Answer: Participatory research is an approach used in many fields. It involves the people most affected by an issue in defining the problem and acting with a focus on social change. Patient-oriented research (POR) is a specific form of participatory research that engages patients, caregivers, clinicians, and administrators as partners to ensure that outcomes are relevant and impactful and improve health outcomes. POR is focused on the health sector and the patient experience, while participatory research applies to any context.

Answer: We list recommended POR training activities for child health researchers under Additional Resources, including video recordings, toolkits and webpages, podcast episodes, books, publications and reports. For more advanced offerings, check out the resources under Training Courses & Programs.

Answer: Conflict in POR is natural and can be leveraged to help a team learn and grow. It can be managed by using tools that support defining roles, shared goals, and communication styles. Using agreed upon decision making processes can help prevent misunderstandings. Reflection through open dialogue and focusing on a shared purpose rather than personal differences can alleviate tension. We recommend using these simulation trainings to enhance and enable authentic and meaningful research partnerships.

Answer: At the beginning of the partnership, offer a simple orientation session on the project & POR using plain language. At this time, you can also discuss roles and expectations, establish a safe learning environment, offer a short training around key research concepts and methodology, and a glossary of terms. Next, co-develop project documents & schedule regular meetings with flexible participation methods and/or provide written monthly project updates asking for feedback when needed. Refer to the resources outlined in Engaging PWLEs for more tips and suggestions.

Answer: Ideal approaches will vary from one research ethics board to the next! Some suggestions are to provide more specific guidance on co-designed studies & feasibility; offering resources for more innovative research (educational, coaching, or cognitive training tools for youth); and packaging an easy-to-access resource for teams that have guidelines and templates together.

Answer: Financial compensation should always be discussed with PWLEs before engagement in the project, as well as their tasks and expectations within the role they will have on the team. It is highly recommended that project teams follow existing compensation guidelines from a host institute or funding partners, as applicable. Most guidelines have specific recommendations, and amounts for compensating people’s experiences, tasks & the roles they have. However, for the cases where one’s expertise may be considered for compensation (such as for a journalist who is also a PWLE), it is best to refer to your funding agency's policies and procedures for payment.

Refer to the POR Overview resource list and check out the latest policies and procedures report from SPOR Evidence Alliance: Patient and Public Partner Financial Compensation Policy and Protocol for guidance related to compensation.

Answer: When listing research partnerships, emphasize your active and meaningful contributions. Highlight specific roles such as co-developing research questions, participating on advisory boards, reviewing funding applications, and co-producing knowledge translation materials. Use terminology that reflects authentic collaboration, drawing from patient-oriented research frameworks and networks such as CIHR. Additionally, include any relevant training programs you've completed or notable contributions to collaborative projects. This approach showcases your commitment to inclusive, impactful research.

For researchers: This information can also be listed in your Terms of Reference (see: POR Overview Resources) so that PWLEs have this information handy from the beginning of your partnership.

Answer: Patient-oriented research (POR) enhances the quality, relevance, and impact of health research by engaging partners with lived and living experience, ensuring that research aligns with their priorities. Although this collaborative approach requires a strategic allocation of resources for PWLE compensation and engagement, the investment is justified by substantial improvements in methodological rigor and efficiency. POR has also been shown to improve participant recruitment and retention, resulting in studies that are more feasible, ethically robust, and less prone to costly delays. By integrating PWLEs throughout the research process, POR accelerates the translation of findings into practice and policy, thereby maximizing real-world impact and return on investment. For more information on evidence on the benefits of POR, please consult the resources in the Engaging PWLEs section on monitoring & evaluation.

Answer: Direct involvement of PWLEs in basic (preclinical) biomedical research is an emerging practice. However, studies of patient-oriented research in preclinical and translational contexts, as well as structured priority-setting partnerships, indicate that engaging PWLEs helps align research agendas with partner priorities and the most burdensome aspects of disease, thereby improving relevance and potential downstream impact. Moreover, PWLEs play a critical role in co-creating knowledge translation outputs, such as plain-language summaries, which effectively communicate complex findings to the public and funders.