Gillian Backlin: How I got involved in patient-oriented research and why

Are you wondering why it might be worthwhile for you or your child to take part in a patient-oriented research study? In our “What’s My Why” blog series, hear from five CHILD-BRIGHT patient-partners on the many reasons they decided to get involved in research.

In this post, Gillian Backlin, National Youth Advisory Panel member, shares her “why”.

I’m new to patient-oriented research. In fact, I just got involved through CHILD-BRIGHT’s National Youth Advisory Panel. What drew me to CHILD-BRIGHT was the opportunity to do something positive for a community that I feel so strongly connected to through my own experience as someone with a brain-based disability. Advocating has always been a passion of mine and I felt that this was an incredible chance to not only be heard but to make a positive impact. CHILD-BRIGHT really helped me see the value in my perspective and gain more confidence as an advocate, not only for others, but for myself. I think having access to firsthand experiences is valuable for both the patient and the researcher, because it adds a much-needed personal element to research and empowers the patient to value their thoughts, opinions and experiences. I’m so grateful for the opportunity to be a part of patient-oriented research at CHILD-BRIGHT. 

Fabiana Bacchini: Why I got involved in patient-oriented research

Are you wondering why it might be worthwhile for you or your child to take part in a patient-oriented research study? In our “What’s My Why” blog series, hear from five CHILD-BRIGHT patient-partners on the many reasons they decided to get involved in research.

In this post, Parent Partner Fabiana Bacchini shares her “why”.

When my son was in the neonatal intensive care unit (NICU), we signed up for two research studies. Back then, my only hope was to help him during his NICU stay. After his discharge, I started volunteering in the NICU and I was invited to collaborate in a few research projects, sitting side-by-side with clinicians. My perspective totally changed as I started to understand the importance of research to provide children with evidence-based care and treatments. 

I'm grateful to all the families who participated in research before me. Today, I get involved in research as a collaborator as a way to give back to this community and I continue to enrol my son in research studies to support families who will come after us.

Frank Gavin: Why I got involved in patient-oriented research

Are you wondering why it might be worthwhile for you or your child to take part in a patient-oriented research study? In our “What’s My Why” blog series, hear from five CHILD-BRIGHT patient-partners on the many reasons they decided to get involved in research.

In this post, Frank Gavin, CHILD-BRIGHT’s Director of Citizen Engagement, shares his “why”.

I was keen, my wife less so, to enrol our son in a research study when he was twelve. We were made aware of it by a pamphlet in the office of the doctor who had recently diagnosed him as being on the autism spectrum and who was the study’s principal investigator.

At the time my wife and I had many questions. Why, for instance, were his school test results all over the map? Why was he so deeply anxious about seemingly trivial matters? How could we ease his suffering? We craved answers or at least information that might lead to answers. This study, we knew, only partly related to our main concerns, but it seemed more relevant than others we found out about. Of course, any opportunity for parents like us to help shape a research project that would more directly address our main questions was nowhere on the horizon.

The consent form told us quite clearly not to expect much information specific to our son, but we were promised a three-page report about him and a meeting with the junior investigator who was to be with him as he performed the many tasks.  To us, information-hungry in those post-diagnosis months, this all seemed well worth the considerable trouble of taking our son out of school for three half-days and delivering him to a child-unfriendly concrete building with the narrowest of windows so he could complete quite arduous tasks—all, of course, while being closely observed by strangers. He found it hard-going.

A couple of months later I drove downtown for the scheduled meeting with the graduate student who had conducted the tests and written the report that was to be shared and discussed at the meeting. Unfortunately, when I arrived I was told the student couldn’t make it that day because of a snowfall of a few centimetres—not much of a storm even by Toronto standards—and that the report would be mailed to us. I was too disheartened to ask about rescheduling the meeting. The report that eventually arrived in the mail was moderately useful. I suspect it would have been more helpful if we could have talked about it with its author, even asked her a few questions.

Since that experience many years ago, I’ve been an advisor and a partner on several research projects, including CHILD-BRIGHT. My hope is that by working together we (researchers, parents, and youth) can make sure that the research addresses the most important questions we have and that it does so in a way that always respects and fortifies the children, youth, and families who, as research participants or subjects, make such generous and indispensable contributions.

Donna Thomson: What’s Your Why? This is mine—why my family participates in research

Are you wondering why it might be worthwhile for you or your child to take part in a patient-oriented research study? In our “What’s My Why” blog series, hear from five CHILD-BRIGHT patient-partners on the many reasons they decided to get involved in research.

In this post, Donna Thomson, Citizen Engagement Council member and Patient-Partner with the Strongest Families ND and READYorNot™ research projects, shares her “why”.

As a child, I hated science. I flunked math year after year, and daydreamed my way through grade nine biology. Luckily for me, I went to high school in what I call ‘the hippy years of education’ when students could take whatever classes they wanted. Required courses simply didn’t exist. Bound for theatre school, I dropped anything science-related after grade nine and concentrated exclusively on fine arts and humanities. I remember thinking, “I’ll NEVER need math or science!”

Fast forward to 1988 when our son Nick was born with severe cerebral palsy. His greatest challenge, as an infant, was digesting food.  By 1990, he was vomiting almost everything he ate and drank, so my husband and I opted for a surgical procedure to prevent the backflow of food in his esophagus. Almost immediately a storm of much worse symptoms put us into crisis mode. I felt Nick might die, but test results kept coming back ‘normal’. Doctors were mystified. A discharge summary in 1991 read as follows:

“Nicholas has significant problems with gastrointestinal symptomatology including episodic retching, vomiting, pain and ongoing severe constipation.  We have tried various motility medications and antacid medication with only limited success.”

Having a child with severe disabilities, medical complexity and ‘normal’ tests results had two effects on me: first, I was desperate with worry; second, I transformed into a tireless hunter for information. I wanted badly for someone to understand what was happening to Nicholas and how to fix it. I asked every other parent in our town’s disability community whether their child experienced similar symptoms. None had.

Prior to the internet, intrepid parents would somehow procure copies of medical journals and share them in brown envelopes via Canada Post. Worry made me abandon my sense of propriety and, following the lead of other fearless ‘medical moms’, I picked up the phone and called the authors of those journal articles that seemed to describe my son. Every single one of them was kind, generous and interested. I decided then that research was the path to getting answers that were unanswerable at our children’s hospital.

Over the years since high school, I’ve learned two things about science that made me love it:

1. Science is a lot like art because it begins in the imagination, and

2. By participating in research, we can ease particularly challenging effects of my son’s disabilities while at the same time helping others by generating new knowledge.

For me, participating in research with Nick helps me feel like a good mother.

Nicholas and I have participated in many research studies. We feel like we’re part of something important, something optimistic. We know we are making a positive difference by learning more about Nick’s disability while giving back to other families by getting up close and personal – with science.

Amy Spurway: A Word on the ‘Whys’: Three key reasons to get involved in research

Are you wondering why it might be worthwhile for you or your child to take part in a patient-oriented research study? In our “What’s My Why” blog series, hear from five CHILD-BRIGHT patient-partners on the many reasons they decided to get involved in research.

In this post, Amy Spurway, Citizen Engagement Council member and BRIGHT Coaching Patient-Partner, shares 'her “why”:

Research studies. Those words alone can conjure up images of lab rats, mysterious injections, and scientists gawking at their subjects through one-way mirrors, scratching their chins or scribbling notes as they murmur, “Hmmmmm. Interesting…” So, when we tell people that our family regularly takes part in research studies, the first question — apart from “Did you get radioactive spider bites that give you superpowers?” — is usually “why?” It’s a great question. The exact answers — our “why stories” – are often as individual as the families and studies themselves. But in the big picture of ‘why’, there are three kinds of reasons that can lead us toward research projects, and they boil down to the personal, the professional, and the political.

The Personal

Most research-involved families have a “why story” about a critical moment where they knew they had to do something.  The details of these stories can sometimes be tough to hear — and even tougher to tell — because many families turn to research projects when they feel like they have exhausted all other options. Research is the Hail Mary shot we’re taking in the hopes that someone, somewhere, can help. Maybe we have unanswered questions about a disease or condition, and we enrol in a study in the hopes that those questions can be answered. Maybe research is a possible pathway to a new treatment, or much needed support.  Maybe we are trying to get better information about the disease or condition we’re facing, and research may offer new insights. Or maybe we come to research simply seeking a community that understands us. In short, our ‘why stories’ often begin with unmet personal or family needs, and research gives us a chance to learn, to share, and to connect. For our families, that is a chance well worth taking, even though there are no guarantees.

The Professional

Getting involved in research studies — especially those that see and treat families as true project partners — offers more than just hope for help with the personal situation that brought us there in the first place. As we make connections to a whole new group of medical, clinical, and academic professionals, it is validating to have their scientific eyes on our strengths and our struggles, offering some keen attention and expertise. It is equally validating when those professionals recognize that we have our own brand of expertise: the knowledge and wisdom that comes from lived experience. We are the ones who are up-close-and-personal with the topics they are studying. Researchers have the hypothesis and the theories. We have the real-life stories and the street cred. In order to ask the right questions and find the best answers, science needs us both, working together. Research holds plenty of opportunities for us, as project partners or participants, to learn and develop new skills, and to form relationships with professionals who care about some of the same things we do. There are even opportunities for us to bring our own professional skills or networks to the table. Interested in helping to shape the way research is communicated to the public, or getting a publication credit in an academic journal, or bringing your advocacy work into a new field? Research participation can help you build relationships, hone or use your skills, and open new doors in the professional world.

The Political

Having political reasons for research involvement isn’t about party politics or yelling at governments. It is about seeing — and seizing — an opportunity to work toward meaningful, lasting changes in the services and systems that have a big impact on our lives. Policy makers often look to research to help create and deliver the supports, services, and programs our families need. By getting involved in research, we are also getting in on the ground floor of what might one day be used to develop policy.  Women and girls, people of colour, people with disabilities, LGBTQ people, and people with low income are often poorly represented or totally left out of the kinds of research that inform policy makers in their decisions. But everyone deserves a safe, respectful place in those conversations, and research is a way to create those seats at various tables. Through research involvement, we can help influence the policies, programs, supports, or services that may come about as a result, and we can help ensure that research truly reflects who we are as people, and what we need as a society. This political “big-picture”, and the potential to influence it can be a great reason to get — and stay — involved with research.

So, what’s the bottom line on our ‘whys’? Because we hope to somehow make things better somehow for ourselves, and for other people. And with more and more researchers realizing how valuable it is to have us as partners rather than research subjects, there are more and better opportunities to make a real difference. No lab rats, mysterious injections, murmuring scientists or radioactive spider bites required.