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Volunteer Advocate

Spotlight on Research

Funding Research to Impact Those Living with Cystic Fibrosis

Q & A with Scientific Review Panel Stakeholder Members: James Cummine and Rob Lake

When making decisions on research funding, Cystic Fibrosis Canada  relies on scientists and clinicians on the Scientific Review Panel to expertly review each grant application. In addition to critical review of the science, the Panel looks to its stakeholder members for their unique and significant perspectives, based on their experiences, on the relevance of the proposed research projects to those living with cystic fibrosis. James Cummine and Rob Lake have been engaged stakeholder members of the review panel for the past three years and two years, respectively, and we thank them for volunteering their time and invaluable insight throughout their tenure in the roles.

How did you first become involved with CF Canada and later with the grant competition?

James: It began shortly after my daughter was born. She was diagnosed with cystic fibrosis just days after her birth. About four months later, we found ourselves attending the Chapter Open House in search of information, and I have been involved in CF Canada’s work for over 20 years now. Initially, I got involved with fundraising events at the Chapter level, then became a Chapter President, and then Regional Director for Manitoba. That got me involved at the National level. However after more than 15 years on the fundraising side, I needed a change and the lay stakeholder position on the research grants review committee was available. I welcomed   the chance to learn more about the disease while helping to make a difference.

Rob: I moved to Canada in November 2011, and was almost immediately put in touch with the various outreach arms of CF Canada in Southwestern  Ontario, where I was living. I was nominated by my local Chapter to serve on CF Canada’s Adult CF Advisory Committee (ACFAC), a role I have held since 2013. Based on my background, experience on the ACFAC, as well as my experience as a kinesiology professor, my name was put forward for the position of stakeholder member on the panel. That was two years ago now, so I just finished my second year as a member on the panel.

Describe the process of reviewing a grant from a stakeholder’s perspective.

Rob: Grant reviewing in basic terms involves reading the lay summary provided by the author within the proposal, and judging whether, and to what extent, the research proposals and potential outcomes are relevant and impactful to CF patients. If the lay summary is well written, this process does not take too long but if there is a great deal of jargon, a good deal of research goes into the process. It is important to ensure that I understand as best I can what the research aims to do, what problems it aims to tackle, or what questions it aims to answer.

James: Initially, it is a learning process, understanding the grant application and the research world. The rest was easier. Once I understood the basic premise of the grant application, which was possible because of the lay summary, it was pretty straight forward determining which ones would lead to a cure and which ones a control, which ones were about basic information and which ones were focused on the symptoms of the disease. Then it is about trying to assess how this will impact the CF population.

How do stakeholders contribute to the scientific review process?

James: At first, I was very concerned about that myself. What did I really have to contribute? However, after living with my daughter and seeing her daily battle, I quickly realized that there were certain aspects of her quality of life that I have unique insight into, and that insight  guides me to comment on how each research project would impact the lives of those living with CF. That was the perspective that the rest of the panel members were looking for from us. It wasn’t about the research itself but how it would help those living every day with this horrible disease.

Rob: After the scientific advisors read their summaries of the proposal and rate them with scores (out of 10) based on how good the research is or proposes to be, stakeholders provide a score and give verbal input into the discussion. In some cases, our input is decisive, particularly where the scientists rank the proposal very high because of how good the 'science' is, but we score it lower because it aims to tackle a marginal issue for CF patients, or the results may only be relevant to a small proportion of those who have CF. In these cases, our input can mean some proposals that are good scientifically, but less relevant to patients, come out with lower scores and therefore have less chance of getting funded, but also that really relevant research projects, which might have a couple of flaws but potentially could be a 'game changer' for how CF is treated or understood, may have a better chance of getting funded.

What factors do you consider when assigning a relevance score to a grant proposal?

James: First, will it lead to a cure or control? Second, is it basic understanding or quality of life research? And third, will it impact a large portion of the population or only a small percentage with certain mutations?

Rob: There are three main things, ranked in order of importance: 1) To what extent will this research project work towards finding a cure? 2) To what extent will this research project work towards better control for the disease? 3) To what extent will this research project work towards improving the quality of life for CF patients? We also look at the potential proportion of CF patients that the research applies to, and to what extent positive change can be had with the proposed outcomes. So, while we rate all science as at least somewhat 'relevant', those that aim to treat/control the main (and most troublesome) illnesses that CF patients get (e.g. Pseudomonas or B. cepacia) will score higher than more marginal or less worrisome or problematic bugs. Also, projects that target the most common mutation of CF (i.e. F508del) are considered more relevant than some of the more obscure mutations, simply because the outcome can positively impact a greater proportion of CF patients.

What did you enjoy most about participating on the scientific review panel?

James: Meeting and talking with researchers and other CF clinicians from across the country. I think the priceless part is the contacts and discussions I have had with these new friends. It has allowed me to learn so much that will hopefully help improve my daughter’s care and quality of life.

Rob: I most enjoy having an impact on the discussions, and the feeling of my presence in this panel being of relevance to the scientific community. At the end of the day, the fate of most people with CF lies in the hands of the scientists working towards a cure, so it is awesome to feel as though I am able to help direct their attentions (and CF Canada's money!) to the most relevant and worthwhile causes. I also enjoyed the opportunities to develop my knowledge and understanding of the disease, from a scientific (molecular, biochemical, etc.) perspective.

What have you learned by taking part in this year’s grant review?

Rob: I have learned a great deal more about CF, and also a bit more about those scientists working on behalf of the CF patient community to find a cure. I have also gained an appreciation for how important this work is to the CF community, and how much responsibility we, collectively, have in this process in terms of how decisions are arrived at and how money is best spent.

James: Given this is my third and final year, it is the time it takes to go from research to clinical trials. I have heard so many potential advances in both the treatment of the basic defect and the symptoms of the disease. However, they still seem too far away as I see my daughter still battling hard every day. There is so much that has been learned, but still so much to learn before there will be a cure. That day can’t come soon enough but from what I have seen, I feel confident that it will come.

James, this was your last year serving as a member of the scientific review panel. How do you plan to stay involved with CFC in the future?

James: Well, I have done a lot of fundraising and now I have reviewed research grants. The other area I would like to move into next is an advocacy role, both for the CF population and for my daughter. I have realized that CF patients need advocates to fight for them because they are so busy fighting the disease. I am really intrigued by the quality improvement initiative launched by CF Canada and I would like to see it expanded to every clinic across Canada. As well, I would like to make sure every CF patient has access to the latest drugs and treatments as quickly as possible as every day really does matter! I am working to achieve these last two goals in my new role as a member of CF Canada’s Healthcare Advisory Council.