When patients lead, research is relevant
Next-level patient empowerment: that’s how Dr. Andrea Tricco describes an initiative that encourages Canadians to submit questions that will guide scientific research.
Dr. Tricco, the director of the Knowledge Synthesis Team in the Knowledge Translation Program at Unity Health Toronto, leads a federal initiative called the Strategy for Patient-Oriented Research (SPOR) Evidence Alliance. The team recently received a $2.6-million top-up from the Canadian Institutes for Health Research (CIHR) for this work, which promotes evidence-informed health policy and practice changes.
Now, they’re reaching out across Canada to gather ideas for research that will generate health practice and policy impact. The 20 people whose projects are selected will become embedded in their research and lead from their lived experience, alongside researcher co-leads. We asked Dr. Tricco more about this initiative, the unique model it offers for patient-oriented research, and its impact.
What is the importance of patient-oriented and patient-engaged research?
Dr. Andrea Tricco: Patient and public partners have lived experience, and they are the ones who are interacting with our health system every day. They have a lot of knowledge about the barriers and challenges of our health system, sometimes even more than providers and other decision makers working in the system. They play an all-important role in our research. They provide us with the health-care consumer perspective, provide opportunities to work with the community, help shape our research questions, make sure our research is relevant and impactful, and they ensure our findings are useful for important health system decisions. Patient and public partners make our research better.
We have a recent example where there was a question from a public health body. When we discussed it with the patient and public partners, they felt that the question wasn’t quite right. They suggested a completely different approach. This is a good example of where the policy decision maker didn’t have the lived experience expertise required to understand the underlying issues. This also shows us why it’s so important to get feedback from patients and the public early on in the research process.
What is the main focus of the SPOR Evidence Alliance?
Dr. Tricco: Different health decision makers, such as policy decision makers, health-care providers, as well as patient and public partners submit research questions that will help inform a decision they’re trying to make. The SPOR Evidence Alliance works alongside these decision-makers to co-create research projects that will answer their research questions. We are mandated by CIHR to answer their questions using knowledge synthesis, knowledge translation or clinical practice guideline methods.
Over the last six years we’ve completed more than 125 projects and we’ve worked with 45 different decision-making organizations across Canada and abroad. That includes the mechanism where patients can submit topics and we conduct patient co-led queries for the topics that patient and public partners suggest. More information on our initiative can be found in our recent series of papers published in the Facets Journal.
The SPOR Evidence Alliance has investigators across the country, led out of the Knowledge Translation Program at Unity Health. Why is Unity Health well positioned to be the centre of this work?
Dr. Tricco: We have a long history working with patient and public partners and also with policy decision makers, health-care providers, and other decision makers in the health system. It takes years to build these relationships. Having them in place prior to beginning this initiative was a facilitator to our success. We also have experience leading Canadian initiatives so we have been able to take learnings from other initiatives and apply them to this.
In the first round of this funding, your team ran three patient and public partner co-led pilot projects. How were the three projects that were prompted by patient questions selected?
Dr. Tricco: Over one year, patients submitted 11 topics. These topics were prioritized by a panel of 25 individuals with diverse experience as policy-makers, health-care providers, trainees, researchers, and patient and public partners.
From the 11, we selected three topics that were deemed in scope of our initiative, unique in order to reduce research waste, and highly impactful. The projects were then co-led by research teams alongside the person with lived experience who submitted the topic. We are now scaling this up. Since July, we have received almost 50 topics that will be prioritized and result in 20 additional projects.
Why is this approach unique?
Dr. Tricco: Patient and public partners are truly involved at every level. They are involved in the governance of our initiative through various committees, and then we have patients and the public engaged in every project. At the highest level of empowerment, patient and public partners are submitting the topics and they co-lead projects from start to finish.
What has the impact of patient-created and co-led projects been so far and what do you hope the impact will be for the next set of projects?
Dr. Tricco: We’re getting to very relevant questions to inform health systems change.
Patient partners co-lead with their lived experience. They provide unique content expertise as those frequently using and navigating our health system that a researcher doesn’t necessarily have. The impact of this is to reduce research waste, answer the most impactful and important questions, and develop evidence that can be used for everyone in the health system.
The SPOR Evidence Alliance is currently collecting research questions from the public and patient partners. To submit a question, please visit this page on the SPOR Evidence Alliance website.
Read more: Three SPOR Evidence Alliance projects inspired by a query from the public:
- Trauma-informed care practices to support caregivers of children with severe illness: The team aims to evaluate existing research to understand whether and how trauma-informed care services can prevent or alleviate traumatic stress in family caregivers. This review is co-led by a patient caregiver and includes family caregivers, pediatric clinicians, and researchers.
- The effectiveness of alternatives to institutional care for older people with on-going complex care needs: The team, co-led by a patient partner and a scientist, will analyze existing research on how effective alternatives to institutional care for older people with ongoing health and social care needs are based on outcomes such as physician visits and admissions to hospital. Results will support leaders and policymakers to identify and evaluate programs that can support older people to live in the places most appropriate for them.
- Supporting patient and public partners in writing of lay summaries of scientific evidence in healthcare: Despite growing interest among patient and public partners to engage in writing lay summaries, evidence is scarce regarding the availability of resources to support them. This review will summarize the existing evidence on best practices for writing lay summaries, including practices specific to patient and public partners. The review, co-led by a patient partner and a knowledge translation scientist, will conduct a consultation exercise with patient and public partners to contextualize the information to their needs and preferences.
By: Ana Gajic