Patient Advocate in Focus: Pat Fahey
Pat Fahey writes about how he got involved in the Public and Patient Involvement (PPI) side of cancer research with the Irish Cancer Society.
"Opportunity to be at the table & not on the menu"
What got me involved in helping to decide what cancer research the Irish Cancer Society invests in? I was initially apprehensive about my lack of experience and very little knowledge in the cancer research area or any research area. I need not have been concerned as I was provided with training that provided clarity about the whole process. Our hands were ably “held” by Claire Kilty (Research Manager) and her team.
The Irish Cancer Society is committed to putting patients, families, survivors, supporters and the public at the very heart of what they do. In keeping with this commitment, they are working to embed PPI in all of their research processes.
I was recently asked to take part as one of the reviewers in their first grant awarded under this process called the Irish Cancer Society Stimulus Awards (2018) aimed at providing early to mid-stage cancer researchers, nurses, and allied health professionals with an opportunity to drive forward an existing research project which, if given an extra injection of funding, has the potential to be both highly competitive and impactful.
I felt I was now actively involved in the research process and found it was a very rewarding and interesting experience and full of learning. Being involved gives you the opportunity to share your experience and contribute to future research which in time may benefit other patients. It also gives you the chance to network with like-minded individuals.
I am convinced that public involvement will improve the research process by improving its relevance and quality and it will also raise awareness and support for this vital area. If patients are not involved it fails to convey the unique expertise held by people who have experienced and live with cancer. After all patients and their families live 24/7 with their condition and as a result have a unique perspective on the impact of their medical condition (a very valuable resource).
Knowledge & Experience:
It is important to build connections between patients/public and cancer researchers as this will ensure medical assumptions are challenged and it may even lead to the identification of problems that researchers might not have anticipated. Involvement will help to keep research projects grounded and focused on the “consumer” and will also ensure by our involvement that researchers have better access to our information. It may also ensure that the Irish research portfolio is better balanced to reflect the entire cancer journey from diagnosis through treatment to survival.
- Researchers submitted their applications which included a “lay pitch” written in plain English and understandable by a non-scientific audience.
- International experts with appropriate expertise scored each application.
- Applicants were then shortlisted based on the scientific application and lay pitch.
- We had two weeks to review and score the shortlisted lay pitches on the Irish Cancer Society’s online system and provide feedback.
- We (lay reviewers) then met to discuss our reviews and decided together as to who should be awarded the funding
During the marking process we had to keep in mind the following:
- Impact: Was the research going to bring about a positive change to the lives of people affected by cancer? Impact could occur over different timescales.
- How the research will contribute to the wider conversation on cancer?
- Bias: We had to be aware of our unconscious bias when making our decision. Eradicating our biases is just about impossible, but, if left unchecked, biases can go too far. While we can’t eliminate our biases, we can keep them under control. The more you are aware of your biases the better able you are to set them aside.
So why did I get involved?
I suppose my ulterior motive is “I have skin in the game”.
My family and I have a genetic predisposition to certain types of cancer called Lynch Syndrome. If you did not have a lay summary it would read something like this…
HNPCC (Lynch Syndrome) is an autosomal dominant disorder that is caused by a germline mutation in one of several DNA MMR genes or loss of expression of MSH2 due to deletion in the EPCAM gene (previously called TACSTD1). The (MMR) genes that are associated with HNPCC include: MLH1 /MSH2 /MSH6 /PMS2.
Among individuals with identifiable germline mutations in the MMR genes based on tumour phenotyping, the role of the DNA MMR system is to maintain genomic integrity etc.
Or if you were presented with a lay summary it may read like this:
We all inherit our DNA 50% from each parent.
If we have Lynch Syndrome (LS) then one of our repair genes is good while the other one is faulty.
Think of the repair genes as two Doormen on the door at a night club. Nothing is going to get past them that shouldn’t. This is a person without LS.
Imagine one of the Doormen needs the toilet and walks off. We still have one doorman watching and keeping us safe. This is a person with LS.
Imagine the other doorman now needs to toilet and leaves. Nobody is now watching door. This is what happens when one good gene goes faulty for whatever reason. Anybody can just walk in now.
In brief, we only have one repair gene looking out for us and if it gets damaged in a cell we are left with no protection.
The Irish Cancer Society research department are seeking patient representatives to participate in their 2019 grant review process. This will involve patient representatives reviewing sections of grant applications that have been submitted to us by cancer researchers and/or participation on grant review interview panels.
If you are interested in becoming a member of our patient review panel please email firstname.lastname@example.org for further information