For Carla Heggie, health research starts and ends with patients—they are the source of the data that drives discovery and the recipients of the knowledge it generates. We sat down with Carla to learn more about the need to truly involve patients in research and to hear the story that inspired the new MSSU logo.
You’re one of our longest serving patient advisors. How did you first become involved with the MSSU?
I was brought onto the Data Platform and Privacy Committee because they were looking for someone who not only had patient experience but also had experience in the field of privacy. Someone who understood what the concerns were with regards to data matching, data mining, and what could and couldn’t be done under information access and privacy legislation. It’s a pretty specific skill set that they were looking for—and they found me.
This is a useful reminder that patient advisors bring their whole selves to research—all of their expertise, talents, and experience can benefit research.
Definitely. From my professional stand point, I’m fascinated with the concept of patient-oriented research and the privacy implications to patients. How do we ensure that researchers know and understand the privacy implications? PHIA, the Nova Scotia Personal Health Information Act, covers the patient while they’re in the ‘circle of care’ but patients are not always in the ‘circle of care’ when they’re participating in research. The use of RFIDs—radio frequency identifying devices—in medical implants for research purposes is one really interesting example.
Matching patients with research happening in their specific areas of interest or expertise is also an important way to avoid tokenism—a real concern when the Canadian Institutes of Health Research (CIHR) Strategy for Patient-Oriented Research and the MSSU first started up. Putting someone on a niche committee who has no idea what is being talked about, that is a token patient. That is not the case in my circumstance.
I happen to know that your involvement with MSSU is just one of many ways that you’re contributing to health-related research. Can you tell us more about your involvement and a bit about what motivates you?
Ever since I was 23 years old, I have been a member of my own medical team. It wasn’t until later in life that I realized that this was not always the case for all patients. A lot of people do not have a voice in their own medical care. Because I was empowered as a patient, I’m able to speak with other patients, with researchers, and with medical clinicians and specialists to be able to say, “This works. This can be done.” Because I’ve had multiple surgeries with different types of anesthesia including spinals, epidurals, general anesthetics in large quantities, and because of my experience with pain, I’m a patient consultant for the Nova Scotia Anesthesiology and Pain Research Group. I also do some peer-review of grants and am a peer-reviewer for the CIHR.
For patients, research improves care. I also truly believe in giving back to a system that I have had such benefit from. Medical orthopedic research has kept me walking all these years and decades. So there is the concept of giving back.
Again, we can see how you’re contributing to research that is relevant to your experience and expertise. Is this an important consideration for researchers who are engaging or hoping to engage patients in research?
I think what’s important for people to understand is that not all patients are created equal. We all bring different skill sets, different life experiences, different patient experiences. I think at one point there was some belief that we all fit into the same mold and we don’t. The same goes for patient caregivers. My husband knows what it’s like to sit in an emergency room and watch me almost die. He does not have the experience of being the person lying on the gurney, almost dying. His interaction with the health system is totally different from mine. They are both valid perspectives. But, my husband cannot speak for me, any more than I can speak for his experience.
It’s about connecting the right experience with the right research.
Once that initial connection is made, what advice would you give researchers who are engaging patients in their research?
Talk to the patients! Patients are people. Some are shy, some are outspoken. But, we all have a story to tell. Some of the stories may be boring; some may be pretty epic. But ask yourself: If you’re doing patient-oriented research, who is it for? Patients. So why wouldn’t you talk to them? Why wouldn’t you ask them what they want? Maybe they don’t want research done in red, green and blue. Maybe they want research done in purple. How would you know? You can’t assume.
It sounds simple, but a lot of people don’t talk to patients. There are still a lot of academics and researchers and maybe clinicians who see patient-oriented research as being any research that involves patients—but that it doesn’t have to have patient involvement. There has to be patient involvement. To me, that means that the patient has a voice. Saying ‘My research is about patients therefore that makes it patient-oriented research’ is just as bad as saying ‘My research isn’t about patients, because it’s all epidemiology and statistics—it’s just data.’ No, it’s not. We are the data.
That statement was part of the inspiration for the new MSSU logo. Can you tell me a bit more about what it means to you?
That statement was born out of frustration with a group of scientists who didn’t understand why they needed to have a patient on their committee or working group. The patients couldn’t get across their view to the scientists and the scientists couldn’t explain their position to the patients. Until one of the scientists said: “I don’t deal with patients. I deal with data and interpreting data.” And, I looked at her and said, “Who do you think the data is about? We are the data.” And it was like a light went on. She got it. It’s about seeing the patient. Do you see the patient in your research? And, if you see them, they need to have a voice in your research as well.
Carla Heggie is a certified Information Access and Privacy professional and a professional facilitator. She consults in the field of policy, information access, and privacy, and teaches courses in privacy at Dalhousie University. In addition to being the longest-serving MSSU Patient Partner, Carla is a patient consultant with the Nova Scotia Anesthesiology and Pain Research Group. She is also a trainer for the SPOR Foundations in Patient-Oriented Research courses offered through the MSSU. Carla and her husband enjoy traveling and their next adventure is to Antarctica.