Grant Reviewing: The Experience of a Parent

Editor's Notes

1. Thanks for the kind introduction. I am Isabel Jordan, and my perspective today is the parent reviewer on the Rare Disease Foundation Microgrant reviews I thought long and hard about what I could bring to this Research Forum today.
2. I am not clinician or a health care provider.
3. I am not a PhD
4. I am not a researcher. So what can I bring to the research review process? How can parents & lay reviewers contribute.
5. I am a parent to these 2 amazing children. – Zach is 13 years old and Evie is 10. Zack has an undiagnosed rare disease. And Evie is his typical little sister who spends much time worrying about her big brother.
6. I am a builder and believer in networks both online and offline. As myself and as a member of the rare disease foundation.
7. Online and offline I believe in the collective wisdom of families, patients, caregivers, doctors and allied health professionals. Furthermore, I deeply believe that it is in the intersections of those relationships and communications that the wisdom lies that will bring patient care forward, individually and collectively. And I am deeply, deeply entrenched in the day to day life of living within a family and community impacted by rare disease. Not just because of my volunteer work with the rare disease foundation, but because of my where my family situation has brought me…
8. Because my perspective comes not from a professional affiliation or education, but from our family lived experience… For those of you on the other side of the desk, on the other side of the exam table, please let me tell you pull back the curtain of my experience. My son is 13. After seven or so specialists, many tests, much chronic pain, on again off again, on again disability, a rare tumour, an impressive surgery, and ICU stay, 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. Some days are bad. This year, he’s missed 70% of his classes because of pain, nausea & fatigue. This for a kid who’s already decided he’s going to have a PhD in Marine Biology and study the deep ocean. Personally, we often feel completely powerless and buffeted by forces we can’t understand and have no control over. But this is our reality and the reality shared by most in the rare disease community. But what does this have to do with reviewing research grants?
9. What colour is this dress? No matter how many times I saw this come across my facebook or twitter feed last week I could not see this dress as the blue and black pictured on the right. In fact, even though I recognize that, logically, I know people aren’t lying (because I trust them) when they tell me they see the dress that way, I can’t actually personally conceive of it that way. What is amazing to me is how this, apparently frivolous internet meme went viral, pointing out how not only we can see things differently, but that we may not even REALIZE that others are seeing the same thing in a completely different way. It was such a beautifully concrete way to show this. I used it as a great example for my kids, but I think all of us can use this object lesson. None of us are seeing it ‘wrong’. None of us have the negative or positive perspective. We are all valid. We just need everyone’s perspective to see a full representation of reality. I see rare disease research the same way. It is #thedress. (I hashtagged that in my mind, by the way). Traditional ways of reviewing grant proposals have only had one perspective, that of scientific reviewers. That perspective is not wrong. It is completely valid, for what it represents,but it is not the full picture. In order to see the full picture we need to bring in a diversity of voices to fund the research that affects the community it most effects. Here’s an aside, most people see the dress as white and gold, however, in reality the dress is blue and black.
10. Bringing in the patient and family community has real benefit to the research funding process and I’ve seen this through participating myself for the past several years. Sometimes specific projects are funded that the scientific community just doesn’t realize are a priority to the rare disease community and turn out to have a large impact on care. And speaking of that – one of the real benefits, IMO for the RDF Microgrant program is maintaining the focus on the care-focused nature of our program – that is our priority and that is something the lay reviewers tend to keep a laser focus on. Less concretely, but just as important it forges and maintains a connections b/w the pt and family community and the research community that can keep them engaged in studies and even engage them in fundraising that can fuel further research. Not just about the research. Reviewing can be an intense process. It’s not often but when it happens it can be time consuming. Why would the lay reviewer participate?
11. Taking a look at the life of a person/family with RD.. Juggling – medications, hospitalization, schedulint OT, PT, SLP and other appointments, food restrictions, specialized diets, special school plans IEPs, scheduling OT, PT, SLP and that’s just for the affected family member. We also have our jobs, and the rest of our household to manage.
12. Life like this can leave me feeling overwhelmed, worried, confused and frankly, just plain old tired. Why on earth would I take on anything else that’s optional? I can only speak for myself, well, myself and some of the other reviewers I spoke to! There is one main reason..
13. As I indicated, the rare disease life is one of frustration with few answers. Many of us don’t hold out a lot of hope that we’ll get definitive answers. Wait, that sounds too… harsh. We do have hope, but we don’t have.. expectation. For me this process has been somewhat liberating. Twice a year, for the past 6 years I have been astounded by what researchers and doctors and students and nurses and genetic counsellors have come up with for ideas on how to concretely help the rare disease community. In the vast majority of cases, most of these grant proposals will have zero impact on my life or my family’s life. But they do have the potential to impact a family JUST LIKE MINE. Another parent who lurches from appointment to appointment wondering what will come next, and maybe, one of these little studies will make their journey just that little bit easier. Participating in this process, effects a change in my community that I can be a part of. Listen to that. Feel that. I, as a parent, can be a part of creating the greater good for research into the rare disease community. I can help set the direction to create care-focussed research. I can represent the priorities that are important to us, the parents, the patients. I am doing that. I can’t find a diagnosis for my son, or treatment, or even if he can make it to school tomorrow. But I can do that
14. There’s something else going on here as well. Our vision at the Rare Disease Foundation, from the beginning has been that the patient and family voice is on an equal and collaborative level with that of the clinician and the researcher – that together these different kinds of knowledge are what will drive research forward. Where this is true on patient level, it is also true on a more macro, research level as well.
15. I was so intimidated at the beginning that I didn’t have the specialized medical/scientific knowledge to rank the reviews. This is a feeling shared by my other parent reviewers. Those I spoke to ALL echoed this sentiment. But here’s what I understand now. That is ok. We are bringing something else to the table. We see the dress as blue and black. The scientific researchers can only see it as white and gold and we are there to make sure that blue and black perspective is shared. In fact, if we weren’t there, they wouldn’t even know that anyone saw the dress as blue and black. And the quality, depth and breadth of research that was funded would be poorer for it.
16.   Moving forward, how to we supercharge our parent reviewers? How do we make this work even better? I think we need more. I think that having more perspectives helps us make better decisions. I am not the rare disease community I am Isabel Jordan, @seastarbatita and I am both bound and lifted by my experiences. Having more critical thinkers who understand our model and our goals will make the process more robust. But, it is time consuming when we go through it, and as a rare disease community, there are time demands and pressures that are not ours to control. I had a steep learning curve to getting to trust my instincts, to figuring out that I wasn’t meant to be a scientific reviewer. Of course, the total nerd in me wants to understand all the science and our lay reviewers need to have enough understanding to be able to read through the summaries, but I needed to know where it was ok for my understanding to stop. I still somewhat struggle with that.
17. I believe in this concept – that together we make better decisions. Together we have a complete picture of what constitutes better care for the rare disease community. My perspective isn’t the only one parent perspective, I’m only a small piece of the picture but I do feel confident that more informed voices will mean a better decision.