The Importance of Relationship Building
By Rishma Chooniedass
At its core, public and patient engagement (PPE) is meant to develop and support meaningful relationships. The reasons why people engage with the public in health research can look different (check out Carolyn’s post on the value of PPE), but at the end of the day, it’s about building relationships. In reality, researchers, healthcare professionals, and members of the public can often feel disconnected from each other - even while working on a project together. Too often, meaningful relationships may be lacking, inconsistent, or hard to sustain.
So what makes for strong relationships in PPE? Enter Rishma Chooniedass, a clinical research coordinator with a background in nursing who has worked on various longitudinal (long-term) health research projects, including the Canadian Healthy Infant Longitudinal Development (CHILD) study. While many longitudinal studies report retention rates of between 30–70% — CHILD has retention rates of over 90%. Rishma and her team have valuable insights to offer regarding engagement, by focusing on caring about the individuals and their lives (hint: this goes far beyond compensation), setting the stage for meaningful patient engagement for future research. Read Rishma’s post about relationship building below.
From Birthday Cards to Halloween Parties: Building Relationships is Crucial
Health research is fun and rewarding, and I’ve been privileged to be at the forefront of cutting edge research in pediatrics and child health. I often wonder, when others think about research, what comes to mind — Diagnoses? Medication? Treatments? I think ‘people’. Whether the information comes from questionnaires or biological samples (blood, urine, saliva, etc.), researchers collect the data and then try to make sense of the information in order to answer their research question. However, it is important to remember that all of this comes from people.
I have been fortunate to work on several longitudinal research projects, where we assess patients over multiple years. The Canadian Healthy Infant Longitudinal Development (CHILD) study is one example. CHILD is a Canadian study that investigates how the environment affects children’s health. This study includes 3,495 families across Canada (including Vancouver, Edmonton, Toronto, and Manitoba). CHILD began by recruiting women early in pregnancy and continued following the children until their fifth birthday.
Building relationships with members of the public involved in health research is crucial. These are the people who make research successful, and researchers need to know how to nurture these relationships. Even after 5 years, our retention rate for the CHILD study is over 90%. It is the relationships of those staff on the front lines with our patients that are a major reason we retain our participants year after year. We have families travel back to Winnipeg for clinic visits from places far away, such as China, Trinidad, The Netherlands, and New Zealand! Gone are the days of sterile white coats and being afraid of doctors or researchers — nowadays, research labs are colorful, welcoming environments where children get toys, treats and entertained by songs or videos to make the clinic visit genuinely fun.
I remember recruiting families and explaining the 5 year study commitment that involved pages and pages of questionnaires, blood samples, urine and stool samples, home visits, and several clinical visits. But I also remember their personal stories. Some families were anxious because they were having their first child, while others were having their eighth child. Each person had a story and as they made time for our study, we made time to hear their story. It is this type of therapeutic relationship that stands the test of time.
I was privileged to be present at the births of some of these children, and was able to watch them grow over the years. We sent birthday cards and newsletters to the families, and got stories and photos from them in return. Whether it was their first tooth or their first day at preschool, we kept in touch with the families and shared in their journey. We held fun events like Halloween parties where the kids were encouraged to dress up and come play games with the staff. Building these relationships made the clinic visits much easier for the families, and for us.
Our job is to integrate their suggestions into future research. Now that this phase of the study is nearing completion, we invited families to tell the researchers what they want to see in the next phase of research. We asked “what is important to you? What did you like about the study?”
I tell my study participants that they are an integral part of important research and they are the heroes of tomorrow. I am very grateful to be a part of research and for the many beautiful relationships I have made. This is an exciting time in health research and I look forward to the many possibilities of engaging patients and the public in the process.
References
- Gustavson K, et al. Attrition and generalizability in longitudinal studies: findings from a 15-year population-based study and a Monte Carlo simulation study. BMC Public Health, 2012;12:918.
About the Author
Rishma Chooniedass is an Assistant Professor at the University of Manitoba, a Certified Asthma Educator, and the Research Nurse Coordinator for the Manitoba site of the Canadian Healthy Infant Longitudinal Development study. She completed her Master of Nursing in 2016 with a focus on food allergies. She has worked in the Department of Pediatrics and Child Health for over a decade, primarily in research, but also with the Children’s Allergy and Asthma Education Centre to create innovative ways to translate information to the public. She is also a member of the Developmental Origins of Chronic Diseases in Children (DEVOTION) Network.
