S2E4.5 - onePERspective As PER Usual

In this feature segment of asPERusual, guest listener and patient partner Kathy Smith offers a short recap and her key takeaways from last week's episode focused on the SPOR Chronic Pain Network. She also leaves you with "points to ponder," including her vision for the future of Canadian patient engagement in research based on her personal experiences and all we've heard in Season 2 to date. Whether you haven’t yet listened to last week’s episode, or you have and are interested in hearing someone else’s take on it, this short (~10 minute) segment is for you! As a heads up -- the episode opens with a notice about the "Health Data for All of Us: Earning Trust Through Transparency" public forum that is being put on by Health Data Research Network Canada on April 23rd, 2024. Keep listening for more details about this free and exciting hybrid event.
Episode Transcript:
Anna:
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 Research Chronic 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 deve