Hi everyone! Thanks for tuning into asPERusual - a podcast for practical patient engagement. This week we have another installment of onePERspective, a special segment in which a guest listener offers their individual (or one) PERspective on the previous week’s episode in the form of a short episode recap and their key takeaways. All of the views expressed are their own.
If you haven’t yet listened to last week’s episode in its entirety, or you have and are interested in hearing someone else’s take on it, please keep listening to hear what Kathy Smith - a patient partner from Thunder Bay - has to say. Kathy is a cancer survivor and a cancer care partner actively engaged as a patient partner in many healthcare research projects and initiatives. This segment was inspired by the thoughtful reflections she’s shared with me on our podcast episodes since the start of asPERusual. Over to you Kathy.
Kathy Smith:
Hello everyone, and welcome to another onePERspective. Because we're always better together, building a research community where every type of stakeholder is involved, every member feels valued, and everyone's voice is heard is tantamount to producing rigorous and relevant research outcomes. If we want to try to eliminate health disparities between the mainstream majority and the marginalized minority, we must ensure that the Patients Engaged in Research (PERs) represent all communities that are served. And all are engaged meaningfully and respectfully from start to finish of a project.
Today's podcast gave us a great tool, or as Ambreen called it, a “Lego box” full of intersecting pieces to help us build a model of engagement with equity, diversity and inclusivity called EMPaCT - Equity Mobilizing Partnerships and Communities. EMPaCT was co-created and co-designed at a table where a diverse group of patients made up the majority of the team, along with researchers, administrators and policy decision makers at Women's College Hospital in Toronto, Ontario. That balance of team players is a more realistic representation of the actual composition of health care stakeholders, don’t you agree?
I was intrigued by EMPaCT’s decision to reverse the order of EDI (equity, diversity and inclusion) into what they considered a much more accurate and meaningful and important order of evolution. That is “DIE” : d or diversity, inclusion, and then finally equity. Why DIE? Why has EMPaCT ordered diversity first? They felt we needed to identify all the marginalized communities and recruit members to build up a representative team “from the margins in.” This balance of representation creates a safer space for sustainable inclusion. People are feel safer. They are not as likely to leave the group.
Here are just a few of the LEGO pieces I gleaned for the three DIE processes in EMPACT’s LEGO box. I encourage you to listen to the entire podcast, as it's chock full of helpful hints about what worked well for them in addressing health disparities and research diversity.
Diversity - To build up relationships with marginalized and underrepresented minority communities, the team must listen and learn about their lived experiences, which includes many trauma-informed approaches, health care, misgivings, and avoidance. This knowledge of their historical and cultural diversity will go a long way to avoid doing any unintentional harm. The team must build capacity one relationship at a time, and this takes time. Time builds trust. Time builds knowledge and respect. Time and respect yield meaningful collaboration. Or, as George Harrison sang long ago, it takes a patience of time to do it right. Funders must acknowledge this fundamental step and financially support this. Getting to know you takes adequate time and funds.
Inclusion - EMPaCT’s team was weighted with the right balance of voices representing diverse groups. No one felt they were just a minor team player — a token tick box member — at a table made up mostly of scientific researchers and academics. There is strength and confidence in numbers. The PERs felt vitally important to the process. They felt included as respected partners. They operated within an inclusive, representative community. A sustainable, culturally safe space where their diverse voices were in the majority. Power is such an entrenched issue in research projects. Could this model of a collectively governed, co-designed project with a larger PER involvement benefit other researchers? Only if the funders are on board with adequate support. They must be present at the table to understand and appreciate the time and the money necessary to incorporate EDI.
Equity - This is not the same as equality of access. Equity of access means everyone has the opportunity to engage. It addresses the removal of systemic barriers and biases. Equality of access means everybody can access that opportunity. But we know there are fundamental barriers to equality of access like geographical and isolation, language barriers, temporal, physical or financial constraints. Digital tools hold much potential for addressing gaps in equality of access. EMPaCT’s team is working now on how to add new IT and IT tools into that Lego box for EMPaCT.
The EMPaCT model of engagement is not static. It is ever evolving, and research partners need to fit the model to meet their key objectives and action oriented measures as collaboratively outlined by a team with a strong commitment to and understanding of EDI and its importance to the research. There is so much more you will glean in this podcast that will help you become a champion of change for eliminating health and disparities in research.
I have some extra points to ponder:
Is the EMPaCT EDI model of diverse and inclusive engagement, always the right fit for every research project?
Can researchers expertly apply the principles of EDI within their short time frames and tight budgets?
As research stands today, should there be a national repository run by expert navigators to match the right PERs to the right research project?
Anna:
Thanks again Kathy for offering your ONEperspective on last week’s episode. It has hopefully inspired those who’ve listened to further reflect on their key takeaways from last week, as well as inspired those who have not listened yet to check out the episode on our website asperusual.substack.com or wherever it is that they download their other podcasts from. We’ll be back again in two weeks, where we’ll be kicking off our series aimed at increasing awareness and understanding of existing Strategy for Patient-Oriented Research entities with guests Andrea Tricco and Linda Wilhelm from the Strategy for Patient-Oriented Research Evidence Alliance. Until then, please feel free to shoot me an email at anna.asperusual@gmail.com with any comments and episode ideas. Enjoy the rest of your week and lets be sure keep working at making patient engagement the standard, or as per usual.
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