Posted on December 7, 2017 by Darlene Gallant
I first became involved in patient/health advocacy when I became an accidental advocate for my brother, who was dying from cancer. Following this, I was an advocate for my father when he was dying from cancer. My advocacy became a full time job and a life-changing purpose when my husband Dave was diagnosed with idiopathic pulmonary fibrosis (IPF). I went from being a spouse and a partner to being labeled a caregiver. During his illness, I became a patient advocate, advisor, partner and champion. Through this terrible period, I noted a lack of information, support and/or assistance for patients and their families diagnosed with pulmonary fibrosis (PF).
After my husband succumbed to this terrible disease, I continued my work as a patient advocate and advisor.
I was fortunate to be a patient advisor for the 2017 Infoway Partnership Conference. Working closely with Infoway on the Conference has been a great learning experience. Infoway truly believes in patient engagement and has a passion for increasing awareness of and driving support for digital health. Patient advisors and Infoway worked hard to design the conference around patient engagement. By working together on events such as Partnership, we can enhance the health care process for all Canadians using digital health tools.
I worked on the strategy, design and content for the conference. We worked collaboratively on the patient scholarships for bringing patients, caregivers and family members to the conference. In addition to my role as advisor, at the conference I also moderated the sessions during the Consumer Health stream on the second day of the conference.
The Conference presenters were informative and dynamic, and questions from the audience were very thought-provoking. I was pleased to see that Indigenous health was a topic discussed at the conference.
As a patient advisor, I would have liked to see more interaction with the presenters. I think it would have been very useful to have a patient advisor sit on each panel. I feel very strongly that patient advisors have a voice that needs to be shared. We have the lived experiences that can provide useful input into what should be included in creating digital health solutions and services.
In closing, I would like to say the Partnership Conference was a very rewarding experience. The presenters and attendees were knowledgeable, approachable and very willing to interact with all. I look forward to next year’s conference.
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Darlene Gallant is a patient partner, advocate and advisor. She served as a Patient Advisor for the 2017 Infoway Partnership Conference.