programs, services, and advocacy efforts. Overall, participants agreed that the voice of people affected by Parkinson’s needs to be amplified in everything Parkinson Canada does.

The role of Parkinson Canada in communities garnered the most feedback from participants. There were many specific examples of creative programs and groups that have been formed organically by people affected by Parkinson’s in communities across the county. There was an acknowledgement among participants of the need for more national sharing of these types of community ideas. Furthermore, participants stated that there is a need for better consistency and access to programs and resources across the country, especially those that would target rural and underserved populations.

Participants stressed the importance of using technology to connect people affected by Parkinson’s, such as the platform that is being provided to support groups during the pandemic. It was noted that digital or virtual platforms are critical for providing services and resources, but that it cannot be the only method of engagement due to barriers in accessing technology that some in the community may face.

The lack of specific services for people who are newly diagnosed, and young onset were identified as gaps in Parkinson Canada’s programs and services. Support groups are found to be beneficial for many; however, groups focused on similar interests that could be more active (e.g. cycling) may engage and benefit a broader range of people. The importance of exercise was highlighted across all sessions along with the need for Parkinson Canada to offer programs that focus on exercise. The suggestion of including a peer-to-peer support model in program offerings was put forward to connect and engage more people who may not be comfortable with group settings or who prefer one-to-one engagement.

Participants indicated that the linkage between Parkinson Canada and neurologists/movement disorder clinics could help support individuals and families from the time of diagnosis. The challenge of receiving a Parkinson’s diagnosis without any supports was flagged as an area Parkinson Canada could play a bigger role in at the community level.

SuperWalk is lauded as being a strong community event with a compelling brand. There is an interest to bring the spirit and brand of SuperWalk through all of Parkinson Canada’s work. A challenge raised with regards to SuperWalk is the concern that money raised in communities does not stay directly in communities. Participants acknowledged that better messaging of how funds are used by Parkinson Canada and the impact those funds have in communities would ease these concerns.

There was also an interest in Parkinson Canada playing a more active role in enabling and empowering community members to support each other.

Parkinson Canada has a network of Ambassadors (volunteers interested in advocacy) across the country. These volunteers who are looking for more and consistent ways to be engaged in the advocacy work. There was an interest expressed for Ambassadors to have broader involvement in promoting Parkinson Canada’s efforts in their communities that extend beyond a singular focus on advocacy.

There is an acknowledgment that systemic change is needed for Parkinson’s care in Canada. Parkinson Canada should have a targeted and focused ask that addresses key issues raised such as the need for multidisciplinary care and wait times for a diagnosis.
It was also noted by that an investment in more provincial advocacy efforts should be considered, especially when advocating for changes to the health care system.

Participants agree that Parkinson Canada should be the “go to” organization for people with Parkinson’s and decision-makers. It was suggested that Parkinson Canada should be developing position statements on topical issues to help with informed decision-making and advocacy.

There was recognition among the participants that Parkinson Canada’s Research Program provides an important role in the Parkinson’s research ecosystem. In particular, the participants pointed to Parkinson Canada’s support for novel ideas and new researchers as being a notable benefit of the program. Participants suggested that Parkinson Canada consider increasing the pilot grant funding and extending in the timeline for funded projects. There was interest in investing in Parkinson Canada investing in more research focused on finding the cause, early predictors, and risk reduction for Parkinson’s disease.
Participants expressed excitement about the promise of the Canadian Open Parkinson Network (C-OPN). It was noted that the prospect of less duplication of efforts, increased research participation, and the advancements towards finding more treatments and a cure were most encouraging to participants.

The need for more patient engagement in the research program was indicated as an area to improve on, as well as more targeted research communications and the promotion of clinical trials for people affected by Parkinson’s.

The participants indicated that Parkinson Canada needs to have greater profile of both the disease and the organization. Parkinson Canada should have clear, consistent, and modernized branding that conveys a more youthful, vibrant, and encouraging presence that focuses on living well with Parkinson’s. It should be easy for the public to know where funds go when they donate to Parkinson Canada. The participants pointed to the website as a critical area that needs to be updated and made easier to navigate. Participants indicated their interest in sharing their story living with Parkinson’s and encouraged Parkinson Canada to use more storytelling in the organization’s marketing and communications.

Most of all, the stories that you shared during these sessions showcased the importance of community; of acknowledging symptoms but not being defined by them; and of perseverance. SuperWalk’s No Matter What message was highlighted as a theme that spoke to these important characteristics

Taking action

We look forward to sharing a new strategic plan with the community. The strategic plan will be responsive to the needs and gaps identified through the CEO Listening Tour and other stakeholder engagement, as well as an analysis of the environment in which Parkinson Canada operates.

Ongoing dialogue will continue to ensure Parkinson Canada is meeting the needs of people affected by Parkinson’s today and in the future. Parkinson Canada is committed to the vision of a better life today for People Living with Parkinson’s; a world without Parkinson’s tomorrow. No Matter What.

Share your thoughts with us

Although the listening tour has now concluded, we’re always looking to hear from our Parkinson community. Have thoughts on what you see here? Email us at hereforyou@parkinson.ca.