Beloved Economies : Transforming How We Work (9781774582381) by Rimington Jess; Cea Joanna Levitt

Author:Rimington, Jess; Cea, Joanna Levitt
Language: eng
Format: epub
ISBN: 9781774582381
Publisher: Smashwords
Published: 2022-06-08T22:36:45+00:00

Sourcing from multiple ways of knowing in action

In order for the Heart Research Alliance to successfully build a patient-powered research network, facilitators Brooking Gatewood and Rebecca Petzel put great care into ensuring the culture of the design process was built around the needs of those who had the most at stake as well as the expertise gained from lived experience: people managing and living with atrial fibrillation (AFib) and other heart conditions. This happened in several ways.

Patients were treated as the primary experts in the room from day one. Additionally, patients with heart conditions were the majority of participants in the research design process. This was critical to shifting the balance of power away from doctors and researchers, who have the default authority in business as usual, allowing patients to drive the conversations. Centering patients’ voices required more than just numbers; facilitators worked together with participants—including patients, doctors, and researchers—to set expectations based on the realities of patients’ lives. Attendance was expected to fluctuate based on participants’ health, and medical jargon was broken down into accessible terms. The culture and ground rules that participants co-created enabled conversations that rarely occur at the hospital or in medical research settings.

“Patients have lots of great ideas; we just aren’t used to framing it the way a researcher can,” shares Debbe. “It’s two different languages. There’s research and there’s living with it. It’s like there’s a medical language and patient language.” The culture and ground rules, along with support from the facilitators, made it possible to source insights from both these languages. “Every time that the researchers and clinicians got too far ahead, the facilitators slowed them down. They made sure the patients were comfortable, they made sure we understood, they made sure we caught up. And if we got off on a tangent, like ranting... which we do sometimes... they would pull us back to the center and go, ‘Okay, so here’s actually the question.’”

Debbe reflects on how Heart Research Alliance’s success in identifying research questions with groundbreaking implications for patient quality of life would not have been possible without sourcing from patients’ unique ways of knowing: “Like most patients, I know my disease very well, and most patients who are very involved in their disease and treatment are experts at a different level, of course, than a clinician or researcher will be, but we bring a wealth of information to the table when you are talking about any disease process. Because we live with it 24/7. It’s only recently that we’ve been respected, and by that, I mean treated as experts on our disease.”

Through co-creating a group culture that values all forms of knowledge in the room, with specific ground rules and practices for bridging the “languages” that participants spoke, Heart Research Alliance not only shed light on critically important and innovative research questions but also expanded the knowledge of everyone involved.

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