Patient Engagement in Research
What is Patient Engagement?
Patient Engagement is meaningful and active collaboration of families with lived experience (parents or caregivers, siblings, children and/or youth) as partners in research. There are many different levels of patient engagement and you do not have to engage in every level for every project, but the key here is meaningful and active participation. That means when patients are consulted, they have the potential to change the project. This does not mean that everything they say must be implemented, but just as you would with another colleague, if you cannot act on a suggestion, you would explain why.
The long-standing question: partner versus participant?
Let us begin with participants. Participants consent to be in the study and have data collected from them or about them. This may be interview data, survey data, biological data, social data, or any other kind of data. A researcher’s relationship with study participants is governed by the Research Ethics Boards permissions and consent document they have signed. Moreover, I know not all researchers have participants in that sense of the word either… they may have mice or cells or data sets.
Patient partners are people with lived experiences who join you as part of the research team. They do not sign consent forms; the researcher-patient partner relationship is not governed by the Research Ethics Boards, and in most cases, they are not participants in the study. Just as a research team might include a clinical partner, you can also have patient partners. Regardless of whether a study has human participants or not, researchers should consider including patient partners.
Why do Patient Engagement?
There are many reasons to engage members of your patient population as partners, especially in child health research. If you are asking questions in your study to 8-year-olds, who better then an 8-year-old to tell you if they understand the questions?! A great reason to engage patients is to ensure that the language and content of the information provided to participants is appropriate and accessible. It can also help make sure the proposed study methods are appropriate, acceptable, and sensitive to the very real context in which patients and informal caregivers live, work, and play. If your study needs a five-year-old to sit in front of Zoom for an hour, any parent will tell you that this may not be the best approach or realistic. This may seem obvious, but there are many assumptions we make as researchers (and adults) that may not be as easy to identify.
At every stage of research, patient partners can help make the research both more meaningful and relevant. For example, they can:
Help shape and clarify the research questions so the questions reflect the needs and concerns of patients and caregivers.
Support recruitment by making promotional materials more relevant and by identifying places to advertise your study.
Help interpret research findings from the perspective of people with lived experience.
Inform recommendations that will help improve the lives of patients and families.
Help create knowledge translation materials and share the results of the study with the participants, the patient population, and the larger community.
Patient Engagement in action
The insight we get from engaging patients ranges may change something simple like an interaction between a clinician and a patient or it may change an entire research methodology. As an example, the iCARE project started as a biological study for children diagnosed with type 2 diabetes. The youth and parents on the patient advisory group continually discussed how mental health and distress affected how they were able to manage their disease. The study changed to a bio-psycho-social approach and proved that these patients were correct, negative mental health and higher distress does negatively effect biological outcomes like blood sugar levels. Now, five years later, the project is testing if a particular type of mental health support will help these young people manage their diabetes better.
Another example comes from a quality improvement project. Children and youth were invited to give feedback on a script for a video that was being made to explain what happens when a cast is removed. One youth partner remarked that the clinician explained the cast removal tool really well, but what scared them was the scissors because they were so cold against their skin under the cast and nothing had touched that skin in many weeks. By letting the quality improvement team know this, the video script was changed to include a simple warning that the scissors might feel cold. Now other children and youth will have a better idea of what to expect when their cast is removed and hopefully be less scared.
Closing remarks
I know there is a lot of information out there about the importance of patient engagement. Sometimes patient engagement can feel complicated, time consuming, and expensive. Sometimes it can be difficult to find the right information for very specific questions about patient engagement. However, please remember one thing - patient partners are research colleagues who happen to have lived experience. We are not different; we are not complicated! We are just people who sometimes have complicated lives because of a particular disease or circumstance that affects us, or someone we know.
If you are a CHRIM member and need help with any aspect of patient engagement, please visit the Research Support Unit Page on the website or click here.
About the Author
Carrie is the Patient Engagement Coordinator at the Children’s Hospital Research Institute of Manitoba (CHRIM) and works to include parents, caregivers, and patients as part of the research team. Carrie also works as a member of the ENRRICH family advisory committee and is a parent mentor and liaison with the CHILD-BRIGHT research network where she supports parents and researchers involved in 12 pan-Canadian multi-year research projects. She has also been a partner, collaborator or co-investigator on over 10 different research projects.
Carrie is a parent of three wonderful daughters aged 14, 11, and 6 years old. Her middle daughter, Alej, has a profound Intellectual Disability and a Seizure Disorder. Her family has spent a lot of time navigating the child health and disability world; she brings that experience to her work with parents and families in research.