How did you become a patient advocate?
At the beginning of the 90s, I was a professor of psychology at the University of Windsor, Canada, and working in communities where I became involved with a number of patients. A good friend of mine had a child affected by tainted blood and was involved in a group that was trying to address this issue. The group needed some help so I offered my skills.
How did you become involved in the Consumer Advocare Network and CORD?
We founded the Consumer Advocare Network because there were almost no patient groups engaged in policy and while there were major changes happening, every time we looked at the policy, patients weren't involved. I got involved in the Canadian Organization for Rare Disorders (CORD) as we didn't have an orphan drug policy in Canada; I was asked to write a position paper to try to advance policy on behalf of rare diseases and advocate on their behalf using current knowledge.
How did you become involved in IAPO?
I’d heard about IAPO through my network and I started to follow its development. I found that IAPO had visionary patient perspectives and an insightful newsletter. I joined IAPO at the time of IAPO’s first congress and saw an opportunity to engage internationally. This was a powerful event in terms of the vision of patient-centred healthcare and having patient groups engaging with each other across diseases and countries.
What has your involvement in IAPO brought you?
As a collective of patients you can be extremely powerful. The concept of patient-centred healthcare is now the driving mandate for all healthcare and everyone is beginning to recognize the need for healthcare to be patient-centred to be effective. IAPO gives me the confidence that what I’m doing is right as I have the conviction of an army behind me. You know that what you're asking for is absolutely the right way to go.
How do you bring the personal story to national policy-makers?
I use the personal story to create interest and leverage change; people respond to other people so you have to have the story which you surround by other initiatives. When I worked on the issue of tainted blood we were dealing with people who were injured and angry. By bringing them together and translating that emotion into the real issue, which was a need for fundamental change, we had a policy issue. We were able to position tainted blood as such a huge issue that we created a system change. That was a powerful experience and what it said to me was: we can do this. Without the patient driving it, it never would have happened. Tainted blood was about our system being in jeopardy and it didn't just affect those personally affected or at risk. That's where IAPO comes in, creating the common ground for all people.
What has been your biggest challenge as a patient advocate?
Sustainability. I’m forever trying to balance resources and secure funding. You have to fight to get resources and being able to sustain resources is a huge challenge. I’m a glass half full kind of person so I keep moving forward!
What do you see as the biggest challenge in building an alliance?
It’s the same challenges everywhere. Our biggest enemy is ourselves and keeping people together. We have to build and continue to bring in new members and balance different interests to work together and focus on the big picture and the bigger goals. The more diverse we are, the bigger the voice and the bigger the challenge; though of course – the bigger the impact!
How did you go from member representative to Chair of the IAPO Governing Board?
IAPO is very participatory in its events and at the first Congress in 2005 there was room for me to participate. At the next Congress, I was able to offer my skills to do training for IAPO and my involvement grew from there. The nice thing about IAPO is that there is the space for you to do as much as you want to. I accepted a nomination for the Board and was delighted to be elected in 2007. I then became Chair in 2011.
What keeps you busiest as a patient advocate?
Trying to raise money. I’m forever writing proposals, meeting people and putting together conferences to promote the changes we’re working on.
If you could give one word of advice to other IAPO members what would it be?
Work together. Or as my friend would say “we've got to row together”.
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