Julie

Julie

Julie Drury is the Strategic Lead - Patient Partnership for the Canadian Foundation for Healthcare Improvement. Julie is passionate about the potential of patient / family / caregiver engagement, partnership and leadership in health and healthcare. In her professional role, she facilitates and provides the patient / family perspective and supports frameworks and strategies for patient partnership in health care policy, system design, innovation & improvement. 

Prior to joining CFHI, Julie was a career public servant who worked as a senior advisor and director in strategic policy, planning and reporting across many different files – with an emphasis on building and leading policy strategies in collaboration with intersectoral partners and teams. She developed the federal tobacco control strategy (Part2), the framework and strategy for including persons with lived experience into the policy direction of the federal opioids task force and, developed a multi-layered engagement strategy and the provincial Patient Declaration of Values as the former chair of the Minister’s Patient and Family Advisory Council for Ontario. 

Julie serves as a board director with MitoCanada Foundation and the National Centre of Excellence, SKIP – Solutions for Kids in Pain. She is a patient partner with the Canadian Medical Association Patient Voice and chair of the Provincial Paediatric Palliative Care Family Advisory Committee (Ontario).

As the mother of a child who was diagnosed with SIFD, a rare form of mitochondrial disease, Julie has particular experience in system navigation, complex care, care coordination, palliative care, and patient safety. With over 12 years of experience as patient / family advisor and leader, Julie is a sought after speaker, panelist and facilitator. She regularly consults with healthcare organizations, government, private sector and not for profits on patient engagement strategies, patient partnership, and patient leadership.

 

Videoclips

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You know what? Building trust came through conversations and it came through mutual respect and that mutual respect built about me sharing my experiences and this researcher being open about his experiences, him being open about what he was interested in investigating but also me being able to share with him what I felt was important to investigate and what would change our life and I have to say, probably the most singular moment of building that trust was when I brought my five-year-old daughter to visit his lab and you can imagine a five-year-old running around a lab with lots of really interesting microscopic equipment and Petri dishes and touching everything but the team were thrilled to have her there. What it did was it made it real. It made their work real. They saw the person whose life that they were impacting through the very basic research that they were doing and to this day I’m still connected to members of his team that worked in his laboratory around mitochondrial disease and mitochondrial dysfunction. 

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Patient partnership is a mosaic and there has to be a multitude of approaches, I think both in respect to the patient partner but also to the researcher and I talk about – you know, oftentimes when I’m talking to leaders in health care and I’ll include researchers in that, pick one thing. Pick the one next thing that you can do to facilitate better collaboration with patient partners. It doesn’t have to be throughout the entire research project that you’re working on with a very, you know, robust and longitudinal patient partnership framework. Maybe it’s one thing and then the next time pick one more thing and start to grow and expand that. 

I think the same advice goes for patient partners. I might not be ready to, you know, fully commit to a two or three year research project but I might be willing to sit down with a team of researchers and figure out what is the question. What are we looking at doing here? What is the purpose or the objective of the work and work in a short term capacity on that. Or I might be willing to be – as I have before to be a study participant and I see that again as another short term opportunity. So I think there’s space for all of us in this either from a long term commitment perspective or from short term commitments. I think it’s looking at it together and deciding together what the best approach is. 

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So supporting engagement and partnership in research starts at a level of first of all identifying who those patient and family and caregivers are that want to partner. And so I think we’ve got to be really public about the opportunity. I think we’ve got some – a really great baseline to start with with the introduction of SPOR, the Strategy for Patient-Oriented Research from CIHR. I think we want to open up that opportunity to more people. I’m not sure everyone is aware of that. 

So being more open, being more public about the opportunity. The second thing is that not everyone is sure what they can contribute to research. So training and I’ll use that word loosely, but training patient partners and training researchers at the same time in the same room as to what it means to partner in research. What is it that we’re here to do together? What does that look like? And I say doing that training together because levelling out the power differential is very important. I don’t think it’s as strong a power differential as it is with clinicians and patients but there is in researchers. I felt that when I first met the academic that I was working with, the researcher I was working with. What’s this mom going to contribute? And then once we started to have that conversation together he realized I did have a lot to contribute.

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In terms of barriers, I would suggest – I think this is probably mutually agreed upon by everyone that we need to make sure that we’re compensating our patient partners appropriately and so to date that’s been really about expenses. I would argue again if we’re going to be examining this power differential, if we’re going to be really looking at the – valuing the knowledge and the wisdom that patients bring to the conversation and we know through evidence that there is knowledge and evidence that they’re bringing and it is shaping policy, programs, research, then we need to compensate for that and I don’t think we’ve come very far as an entire community about really valuing that from a compensation point of view and that’s challenging, right? 

We’re in a state right now of fiscal restraint and resources are limited but if we’re truly going to be doing this work together and making sure that we have again diversity and equity – you’re going to be getting the same people who have the time, the availability and the resources to engage unless you’re actually starting to compensate for communities who might not have the time, the resources and the financial ability to participate. So it levels the playing field and it ensures that we’re getting diverse perspectives and that’s important especially in research. 

And patients and families need to be included in what does that compensation look like and compensation can be applied as sort of a blank approach. It really has to be up to – it can be individualized. Some patients and families want to volunteer. They want to simply – they’re thankful to be at the table and this is their contribution. Others can’t effectively contribute unless they’re compensated. They’re taking time away from work. They’re taking time away from caregiving. And still others, we need to think about as I said earlier, about how do we compensate in a way that supports them. It might be offering respite. It might be offering transportation. It might be, you know, offering some sort of per diem. I think there’s different models and different ways and that we have to individualize it to the needs of that patient partner.                     

Some patient partners are on disability and they can’t accept financial compensation, right? So there’s – but they could accept transportation and respite and … Yeah. There’s creative ways to do this. 

Or some people feel that if they get compensated that they’ve then drunk the Kool-Aid and that they have to align themselves with, you know, either the findings of the researcher or the priorities that they’re setting and that they can’t be as objective or as much of a positive disruptor as they could be if they weren’t being compensated. I take issue with that because I’m on a payroll and I am definitely not someone who aligns myself necessarily with the views of the organization. I’m there as a positive disruptor and as an advisor.