Joining the team
For Diana Lemaire, her long-standing professional role collided with a personal journey when she was diagnosed with colon cancer in 2015.
Her career has focused on the areas of care, education, quality and evaluation in different departments of London’s health delivery and research community.
“I’ve always had a curiosity and interest in how we know what we are achieving and how we are performing and improving over time”
With this spirit, she approached her battle with cancer as an observer of the process. Four years later she is in remission and has become an active Patient Partner with the cancer program, lending the whole scope of her experience and expertise to this work.
Seeing the importance of research in health care, she has started participating as a Patient Partner with Lawson Health Research Institute. She has reviewed grant proposals and also joined a taskforce looking at how to engage patients in research.
Gaining momentum
Over the last decade, there has been a major shift in the way that patients are getting involved in hospital-based research – and not just as study participants.
The term ‘patient-oriented research’ is gaining traction and has emerged as the next evolution in health care research. Involving patients across all aspects of a research project is shown to not only provide positive opportunities for the patient, researchers and health care system as a whole, but also improve health outcomes.
What is patient engagement?
Patient contributions to research activities were traditionally restricted to the role of research participant, such as participating in a clinical trial or donating tissues. This voluntary role is a vital contribution to science and the ability to continually improve care.
In recent years, patient engagement has evolved into a meaningful collaboration between patients and researchers, as patient partners become involved at different stages of research projects. This could be advice on a research question or study design, development of the research proposal or executing certain parts of a research project.
Kirk’s story
Patterson is a cancer survivor following his journey with head and neck cancer, and served as the primary caregiver for his late mother. Professionally, he has worked in the university setting and supported co-op placements for students including in research labs.
“This has become a healthy passion for me, and I’ve been involved as much as I can,” explains Patterson. “I was honestly surprised when they asked for me to share my opinion as a reviewer and really serve as a partner at the table.”
He sees the patient as a vital addition to the research team, able to provide a completely unique experience and perspective. “It is so important for those with lived experience to get involved. They are the ones with the first-hand knowledge of the patient or caregiver journey, and can offer feedback that otherwise wouldn’t be represented.”
One area Patterson sees as an opportunity is offering patient-to-patient support when someone is considering getting involved in research. “It’s incredibly beneficial for them to hear from someone who’s been through it. And, ultimately, this enhances the research project.”
The term patient is overarching and includes individuals with personal experience of a health issue and their caregivers, such as family and friends.
Why involve patients?
Involving patients in all aspects of a study ensures that the research being conducted is relevant and valuable to the people that it is meant to impact. Patient partners can also collaborate with the team to summarize and share results in a way that target audiences will value, and also with policy makers or other decision makers who can help apply the results more widely.
This approach puts patients and families at the centre. Researchers, health care providers, decision makers and patients actively collaborate to create positive changes for people’s health.
Michelle’s story
Michelle Solomon is a Patient Partner who has drawn on a variety of roles and experiences to join research teams as they prepare proposals for funding. She has lived experience as a patient and has worked as a registered nurse in the field of mental health. She is also now a PhD student and research assistant studying the mental health care system.
“It was nice to be asked. I was able to contribute feedback at a level where you can really make a difference as to how the research project will unfold, and if it will be successful in receiving funding,” says Solomon.
She adds that it was interesting to see the process and how the grant proposal was improved by having many different people offer feedback. “The end results are enhanced when you complete that kind of group consultation and evaluation. It’s much better than going at it alone.”
“As a Patient Partner, I felt the research teams I’ve worked with have been very open to feedback. And I was able to learn a lot as well, as someone who is interested in research,” says Michelle Solomon. “Everyone on the team wants to get it right. Evidence is critical for the health care system. Including care providers and patients in research leads to better decisions. Inclusive research is where it all begins.”
Patient engagement at Lawson
For the past two years, Lawson has been working collaboratively with London Health Sciences Centre's Patient Experience Office and St. Joseph’s Health Care London's Patient & Family Advisory Councils to engage with Patient Partners who are interested in the research aspect of health care.
The goal is to help Patient Partners become involved in research at the level they choose, whether that is being involved as a reviewer for a research competition or collaboratively working with the research team to support various areas of the research study.
Everyone benefits
Patient Partners bring an important perspective and valuable expertise to the research and can enhance its relevance and feasibility. In turn, taking an active role in how health care is designed and delivered offers patients a sense of fulfillment.
Researchers are the experts when it comes to the design of a strong research project; however, the research is being conducted for the benefit of patients.
“Researchers are very knowledgeable and have the big picture of how a research project will unfold. But they don’t have the perspective of being a study participant or how a study will impact patients in unanticipated ways,” shares Diana Lemaire.
“You will always benefit from having someone with lived experience on the team.”
Patient Partners involved early in the study design can identify ways to boost recruitment, and ensure that participants stay engaged and comply with the study protocol.
Lemaire notes that the Patient Partners themselves bring skills and backgrounds that will only serve to enrich the research process and its overall success.
“The core of patient engagement is that patients are involved in decisions that affect them. There is an important opportunity here for patient partners to play a vital role on research teams.”
