Hi everyone! Welcome back to onePERspective – a triweekly segment focused on hearing a patient partner’s recap and reflections on the previous week’s episode of asPERusual - a podcast for practical patient engagement. My name is Anna Chudyk and I am your host. In less than two minutes, I will hand things over to Kathy Smith, a patient partner from Thunder Bay. Kathy is once again set to offer her onePERspective on last week’s episode of asPERusual focused on the Strategy for Patient-Oriented ResearchChronic Pain Network. All of the views expressed are her own.
Now before I hand things over to Kathy, I would like to briefly bring your attention to a public form that is being put on by Health Data Research Network Canada on April 23, 2024 in Montreal Canada. The forum’s title is Health Data for All of Us - Earning Trust Through Transparency. If you are interested in joining academic researchers, community groups, members of the public, industry leaders, and policymakers in timely and thought-provoking discussions about the issues of trust and transparency in the use of health data in Canada, this forum is for you! This day-long event is open to the public, and a hybrid event, meaning that you can attend virtually or in-person. You should note however that there is a charge of $10 if you would like to attend in person and are a member of the public, a community group or student; the tickets go up in price dependent on whether you are a researcher or from the public or private sectors. The stellar lineup of speakers includes health data researchers, data equity advocates and patient partners committed to building trust among the public in the access, use and sharing of health data. There is a limited amount of available tickets so be sure to snag yours - we’ve posted a link to the event on our Substack or you can always Google, Health Data for All of Us - Earning Trust Through Transparency public forum. I’ll be checking out the event virtually so hopefully I will see you there!
Alright, now over to you Kathy. Please take it away with your onePERspective.
Kathy Smith:
Thank you, Anna, for all the hard work you've done to show us a variety of platforms for engaging patients in research. Readers can see common threads developing throughout each of them, but they are in for something new with the CPN’s platform. That's the Chronic Pain Network. Other chronic diseases like arthritis, cancer, heart and stroke, or diabetes engage with long standing, recognized medical disciplines with well entrenched power imbalances that are undergoing adjustments in attitude and in collaborative strategies to accommodate patients as partners. The Chronic Pain Network, made up of a multi-stakeholder group, including patient partners, were the original ones who lobbied the College of Physicians and Surgeons to recognize pain as a brand new standalone, certified medical discipline. So lived experience partners and the medical and clinical experts worked in tandem right from the get go in this brand new field of medicine. They started out as equal shareholders developing this new discipline. One group did not have dominance over the other. Their network did not have to write a power imbalance so they could move forward smoothly and quickly. Together they will be evolving the pain discipline traditions while they also grow their already strong strategies for research and supports for patient engagement.
It is significant to note that Norman, a medical member of the Chronic Pain Network, considered listening skills to be of utmost importance for building a respectful, collaborative relationship. The Lived Experience member Delane concurred. Listen carefully because much can be learned when you engage open minded. Is open mindedness then, the secret sauce to relationship building? Delaine suggested — attitude is everything.
Attitude, not aptitude, determines altitude.
As you have heard in every asPERusual podcast to date, building a strong relationship is the foundation for successful engagement, and it takes a patience of time and a whole lot of money to do it right. CIHR (Canadian Institute for Health Research) was their long time financial backer as they formed and set out their vision and values. They've even branched off a pediatric pain subnetwork for their special needs and interests. Time and money help this diverse group of stakeholders create high functioning committees that have worked to educate all future health care professionals. Norman suggested that researchers, as well as patients, could access their shared body of knowledge through the hub to connect, contribute, collaborate, and learn more about chronic pain etiology and treatments. Access is set up through the Canadian Pain Network’s website. It's really nice to see such cooperation and collaboration and equality in the relationship. Research studies for patients led by patients are also now in the works in this brand new co-created field of medical discipline. Well done all.
PERsonally Speaking – Points to Ponder
This time it's just one. There is a current ad on TV enticing potential lottery winners to dream big and then to dream bigger. Is patient engagement in research ready to do that too?
I dream of an epicenter — a national umbrella for all visions and missions from all of these great platforms for engaging patients in research. AsPERusual is highlighting excellent patient engaged in research plans with common strategies and some uniquely suited to their focus group. Ones like the Canadian Cancer Society supporting patient-oriented research, EMPaCT, and the Canadian Pain Network, with more groups yet to come.
But if research during the pandemic taught us anything, it was that the sum is greater than any of its parts.We saw research moved further and faster when it was handled on a collective, large scale, under a global umbrella, and not in individual silos.NATO was a very effective good example of a sole source funding agency and a network of networks facilitating military research around the world. They teamed up, they divided the tasks, they subtracted the duplications, and they multiplied their successes, strategizing for pandemic prevention and remediation.
So can all our PER groups dream big? Can we collectively create a national epi-center for all things related to engagement of patients and research? A one stop shop, a network of networks and epicenter that could be tasked to manage sole source funding for research projects involving patient engagement. A national database manager to match up the right research project requests with the right patients with lived experience. Education and training experts for both researchers and patients. Knowledge assimilation and mobilization of findings. I think this is a big gap in research. Sharing results with the general public. Perhaps my dream agency can handle that for them. Administrators for patient reimbursements using one universal tracking system. Nothing is more tedious, tiresome and stress producing for me at least than handling all of that reimbursement requirement for the different agencies I work for. Administrators to manage remuneration with defined tasks and set fees. So let's dream big.
Anna:
Thanks so much Kathy for offering your ONEperspective. I always enjoy listening to what stuck out to you the most about last week’s episode. I am really glad that you brought up the important concept of power dynamics and the recurring message related to the importance of positive attitudes, openness, and working together in true partnership. I also really appreciate you sharing how all of season 2’s episodes can be applied to creating a future vision for Canadian patient engagement in research, in much the same way as our study that inspired this podcast. I have no doubt that you have inspired others to dream big, in much the same way as you have.
As we close this episode, I’d like to remind you, the listener, to please be sure to check out our website, asperusual.substack.com, to access our interactive episode transcripts and listen to previous episodes. If you have any questions or comments, please be sure to shoot me an email at anna.asperusual@gmail.com. In 2 weeks, I’ll be back with Annie LeBlanc and Yvonne Pelling to shine a light on the Strategy for Patient-Oriented Research National Training Entity. Until then, lets try to bring an open and positive attitude to all that we do and keep up our efforts to make patient engagement the standard, or as per usual.
S2E4.5 - onePERspective