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Engaging Youth in Research: Examples and Opportunities for Improving…
Author: Mari Somerville
Patient-oriented research is defined by the SPOR Evidence Alliance as ‘meaningful and active collaboration in decision-making, setting priorities, conducting research, and sharing (disseminating) research findings to ensure that the perspectives of patients and members of the public are considered in research priorities and in shaping the evidence and care they receive’. By engaging patient and/or public partners in research, we may design more effective, relevant and meaningful products and services. Particularly when working on research related to specific medical conditions, patient partners provide valuable insight about their experiences and needs living with the condition. As a clinician, I have worked closely with patients to provide care, but as a researcher, I now aim to include patient and/or public partners as often as I can in my research studies.
There are many ways to engage patients in research, however, best practices suggest patients be involved through the entire process, from question formation to knowledge dissemination. The Canadian SPOR Evidence Alliance identifies different levels of engagement as part of a spectrum, including: i) Inform; ii) Consult; iii) Involve; iv) Collaborate; and v) Empower. The most meaningful engagement includes ‘collaborate’ and ‘empower’, where patients play the most active role in the research process.
My experience engaging patients in research began while completing my doctoral training in Australia. I held a part-time position as research coordinator for a project where we co-designed a culturally appropriate healthy weight service for Indigenous families and their children. To ensure this work was culturally appropriate and meaningful for the Indigenous community, we worked hard to engage local community members in the research process. This included creating a steering committee with researchers, clinicians, an Elder, and a mom and child dyad who identified as Indigenous. This steering committee helped identify the top concern(s) around weight management services and to help co-design a solution. By using a co-design methodology, we also spoke with local Indigenous mums and bubs groups to get their thoughts on what a healthy weight service should look like, and we spoke with Aboriginal Health Workers to understand the needs from a clinical perspective. A member of our research team who identified as Indigenous helped facilitate these community-based focus groups, collected data, and analyzed results. Through this process and by engaging patient/public partners in the research process, we were able to design a culturally appropriate healthy weight service for Indigenous families, that was led by and for the end-users.
More recently, I supported another co-design research study called EDUCATE (emergency department discharge communication strategies), which was led by Dr. Janet Curran and the Strengthening Transitions in Care lab at IWK Health in Nova Scotia. This project involved patient/public partners in two ways. Firstly, a patient (parent) partner was a co-investigator on the research project. This parent partner had lived experience of attending the emergency department with their child and helped write and apply for grant funding to run the research study. This parent partner was then involved in all team meetings and helped collect and analyze data, write manuscripts, and help disseminate findings. We also engaged parents, youth and clinicians throughout the research process, following the co-design methodology. This included two groups of about 10 individuals who had either been a patient or caregiver of a patient who had visited a pediatric emergency department, or was a pediatric emergency physician or nurse. Each group was focused on a medical condition (asthma or head injury), relevant to their lived experience. By engaging patients in both ways, we collected important information about the needs and preferences of the patient population for which our health care tools were being designed.
While patient-oriented research is important, it can be challenging to find patient partners who meet your specific criteria or have lived experiences relevant to your research study. Luckily, there are many organizations that can help you identify patient/public partners such as the National SPOR Evidence Alliance, or local SPOR institutes, such as MSSU (Maritime-specific). These organizations will ensure that patient/public partners are fairly compensated for their time as part of research studies, and they also offer training for individuals who would like to learn more about effective patient-oriented research. Through my own experiences working with patient/public partners, I believe that patient engagement in research can be extremely beneficial and should be a priority for any researcher working in health care.
