Join us behind the scenes for reflections, best practices and impact stories from author teams, Geographic Groups, and others involving patients and the public in Cochrane activities. This month we meet Dr. Robby Nieuwlaat from Cochrane Canada.
Please share who you are, which Cochrane Geographic Group you’re representing, and the typical activities your group undertakes.
I am the Acting Director of the McMaster Cochrane Canada Centre in the Faculty of Health Sciences, co-Director of the International Guideline Training and Certification Program (INGUIDE), and a member of the McMaster GRADE Centre. The typical activities of our group include multiple aspects of supporting evidence-based health decision-making, including the development of evidence synthesis products, development, implementation and dissemination of health guidelines, the development of knowledge mobilization tools and activities for our methods and outputs, and training people in evidence synthesis and guideline development methods. We apply our expertise in collaboration with experts in any health area and for various audiences.
How do you currently involve patients and the public in your Cochrane-related activities? What impact do you think involving patients and the public has had on your group’s work?
Our most recent project at Cochrane Canada was the Canadian Guidelines for Post COVID-19 Condition (CAN-PCC). We involved patients with lived experience on six guideline teams, the overarching guideline development group, and the knowledge mobilization and equity oversight committees. We also engaged the public, including patients, for prioritizing topics and questions and through monthly surveys to provide feedback on draft recommendations. The knowledge mobilization committee ensured all resources and products were co-created with the target audience. The equity oversight committee ensured project-wide input from the perspective of patients in Canada who may be experiencing important barriers to care. By involving patients with lived expertise and the public, we grounded every stage of the guidelines in their experience, ensuring they were practical, patient-centered and responsive to the needs of those most affected.
How did you find patient and public contributors in your region? How do you maintain relationships with these contributors over time?
For this guideline project, we issued a public call for applications to participate in the project that was promoted through social media and our network of clinicians, organizations and health system contacts. Patients who were selected to participate were asked to review and agree to expectations for their role, and we offered an honorarium for their time investment. A multi-pronged strategy was essential to raise awareness of the CAN-PCC guidelines and knowledge mobilization resources. We used a monthly newsletter, social media posts on our page and through one-on-one requests with collaborating organizations, patient Facebook groups, and paid Facebook ads.
Although the project concluded in March 2025, we continue to engage with patients and the public by sending regular email updates about forthcoming publications and our ongoing pursuit of funding. We also share opportunities that may be of interest, including other research projects, the PXP (For Patients By Patients) conference, and research tasks on Cochrane Engage.
What challenges have you encountered in involving patients and the public, and how have you addressed them?
One of the main challenges in the CAN-PCC project was ensuring diverse representation among patients and public contributors. In a country as vast as Canada, it was difficult to obtain full geographic representation while also reaching individuals from groups that may be experiencing barriers to care. To address this, we used multiple recruitment strategies, including social media, professional and community networks, and targeted outreach to patient groups and professional contacts with access to patients in their geographic areas.
Another challenge was balancing the time and workload demands placed on patient partners, who were facing challenges due to their symptoms of Long Covid which may be worsened following cognitive and physical exertion. To address this challenge and help collaborators to contribute at a level that suited them, we offered flexible opportunities for involvement, including the option to provide feedback via email and organizing hybrid meetings.
A third challenge was ensuring that patient collaborators had the same understanding as other experts of the methods we were using for evidence synthesis and guideline development as well as the health and clinical content. Academic and clinical experts may have had more exposure to such methods and are fluent in discussing their content area from a clinical and scientific perspective. By offering INGUIDE training to all our collaborators including patients, we were able to achieve a similar foundational understanding of our guideline development process, which clarified expectations and facilitated discussion of evidence and recommendations.
Finally, sustaining engagement beyond a single project can be difficult. We have made ongoing communication a priority, sharing regular updates, new opportunities and recognizing the contributions of patient and public partners as integral in our completed work as well as future work.
What is one key learning or piece of advice you would offer others who are starting to involve patients and the public in their Cochrane work?
Start by building relationships early and make space for meaningful input at every stage, from the beginning upon application for funding
Start by building relationships early and make space for meaningful input at every stage, from the beginning upon application for funding. Be clear about roles, the honorarium/payment that will be provided for what activities, provide flexible ways to participate, and provide opportunities for contributors to disseminate and showcase how their involvement shaped the work. This builds trust but also ensures the final products are relevant, practical and responsive to patient and public needs.
What is one burning question you would like to ask the next Geographic Group we interview?
How do you ensure that participating patients and caregivers have an open mind towards the research evidence and are not led by preconceived notions of what the conclusions should be?
If you're interested in joining or supporting Cochrane Canada, you can contact them or sign up for their newsletter.
If you're located in a different region and would like to get involved with your local Cochrane Geographic Group, you can find more information here.
