Hi everyone! Welcome back to onePERspective – a recurring 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.
Before I get into today’s episode, I’d like to announce that our study that inspired this overall podcast has been published in BMC Health Research Policy and Systems. It’s freely available so check it out by searching its title - “Future directions for patient engagement in research: a participatory workshop with Canadian patient partners and academic researchers.”
Ok. Now back to today. Kathy Smith, a patient partner from Thunder Bay, offers her key take-aways and applications from last week’s episode of asPERusual focused on the Strategy for Patient-Oriented Research Evidence Alliance. All of the views expressed are her own. Kathy, please take it away with your onePERspective.
Kathy Smith:
Thank you, Anna and welcome listeners. These podcasts sure have some awesome strategies for building and strengthening the lived experience voice in research. And the hits just keep coming!
There are recurring themes in all the podcasts. The top three features of the SPOR Evidence Alliance Network that really resonate with me are:
its crafting of a strong collegial community of partners;
its focusing on the flexibility in partnering; and
the co-creation of training modules that support patients engaged in research (PEiRs) to engage in the variety of opportunities.
Partners Andrea Tricco, an academic researcher, and Linda Wilhelm, a lived experience patient were right in step communicating their shared vision and values. They could even jump in and finish each other’s sentences! Yet, they live 2000 km apart. That congeniality was forged over many years of communicating while working together in a variety of healthcare settings. All models of patient engagement stress this recurring theme: strong communication is the foundation for a positive engagement environment. And building to this level of comfortable, congenial communication takes time - a patience of time - to do it right!
For almost a decade, the Canadian Institute Health Research (CIHR) financially supported the building of the pan-Canadian Strategy for Patient Oriented Research’s (SPOR) Evidence Alliance Network. The Alliance Network was co-designed by academic and experience experts to promote evidence-informed healthcare and policy “that is grounded in the principles of inclusion (all relevant stakeholders) diversity, integrated knowledge translation, co-creation of research and transparency.” The Evidence Alliance team is now focused on growing the patient voice at the policy and decision-making governance level so patients engaged in research can move closer to a co-leadership role. As a former researcher myself, I can appreciate how long and hard this team must have worked to shift the paradigm and how much they relied on CIHR’s substantial, sustainable source of funding support. It takes time and money - a whole lot of precious money - to do it right.
The flexibility built into the Alliance Network’s model of patient engagement encourages a diversity of voices. Everybody is different in where their strengths and passions lie and what they can do. While patients do need to be engaged all along the entire continuum of a research project, different patients can engage anywhere along research process. The Alliance has described the tasks at each research stage to help patients decide where they can most meaningfully engage – match what tasks at what stages best suit their knowledge, lived experiences, preferences, and passions. and interests and time.
Some of the stages the Network outlined for patients to select where to partner include:
Ideation and co-creation of a research query as co-authors, even senior authors
Co-design of a project
Project participation in focus groups and workshops
Rapid Reviewer or Systematic (deeper delve) literature search of a query
Project evaluation
Knowledge translation and dissemination
Focus groups like appreciation of patient participation in a study
Lead investigators of their own research queries: for the patients by the patients
Governance and policy making to implement patient-centric systemic change.
Along with describing flexible engagement opportunities at every stage of a study, the Alliance has co-created many important supports for both researchers and patients. The Alliance identified the equity of access gap in background understanding of the research ecosystem. The Network’s patient partners co-created training modules that train for engaging for each of those flexible engagement opportunities. Knowledge is power. The training modules empower a diversity of patients to partner confidently and competently. The Alliance also co-designed capacity building tools to help researchers learn how to engage with patients. And the Network facilitates matching patient partners with relevant research projects.
Like the Canadian Cancer Society and the EMPACT PER platforms, the Evidence Alliance has really put a lot of insightful effort into helping PEiRs knowledgeably, meaningfully, and respectfully engage in research studies anywhere along the continuum - from conception to completion and dissemination of a study. I’m happy the Evidence Alliance is working to embed the voice of patient and public partners within leadership and governance decision-making councils. Id like to see this momentum continue further up the food chain – patients partnering with public and private funding sponsors.
All the PER initiatives described in all these podcasts will go far to change the culture of the research field into one that welcomes and supports PEiRs as equal and rightful members of a “better together” research team.
PERsonally Speaking – Points to Ponder
Let’s get going!
Focus on patient appreciation: Set up a multi-stakeholder steering committee to conduct a scoping review of Patient Appreciation with the goal of creating one gold standard. This important topic is being studied and funded by far too many small, solo, siloed groups. Who should lead this study at a national level?
Let’s keep on going!
To eliminate health disparities between the mainstream majority and the marginalized minorities, we must ensure the PEiRs represent ALL the communities served. Create an ongoing checklist to evaluate the equity, diversity, inclusion (EDI) of patient engagement in research.
Are we there yet?
Can all engagement models out there now be rolled into one robust national model of patient engagement in research? Many, many healthcare groups have now co-created their own very helpful and insightful models for patient engagement in research. Are we ready to collaborate and incorporate all existing model into one gold standard model of patient engagement? Who will be assigned the lead for this?
Anna:
Thanks again Kathy for offering your ONEperspective. I really appreciate how you tie together key learnings from within and across season 2’s episodes. I also love how you leave the listener with some points to ponder that can help guide their own future work.
For anyone especially interested in Kathy’s first point to ponder. That is, patient partner appreciation policies, Grace Fox (who is a colleague and Season 1 Episode 2 asPERusual guest) led a recently published review based out of the Ottawa Hospital Research Institute. This review set out to assess the prevalence of reporting patient partner compensation; specific compensation practices reported; and identify benefits, challenges, barriers and enablers to offering financial compensation. I’ve posted a link to the freely available publication on our podcast’s website, or you can find it by Googling its title, “Recognizing patient partner contributions to health research: a systematic review of reported practices.”
As always, 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 - these make my day! In 2 weeks, I’ll be back with guests Norm Buckley and Delane Linkiewich, who will be telling me all about the Strategy for Patient-Oriented Research Chronic Pain Network. Until then, try to find gratitude in every day and let’s be sure keep working at making patient engagement the standard, or as per usual.
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