As patient partners, how can we contribute to digital health?
I am a patient partner with focus in two areas: digital health and patient engagement.
I am naturally drawn to digital health because of my tech background and am involved in initiatives in digital health. I would like to share my most notable experience to date.
Making an impact in digital health
The most meaningful work I have been privileged to do so far is the pan-Canadian Health Data Strategy initiative. As an expert advisory group of 16 amazing, experienced people and myself, we produced three reports — the final one in May this year.
We took a vision for a seamless health data infrastructure for people living in Canada and framed a roadmap to get there. I mean what a chance to channel the frustrations of our current system into a positive direction!
Some key things I learned from this are:
- If we unite around a vision for digital health in Canada it can guide our decisions to a truly strong and flexible system
- We need to rethink our system — not rejig it
- People cross sites of care, and jurisdictions — our data should flow seamlessly with us
- We need to move to a person-centric data architecture: our infrastructure is provider-centric and runs counter to person-centric, integrated care
- We need to balance privacy considerations with the harms of not sharing data
And finally, patient partners are treated as equals when we all focus on the goal and all expertise is valued.
This was my experience on this initiative.
Building patient partner capacity
With a ton of virtual care, remote patient monitoring and other projects, many of us have become busy again after the initial lull at the onset of COVID.
I have been wondering how my patient partner colleagues are managing with this surge of activity:
- How comfortable are we partnering on digital health projects?
- Do we understand the issues well enough to offer ideas and insights?
- What further do we need or want to know?
As a co-founder of the Patient Advisors Network (PAN), founded to support patient partners in Canada, I am interested in all aspects of building our capacity, which includes working in the digital health space.
PAN has a group of patients and caregivers partnering on digital health evaluation projects for the Centre for Digital Health Evaluation and its national version, the Canadian Network for Digital Health Evaluation.
We meet monthly to share ideas and learning and talk about what we see for healthcare and how the digital infrastructure supports it.
I have experienced that we all, myself included, gain in knowledge and confidence and become more effective as partners across all our projects in the digital health world when we learn from each other.
We also learn from the experts.
This year’s e-Health Conference will be a golden opportunity for this and to explore ideas. And it will be a great place for patient partners to learn and participate.
Alies Maybee is co-founder of the Patient Advisors Network