I recently had the privilege to attend the CanadianOrganization of Rare Disorder’s (CORD) 2015 Rare Disease Day Conference and to take part in a panel on Patient Leadership in Research.
I thought hard about what I could bring to this research forum. Unlike the other panel members I don’t have a background in healthcare as either a provider or as a researcher. I don’t have peer-reviewed papers to legitimize my experience. I don’t have letters either in front of or behind my name.
So what do I bring to the research review process? How can parents & lay reviewers contribute the grant review process?
Instead of focussing on what I don’t have, let me start by telling you who I am.
I am a parent to two amazing children. By a quirk of genetic fate, my oldest has an undiagnosed, likely genetic, disease. My youngest is ‘typical’ (whatever that may mean), and spends an inordinate amount of time worrying about her older brother.
My son is 13 now, and we have spent most of his life searching for answers. We’ve seen innumerable specialists, experienced so many tests, he’s had so much chronic pain, on again off again, on again disability, a rare tumour, an impressive surgery, an ICU stay, and we still have no answers. Personally, our medical journey is still one of gathering data. Communicating with our healthcare providers and cobbling together management strategies that can maximize our son’s quality of life is our modus operandi. Some days are bad. This year, he’s missed 70% of his classes because of pain, nausea & fatigue. He has ambitions – plans to be a marine biologist and study the deep ocean. I live in fear that whatever he has, we won’t be able to help him realize those dreams. We often feel completely powerless and buffeted by forces we can’t understand and have no control over. This is not just our reality, but also the reality shared by most in the rare disease community.
I am deeply entrenched in my rare disease community. I am a believer in and builder of networks, on and offline. I believe in the collective wisdom of families, patients, caregivers, doctors and allied health professionals. Furthermore, I fundamentally believe that within the intersections of those relationships and communications lays the wisdom that will bring patient care forward, individually and collectively.
My perspective comes not from a professional affiliation or education, but from our family’s, our community’s lived experience. This my education, my on the job learning.
But what does this bring to reviewing research grants?
I have been a parent/lay reviewer for the Rare DiseaseFoundation Microgrant Program since it’s inception. And while I’m a great believer in the program, it actually took me a while to fully understand the value that I, and others from the rare disease community, brought to the table.
It’s that word: perspective. And does the usual mode of reviewing grant proposals really have enough to get the full picture?
No matter how many times I saw this come across my facebook or twitter feed a couple of weeks ago I could not see this dress as the blue and black pictured on the right. I recognize that others genuinely saw it as black and blue. But to me, it remained white a gold. More interestingly, I would never had know that the dress could even be perceived as black & blue if no-one told me. I had no conception that the other perspective even existed. There’s nothing wrong with my perspective (or theirs), but without our conversations, we would have been completely unaware of the other’s.
I see rare disease research the same way. It is #thedress. Traditional ways of reviewing grant proposals have only had one perspective, that of scientific community. That perspective is not wrong. It is completely valid, but it is not the full picture. We are all both bound and lifted by our experiences but having more critical thinkers who understand our model and our goals will make the process more robust . Having more perspectives helps us make better decisions.
Adding the lived experience of families with rare disease to our reviewers ensures that research is funded that reflects the priorities of the rare disease community. Interestingly, I think that this will engage the community in being more involved with both the research process and with fundraising and advocating for research dollars. One group shouldn’t be dictating to the other what should happen, but rather all voices need to have equal standing.
This is a volunteer job that doesn’t necessarily come easily. It is work. It takes effort. It has been at times both time consuming and intimidating. It could have been seen as a burden on individuals who already have so much on their overfull plates? Why would we take on more?
Hope is hard to come by in the rare disease world. Cures are hard. Funding is hard. Days are hard. When you get right down to it, I can only answer for myself. Twice a year, when I read these research proposals, when I see what people plan on doing with these small amounts of money for my rare disease community, I get a spark of Hope. Now I know that the vast majority of these projects won’t do anything for my family. But they will for another family. A family just like mine that lives deep down the shaft of uncertainty, and for them, one of these small research projects may be the beginning of a light at the end of the tunnel. And something that I do might help them see that light. Something I do. That is enough.
We are building something together here – a collaboration of scientists and health care providers and families, all of whom have an equal voice. As much as funding research, this is what I believe in – building this house we can all live in. Because making decisions together – this is what’s going to drive us toward the cures we need.