Patient engagement: a “paradigm shift” in health research

BioCanRx Cancer Stakeholder Alliance Learning Institute

Engaging with patients has changed Brittany Umer’s career focus – and, she believes, will help to shape the next generation of health researchers.

For the past two years, Brittany, a medical microbiology PhD student at the University of Alberta, has participated in the BioCanRx-Cancer Stakeholder Alliance Learning Institute, held as part of BioCanRx’s annual scientific Summit for Cancer Immunotherapy. The Learning Institute pairs cancer patients, caregivers and stakeholders with graduate students and post-doctoral fellows studying cancer immunotherapy with the goal of bidirectional knowledge exchange, partnership creation and collaboration, and knowledge dissemination. Brittany also served on the committee that developed the Learning Institute, giving her a unique vantage point.

Initiatives like the Learning Institute are creating a paradigm shift for today’s trainees, she says, giving them experiences that will stay with them as they move up to become the new generation of health researchers.

Her experience has changed the way she approaches her research, to consider the patient perspective much earlier in the process. For instance, her research is investigating a combination of radiation and immunotherapy to treat breast cancer and now she considers whether the combination is even feasible – is it possible for a patient to have radiation one day and return the next day for an immunotherapy injection? And that, she says, is a direct outcome of her engagement with patients.

“It is really fulfilling to link your research back to the patient,” she says. “Patient engagement, patient advocacy has become a real passion.”

She also finds she can talk to patients and other non-specialists in a way that is meaningful to them, without “dumbing down” the content.

“I know ways I can change my scientific talks to be more accessible to patients,” she says. “It’s how you tell your story, not how complicated the science is.”

BioCanRx Scientific Director John Bell was originally a skeptic.

“I didn’t really appreciate the full potential of engaging patients,” he says. “As a hard-core molecular biologist, I wasn’t sure how valuable these interactions would be.”

Dr. Bell stated that it was “very gratifying” that patients, students, and post-docs could all benefit from the Learning Institute experience. This initiative is unique in its capability to facilitate interaction and understanding of different perspectives.

Brittany agrees, noting that, while at first it was more about her translating science to patients, now she realizes that “they teach me more than I can teach them.”


About the Author: Heather Blumenthal has been writing about health and health research for more than 20 years and never loses her fascination with the advances Canadian researchers are making.

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