A recently published paper with ties to Memorial University has a unique twist.
Instead of focusing solely on findings, it describes the experience of patient advisors involved in a research project.
The paper, titled Including the Patient Voice in Patient-Centred Outcomes Research in Integrative Oncology, was released in early November.
Dr. Sheila Garland, an assistant professor of psychology, Faculty of Science, at Memorial, began working on the project during her post-doctoral fellowship at the University of Pennsylvania in 2014.
The CHoosing Options for Insomnia in Cancer Effectively, or CHOICE, study is a comparative effectiveness trial comparing acupuncture with cognitive behavioural therapy for insomnia in cancer survivors.
Patient-centred
The study included a patient advisory board consisting of eight individuals who had been diagnosed with cancer.
The principal investigator and research team spent six years building relationships with the board members and other stakeholders in preparation for the study.
“What was notable about this paper is that it was actually written by patients for an academic journal.”
Board members worked to ensure the project was patient-centred and helped develop the research questions and approach.
“What was notable about this paper is that it was actually written by patients for an academic journal,” said Dr. Garland.
“They were able to contribute to the science in a meaningful way and have their work side-by-side with other published work by academics. It’s certainly an interesting development in the field of clinical research.”
She believes hearing from someone with the same experience who is also directly involved in a research study adds a certain level of credibility and trust for patients considering taking part.
Knowledge translation
“But, with patient co-investigators, it’s not just their experience with the disease or disorder that’s important,” said Dr. Garland. “Sometimes, they bring additional expertise and skills to the research team that other members don’t have.”
In addition to having a breast cancer diagnosis, the lead author of the paper, Jodi MacLeod, has a background in education. She made sure the research materials were easily understandable. Another patient co-investigator, who has a background in social work, helped engage minority populations in the research.
As the study moves into the dissemination phase, the researchers intend to expand their web presence and develop patient decision-making materials in order to effectively translate study findings to patient, stakeholder and research audiences.
Meaningful engagement
“[Patients] don’t think about the things scientists think about,” she said. “They think ‘How can I use this information?’ and, ‘How can we make sure other patients are able to use it?’
“This can make sure the results we’re getting are translated more effectively and quicker to decrease the 17-year lag between when a finding is published to when it is finally taken up by the decision-makers, front line staff, patients, stakeholders and policy-makers — that’s a long time.”
Even with all the benefits, Dr. Garland says academics sometimes find it hard to engage patients in the research process.
But, this project has had a long-term influence on her own work as a principal investigator on other projects.
She says that understanding exactly what patient-oriented research means and being able to meaningfully engage participants or patients in the research process and making sure they are equal contributors on the research team, changes the dynamics of how research is conducted.
“It’s less hierarchical and more of a collaborative approach,” she said.
“It’s not done as often as it should be done, and it’s absolutely done better with them. I think others are starting to come to this realization, but I was very fortunate to have this experience early on in my career. I’ve been able to use it in all my research.”
