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Patient-Engaged Research: A Conversation with Crystal Chin

As a former patient and current Patient Advisor with Holland Bloorview Kids Rehabilitation Hospital, Crystal Chin collaborates with Ontario’s health care leaders to ensure that the patient voice is part of the conversation. Crystal has a deep understanding of the importance of patient engagement in research—and she sat down with Catalyst to share her insights.

Crystal Chin: patient, advisor, collaborator

Diagnosed with spastic diplegia cerebral palsy when she was 8-months-old, Crystal Chin understands the patient experience. After immigrating to Canada from Taiwan at age 10, she began receiving care from the nurses, physicians and health care allies at SickKids and Holland Bloorview Kids Rehabilitation Hospital. Bright, insightful and passionate, Crystal began to take on advisory roles in several organizations throughout her mid-teens, beginning with her former role as the Co-Chair of the Youth Advisory Committee at Holland Bloorview. Only in her 20’s, she has made significant contributions to improving patient engagement and care delivery through her efforts at such organizations as Holland Bloorview, Health Quality Ontario, The Change Foundation, Patients Canada, and the Ontario Brain Institute. Crystal’s influential work as an advisor and her insight into the patient experience have underscored her role as an advocate for other patients in the Ontario health system. She is frequently sought after to be a conference speaker and panelist, and earlier this year, she was named as one of The Change Foundation’s 20 faces of change.

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Crystal Chin. Photography courtesy of Holland Bloorview Kids Rehabilitation Hospital.

As a patient herself, Crystal has always been engaged in health care at a clinical level, and getting involved in research was a natural extension. Since 2013, Crystal has been a Patient Advisor on the Research Family Engagement Committee at Holland Bloorview Kids Rehabilitation Hospital, where she brings the patient voice to new research initiatives, helping to ensure that engagement is meaningful to both researchers and patients—the people to whom it matters most.

Catalyst: What makes patient-engagement in research meaningful?

“The Research Family Engagement Committee meets once a month to advise researchers on areas where their research may not be meaningful to the actual patients who will benefit. For example, in order to be meaningful for patients, research should be accessible. A researcher seeking patient participation three times a week at 7:30 am may be inadvertently creating barriers to patient engagement. The patient voice brings equilibrium to research, and increases its efficiency by pointing out potential roadblocks that researchers may not see. Patient engagement is meaningful when we co-design the research process and structures to ensure that they are suitable, useful, and accessible to patients.”

Catalyst: Does patient engagement in the research agenda require a different approach than patient engagement in clinical care?

“Clinical care and research have differences, but the larger concepts apply to both. For example, driving a car is different from driving a minivan, but conceptually they are the same. In both cases, we are driving, but the sightlines are different, the blind spots are different, and in one case we have more people in the vehicle. Clinical care is more individual and personal, and physicians have the opportunity to engage with their patients directly. On the other hand, research deals with entire demographics—not just with one child with diabetes, but with all children in Ontario with diabetes. In that sense, it requires different considerations and education, and deeper analysis. Despite these differences, however, to engage patients in the research agenda, the overall approach remains the same. In both cases, we need to ensure that the patient voice is the foundation that informs the work.”

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Crystal Chin. Photography courtesy of Holland Bloorview Kids Rehabilitation Centre.

Catalyst: What advice do you have for patients looking to engage in health research?

“Health research can involve nuanced language, questions of ethics, and technical methods that can be intimidating for patients looking to get involved, but you don’t need to have a PhD in policy or medicine to be a patient or a patient advisor. Lived experience—a patient or care giver’s narrative—is a valid information source for informing the health research agenda. With new initiatives such as Patients First: Action Plan for Health Care, the health care system is on its way in to embracing the patient voice more fully, and I look forward to collaborating further as we move forward.”

Moving forward with patient engagement

We have seen an evolution in how we think about patient engagement in health research and care. At one time, we though that researchers and care providers were doing things to patients. We later reformed our understanding that they were doing things for patients. Today, we are starting to think about health research and patient care as a collaborative effort with patients, carrying the patient voice through from the clinic to the lab bench. Meaningful patient engagement improves efficiency and informs quality in health research, leading to more meaningful outcomes for patients. It’s important to have people like Crystal Chin bringing the patient perspective not just to the health care system in Ontario, but also to the research agenda.