Meet our guest listener
Kathy Smith: Kathy Smith is a cancer survivor and a cancer care partner actively engaged as a co-author in many healthcare research projects - including Anna M. Chudyk’s work on better understanding patient partners’ perspectives on engagement and exploring future directions for Canadian patient-oriented research. She is a patient research/awards reviewer for many organizations including the Canadian Cancer Society.
Episode Transcript:
Anna:
Hi everyone! Welcome back to onePERspective. A tri-weekly segment in which patient partner Kathy Smith shares a synopsis and key reflections from the previous week’s episode of asPERusual – a podcast for practical patient engagement. Today, Kathy will be recapping the episode in which Tracy McQuire and Linxi Mytkolli came to talk about the Strategy for Patient-Oriented Research Diabetes Action Canada, or DAC as its known for short. In case you haven’t listened to that episode, Diabetes Action Canada is a network of patients, care partners and researchers that work together to identify the health concerns of those living with diabetes and co-create research projects to address them. It is funded by the Strategy for Patient-Oriented Research, also known as SPOR for short, which is a national coalition that was created by Canada’s major public funder of health research to champion and support patient-oriented research. Alright — take it away Kathy with your onePERspective.
Kathy Smith:
Building equitable relationships is the cornerstone of an engagement strategy. Never underestimate the time it takes to build trust, transparency; understand and address/accept the inevitable power imbalances. Over communicate. Over explain. That was one of the many strong messages shared by Tracy McGuire and Linxi Mytkolli of Diabetes Action Canada. And how many times have we heard that very same message from our other engagement platform podcasters? Relationship building takes a patience of time to do it right. Once everyone gets on board and speaks the same language, you can proceed full steam ahead!
Something remarkable and perhaps unique is that DAC has a dedicated patient engagement navigator/manager on staff. What a thrill to hear Linxi and Tracy single out this dedicated manager position as an absolute “must” to set everyone up for success with patient partnering in research. The Navigator is a “niche role” that can’t be filled by just anyone. It requires someone laser focused, experienced, and well-educated in team building. This dynamic multi-tasker must train, upskill, mentor, facilitate and co-ordinate events. The Navigator communicates with each group individually and collectively. That’s a lot of work and a lot of hats to wear! And Linxi wears yet another hat to balance the wants and needs of her four “L” partner groups:
the Lived — the people who have had the healthcare experience;
the Loved — the care partners for the patient;
the Learned — the academics;
the Labourers — your clinicians and co-ordinators.
While the 4 “L”s contribute uniquely important lived experiences and expertise, each speaks with their own jargon. So, like and orchestra conductor, the navigator must blend these lexicons into a common language. “Re-calculating” as Siri tells us - aligning to collaborate, to set the goals and logistics of a co-designed study.
I was thrilled to hear Tracy describe how DAC is now gathering patient ideas for research studies and then helping patients put their ideas into research proposals as lead researchers. For patients by patients – that’s quite a mindful, patient-facing innovation. Standardized screening for diabetic retinopathy led by Dr. Valeria Rac was one such study completely driven by patient partners!
DAC stands out for its depth and breadth of patient partnership opportunities anywhere along the study continuum and for all the training partnerships that they have established as well. It’s nice to see DAC’s emphasis on evaluation. That to me addresses a big need in patient engagement. What is our value? How effective are we? What has worked well? What do we need to re-calculate? I was impressed that DAC is working at two levels with their researchers including the patient partners and with their policy makers to measure the impact of patient engagement in research. With input from all stakeholders, they have Key Performance Indicators (KPIs) - quantitative and qualitative measures of effectiveness. Tracy and Linxi, you certainly have shown DAC has a very robust engagement strategy.
Personally speaking, points to ponder
1. I love, love love Linxi’s four “L’s”! What a great way to describe the key stakeholders involved in Patient Partnering. I think one more L needs to be in the mix…The LEADERS – the decision makers and the funders – the organizations who give the projects their fuel. Maybe LEADERS feel they need to stay at arms length for impartiality. But I believe PER platforms would be better served if the LEADERs learned more about and better understood patient engagement in research. Research pivots on funding opportunities.
2. PER costs, including administrative tasks, should become a specific line in the budget funding formula. PER management is often relegated to an add-on status – a strain on an already stretched research budget. And the time to administer PER tasks is usually piled onto an already overwhelmed researcher.
3. Every patient engagement platform podcast so far has stressed the need to take the time to build a safe space where equitable relationships can flourish. It’s all about respect. And it takes a patience of time to do it right.
4. If every co-design research group could hire a highly educated, highly skilled, focused patient engagement navigator like Diabetes Action Centre has, that would be a dream come true!
Anna:
Thanks so much Kathy for your onePERspective. One of my many favourite things about the Diabetes Action Canada episode was all of the thought that Tracy and Linxi have clearly put into creating environments that truly foster meaningful and active partnerships. I also really appreciate their ability to provide very in-depth and descriptive answers and then scale back and also provide a high level summary of the big picture, increasing the accessibility of their messages to a wider audience. If you haven’t listened to the episode yourself, something else that I want to point out is that we spent a lot of time discussing evaluation in the context of patient engagement. Here, Linxi and Tracy did a great job of providing useful information about how they frame and measure different key performance indicators within the network. They also shared their intuitive approach to asking patient partner focused evaluation questions such as “what do you hope to bring to this opportunity” and “what do you hope to get out of this opportunity.” This direct and meaningful approach towards planning and evaluating patient engagement opportunities is something that I’m definitely going to bring forward in my own work.
Looking ahead — on our next episode of asPERusual, slated for release on May 12, I will be speaking with guests Catherine Street, Frank Gavin, and Kim McGrail from the Strategy for Patient-Oriented Research Data Platform. We’ll be talking about their work to engage Canadians in critically considering and reimagining the possibilities for their personal health data! Until then, please be sure to check out our website (asperusual.substack.com) for resources from today's episode, and an interactive transcript from this and previous episodes. Please also remember to subscribe to this podcast through our website or wherever it is that you download your podcast episodes. While you’re there, if you take the time to leave us a positive review, it will help others find the podcast as well. Lastly, for those of you who'd like to contact me, please shoot me an email at anna.asperusual@gmail.com. Thanks so much for tuning in! Have a great couple of weeks! And until next time, let's keep working together to make patient engagement in research the standard or As PER Usual.
S2E6.5 - onePERspective