Andrew Bolan is the associate director for patient & medical community engagement at ProQR, and regards his role as bridging the gap between the patient's lived experience and the science lab. He talks to RARE Revolution about the exciting times we are living in, in terms of scientific development, and the crucial role the patient plays in driving these advancements PEO series: Meeting the beating hearts behind the rare brands
How new is the patient engagement role in your organisation, how has it evolved and what are your hopes for the role in the future?
Patient engagement has been a part of the ProQR organisational DNA since its founding in 2012. ProQR was founded by our current CEO, Daniel A. de Boer. A few years prior to this Daniel and his family were faced with the diagnosis of cystic fibrosis for his newborn son; an incurable rare genetic disease. Daniel sought help from experts in the field of drug development and formed ProQR to help people like his son.
All ‘ProQRians’ remain passionate advocates for the rare disease community and are determined to make a difference in the world. To achieve this goal, ProQR strives to integrate the patient voice into our decision-making throughout the drug development process as we believe that a patient-focused strategy is crucial to our success.
What does a typical week entail for you, and are there any specific projects you can tell us about?
Being the associate director for patient & medical community engagement I work across the organisation in a range of projects. From medical affairs discussions about our scientific platforms and how we talk about our science, to our clinical programme teams sharing the patient perspective in our protocol development and clinical trial recruitment. I also work very closely with our communications team to feature patient blogs, community statements and accessible educational materials on our webpage. We have a dedicated patient community page which I take great pride in being a one stop shop for anyone wanting to understand how we work at ProQR.
A specific project I am very passionate about is the ProQR Patient & Caregiver Steering Committee. This is a committee, launched in January 2020, which features 10 or so wonderful individuals living with Leber Congenital Amaurosis Type 10, Usher Syndrome Type 2a and Retinitis Pigmentosa. No subject is off the table and it has been a wonderful forum throughout Covid-19 to keep our company feet to the fire. We use the forum to speak about a range of topics, mostly as you can expect, throughout 2020 has been how we can help battle the Covid-19 isolation which has had a big impact on the inherited retinal disease community.
What were your personal motivations to taking up a role in patient engagement?
I have been incredibly lucky to work for some very passionate patient engagement directors throughout my career. Learning from them and understanding that as a patient engagement person in a pharmaceutical company, you have a huge responsibility to listen more than talk. I personally have always enjoyed learning about people and their personal journeys—the fact I can use this in my work to make a company’s patient engagement better is a huge motivation.
Starting at the Association of the British Pharmaceutical Industry (ABPI) in London, I saw the power of the patient voice across healthcare policy. That gave me a real passion to helping bridge the patient community with the life sciences industry bringing forward innovative treatments for areas of high unmet need. I continue to be an ardent believer in harnessing the growing importance of the lived experience of patients to improve and quicken the pace of medical research.
What makes the role of patient engagement officer important to your organisation?
I feel a large responsibility of bringing people who we are ultimately trying to help with our RNA therapies in front of my hard-working scientific colleagues. Bridging our RNA science and petri dishes with people and families outside the laboratory. In pharmaceutical companies, having worked in small, medium, and large organisations, the people living with the conditions you are trying to find solutions for sometimes are left out of the process. A patient engagement role really has an external and internal mandate to connect the real world with that of the scientific workspaces.
At ProQR I have really worked hard to bring those families into our weekly work. Since I joined in November 2019, we have hosted over 20 community speakers, many on Zoom due to the Covid-19 situation. However, it is not just community speakers which play a role in patient engagement. It is the daily, weekly, and monthly discussions with advocacy organisations who are working hard on health policy changes to increase genetic testing in different countries to make sure when therapies and solutions come along, people have accessibility to them.
In your role, how do you ensure the patient voice remains central?
Unlike other companies I have worked for, ProQR gives me access to all levels of the company from senior management to clinical team colleagues daily. Regularly updating all levels of ProQR about the importance of the patient voice and how it can improve what we are doing, speeds up our clinical research and helps with clinical trial participation. In my role I get to work with wonderful patient advocates, patient organisations and our own ProQR Patient & Caregiver Steering Committee. Making sure their feedback is central to all updates I give to our clinical teams, regulatory and medical discussions. Working in inherited retinal disease being a sighted person, I must work closely with the community to make sure I am representing their voice correctly.
How do you reconcile operational business needs with elevating the patient voice?
Being founded as a company by Daniel, following the diagnosis of cystic fibrosis in his newborn son, the patient perspective is really elevated higher than I have seen it in any of the other pharmaceutical company I have worked in. Alongside this is working closely with the patient community to bring educational awareness to inherited retinal diseases (IRDs), which is a real win-win in helping people understand the big scientific paradigm shift happening in the disease space.
What are the most rewarding aspects of your role?
Getting to work with such passionate and dedicated patient advocates and individuals living with rare conditions. Being a non-scientific person, I studied politics at Swansea University, I see a big aspect of my work to showcase the fantastic genomic science we are doing in a language anyone can understand.
We are living in quite an amazing time for new treatments, techniques, and genomic science. However, this is not worth a lot if we don’t bring people along with it.
What is your proudest moment in your career thus far?
That is a tough question. Probably helping my parents understand what RNA (Ribonucleic acid) stands for and how much of a crucial role it plays in protein development. It took a few cups of tea over Zoom to get them there! I am very lucky to have worked across a wide range of conditions in my career to date, from asthma and chronic lung diseases, the central nervous system, Alzheimer’s Disease and IRDs. I would not be able to pin down a single proud moment, as I think the more I can do as a non-scientist to bring the impact of genomic level research to the public is an achievement every day. If I can help someone navigate what an RNA future therapy might mean for them, then I am very happy.
What advice would you give someone considering working in the rare disease space?
I find the rare disease space one of the most powerful spaces to work in. I would encourage anyone who has a passion for hard work, tough discussions and a get stuck in attitude to really think about a career, role or time supporting the rare disease community. As the advancements in science continue, more and more treatments are coming for some of the hardest and rarest conditions. It is a very exciting time to get involved.
If you weren’t Patient Engagement Officer of ProQR, what was Plan B? What did your 10-year-old self-want to do as a job?
If I could turn back the clock, I think my plan B would definitely have been either a professional cricketer, striding out to a packed house at Lord’s to face the Australians in the Ashes, or singing in front of a packed Albert Hall covering big band classics like ‘For once in my life’ and ‘Beyond the Sea.’
To find out more about the work of Pro QR, please visit; www.proqr.com