A Patient Partner’s Reflections on the Infoway Partnership Conference

By Colleen McGavin

As one of the patient partners awarded a scholarship to attend this Patients Included conference, I was very grateful and pleased to be able to bring a patient lens to the event. We were warmly included and appreciated at the Partnership Conference. Because of my personal experience as a cancer patient who was treated in many care settings over more than a decade, I’m passionate about wanting to see change in how health records are managed and shared in this country, and I was encouraged to see advances being made.

Presentations and videos of plenary sessions from Partnership are available online.

Some highlights for me included the panel discussion that included Dr. Trixie Gregoire, a primary care physician from Nova Scotia, and her use of technology to communicate with her patients. I found myself wishing I had that capability and being surprised to learn that she does it mostly off the side of her desk in a fee-for-service system that doesn’t have a business model to support this kind of service.

I was interested to learn about Infoway’s PrescribeIT initiative, which will allow prescribers to communicate directly with pharmacists electronically, thus avoiding errors and allowing for much better tracking of factors such as medication adherence. Imagine, no more fax machines! It’s something that seems like such a “no brainer” in this day and age.

And the presentation by Dr. Edward Brown about the Ontario Telemedicine Network, which supports what I’ve long believed, based on my family’s experience dealing with my father’s congestive heart failure. That is: when you have a chronic health condition, greater access to one’s own health information and timely access to health care providers can empower patients and families, greatly alleviate stress and strain, and avoid unnecessary visits to the emergency department.

I was chagrined to learn that Canada still ranks near the bottom of the Commonwealth Report rankings. Yes, we’ve moved from 10th out of 11 to ninth place, but apparently that’s only because France did worse last time around and moved below Canada, not because we got better. I was intrigued to see that the UK is still ranked No. 1, and I can’t help wondering if that doesn’t have something to do with the fact that patient and public involvement in health care quality improvement and health research is more embedded in their culture, as they have been doing this for more than 30 years.

But it was, perhaps, the presentations that brought patients’ experiences in their own words into the room that had the greatest impact. There was Greg’s story, bravely told by his family, of how a siloed system that didn’t share health information caused the tragic death of their young son and brother. And everyone was riveted by Dr. Lafontaine’s audio clips that brought the voices of Aboriginal people talking about their shocking lived experiences into our consciousness. Stories like these serve to crystallize the reason why everyone was there: to create a better health care system for people.

I was proud of my fellow patient-partners when they raised questions about important topics like privacy. The discussion around our patient partner table was lively as we debated the merits and pitfalls of allowing greater access and sharing of health records and made me think that it’s time we had a deliberative dialogue in this country to get an accurate pulse reading on what ordinary citizens think about these issues. I suspect many are like me: when I was a patient, it was shocking to find out how siloed our health records have traditionally been and that even though I technically own my own data, it’s nearly impossible to get it in a timely way. So now I speak up for electronic sharing — not only among health professionals and patients so we can make informed decisions together, but with health researchers so that we can create knowledge that will improve the system overall. But I know others feel differently and still fear what might happen if the wrong people get their hands on this personal information. So, we need to become educated and talk about it so we can understand all the potential risks and rewards.

Finally, I was most intrigued to hear Infoway’s board chair, Dr. Peter Vaughn’s, frank comments about how thoroughly entrenched our health care system is, and how difficult it is to innovate because of people’s unwillingness to change. I couldn’t help thinking that patients, being outside that system but profoundly impacted by it, might be the greatest disruptors. They might be the ones to break the log jam that makes it difficult to scale up and sustain the many great ideas that have been piloted in this country. But, for that to happen, more patients need to be on leadership panels, sitting in board rooms and, as my fellow patient partners put it so eloquently, “walking shoulder to shoulder” with those who are working on their behalf.

I hope by highlighting these presentations and people, others don’t feel left out. I’m certain that all the things I heard and experienced at the conference will resonate with me for days and weeks to come. Thanks to all the presenters, and to Canada Health Infoway for including patients!

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About the author
Colleen McGavin

Colleen McGavin

Colleen McGavin is a member of BC’s Patient Voices Network and has been an active patient partner in numerous quality improvement and health research projects since 2010. She is passionate about the need to advance integrated digital health information and its use for improved patient outcomes and health research.