Fernanda Copeland, patient engagement officer (PEO) for Avrobio, firmly believes in the power of collaboration, and the importance of involving patients early on in the development of any therapy. She talks to RARE Revolution about her role in empowering patients and how she hopes the role of PEO will continue to be elevated within the healthcare industry
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?
I have been with AVROBIO since April of 2018. We are a fast-growing clinical stage lentiviral gene therapy company located in Cambridge, MA. One of the main reasons I chose to join AVROBIO was that the company was young, small, and had only one programme in the clinic. AVROBIO’s CEO, Geoff MacKay, spoke to me about the responsibility we have to patients when developing gene therapies and his personal goal of bringing gene therapy mainstream. I felt very fortunate to join a company that recognised the value of the patient voice so early in drug development. I knew I could make a difference and I was all in from day one.
Two of the Fabry patient advocacy organisations, Fabry Australia and the Canadian Fabry Association, had relationships with the investigators in their respective countries. That was a great start to connect advocacy to clinical trials and most importantly to connect with a group of empowered and informed patients. As an organisation, we have steadily deepened our collaboration with patient communities, including learning from and gaining perspective from them prior to and during clinical trial design. Our advocacy mission is to establish relationships with advocacy groups early, substantively and consistently. There is still room to improve, but we make progress every day.
My hope is that the future role of advocacy enables industry and patient leaders to work closely on the co-development of new treatments. It is also my wish that patients become knowledgeable about the drug development processes and regulatory requirements so that they can be equal partners in healthcare and drug development right alongside clinicians, industry and regulators. I strive to develop a system to make it possible to incorporate patient needs and perspectives in every decision. I also hope that decisions for patients and families are based on quality of life and effectiveness and less based on cost. In addition, I would like to better formalise the profession of patient advocacy to become a core part of healthcare training among other disciplines.
Jack Johnson, executive director Fabry support and information group, Fernanda and Geoff MacKay, AVROBIO CEO. Our first patient advocate to visit AVROBIO in 2018
What does a typical week entail for you, and are there any specific projects you can tell us about?
Weeks are very busy and go by fast. At AVROBIO we are developing lentiviral gene therapies for six rare diseases and work with about 50 patient advocacy organisations on a regular basis. Aside from working directly with patient communities, we serve as a resource for internal teams to ensure they know and understand as much as possible about the patients and families affected with these diseases and can incorporate that into their work and plans. My team secures patient input for program development, develops patient-facing, scientifically accurate educational materials, helps the organisation understand what it is like to live with the disease, and finds ways to motivate and inspire employees so everyone in the company feels the same responsibility and dedication to patients.
What were your personal motivations to taking up a role in patient engagement?
I was born to do this. This is my life calling and passion. I realised this was my passion when my grandfather became severely ill during my college years and needed dialysis and a very specific nutrition prescription to manage his medical conditions. I started my career as a registered dietitian helping patients and families understand their medical diagnosis and how they can best manage it themselves. Medical nutrition therapy is about elevating patient knowledge and empowering people to be the best self-advocates they can be. This determination to elevate knowledge so patients can be informed decision makers has guided my career for almost two decades. I started my industry career educating pharmaceutical companies’ medical and sales teams to be more compassionate and learn what was really important in a person’s life. Now, I have the privilege of helping communities and AVROBIO better understand the complex decisions associated with participating in gene therapy clinical trials. I try to make sure that patients have as much clear and accurate information as possible before embarking on a journey with a new potential treatment. My small contribution is about ensuring that what is important for patients is incorporated from beginning to end.
What makes the role of patient engagement officer important to your organisation?
The company can’t be successful without patient engagement. Lysosomal disorders are heterogenous and rare. Patient engagement is responsible for clinical trial awareness, ensuring clinical trial protocols are amenable to patient participation, that clinical trial endpoints are representative of the unmet needs of patients and that all stakeholders understand the monumental commitment patients and families make to participate in a gene therapy trial, among other activities critical for success. Patient engagement also helps patient communities understand the challenges industry faces when developing these therapies so we can work together toward common goals.
In your role, how do you ensure the patient voice remains central?
It’s about not compromising. Patient engagement is beyond talk. It is all about how we make decisions. Many of these decisions are very tough and have consequences. My leadership knows that doing the right thing for patients is the right thing for the business. My job is to ensure the patient perspective is included when we need to make hard decisions and we stay true as much as possible to our patient-first value.
How do you reconcile operational business needs with elevating the patient voice?
I’ve learned over the years that we are all part of the same community. Industry, legislators, patients, the business and investors. It takes maturity and long-term commitment to carry the long-term vision of improving lives for patients. We work in a collaborative environment where many functions weigh in on important decisions that impact patients’ lives.
Rare disease day 2020, with Nancy Stack from Cystinosis Research Foundation
What are the most rewarding aspects of your role?
Helping people see possibilities and having faith in a better world. For patients and families, it is bringing these possibilities to reality. From my background in clinical practice, nothing is more rewarding than when someone feels competent and empowered. Patient advocacy is about enabling someone to move from a passive to an active role in their healthcare.
What is your proudest moment in your career thus far?
Every time I choose to be uncomfortable to be a better person. Career successes are highly correlated to personal growth. At times when I am going through something that seems extremely difficult, it has led to great moments of happiness and satisfaction. I recently learned that it was a dream come true for a few individuals from Brazil to participate in a gene therapy trial, knowing that I played a very small part to make it possible has been extremely rewarding.
What advice would you give someone considering working in the rare disease space?
In rare disease, you must dedicate time to learn from patients and families as often as possible. Companies working to develop therapies in rare diseases are often young and entrepreneurial. Creativity and agility are needed to uncover needs and identify where the populations exist. Communities are often as knowledgeable about their own disease as the clinician experts and provide a unique perspective in the development of therapies.
Working in rare diseases means that you are all in with patients and their families. To be prescriptive and specific: at least once a month, make an effort to learn from the patient community. Search videos, join a walk, participate in rare disease day activities, or learn about the legislative bills that are in discussion.
If you weren’t Patient Engagement Officer of [insert company], what was Plan B? What did your 10-year-old self want to do as a job?
Plan B was to be a clinician; a primary care physician to help patients and families. As a 10-year-old, I wanted to be a superhero to do what appeared to be impossible.