Rachel Radomski is senior director of patient advocacy at Harmony Biosciences. She talks to RARE Revolution about how patient advocacy is at the heart of everything they do and about how proud she is to help elevate the patient voice
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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 joined Harmony in the early part of 2019, while the company was pre-commercial and very much in ‘start-up mode’ to build our patient advocacy function from the ground up. The most exciting part of this opportunity was Harmony investing so early in the patient communities and incorporating the patient-voice into our work through our advocacy work. Our advocacy function also exists completely separately from our commercial team, which is very important to me as a patient advocacy professional. I have had the privilege and opportunity to lead Harmony’s work in the narcolepsy and sleep disorder advocacy space, but as we grow and have entered the clinic in two more rare disease areas (Prader-Willi Syndrome and myotonic dystrophy), it has been exceptionally exciting to develop our Advocacy team and build out a footprint in those patient communities.
What does a typical week entail for you, and are there any specific projects you can tell us about?
No week is the same at Harmony, but a typical week is a mix of engaging externally with our advocacy organisation and non-profit partners combined with working with my internal colleagues as we work to keep patients at the heart of all we do. Of late, some exciting projects have been building and facilitating internal patient advisory boards in disease communities where we are interested in exploring clinical possibilities. I firmly believe you cannot understand any disease until you are living with it, either as a patient or caregiver. These patient advisory boards allow my colleagues at Harmony to understand a person’s journey to diagnosis and learn about their ‘normal’, including daily life, symptom impact, experience with health care professionals, treatments, and clinical trials. By actively listening, we can bring these experiences and the patient-voice into the drug development process.
What were your personal motivations to taking up a role in patient engagement?
I began my professional career working in public policy at the federal level. As a political junkie growing up, it was always my dream to work in Washington, DC and ‘make a difference’ somewhere. When I got to DC and had the opportunity to work in healthcare, specifically the biotechnology and pharmaceutical industry, I found what excited me most about my job was engaging in partnerships with the patient and non-profit community to work together towards a common goal. After about 10 years working in a government affairs role, I was able to transition my career to a new and growing role of patient advocacy and engagement and I have never looked back!
What makes the role of patient engagement officer important to your organisation?
At Harmony, we have five core values, with the first being keep patients at the heart of all we do. I see my role as the literal embodiment of that value. Whether I am working in the field at a non-profit organised event or bringing the patient-voice into an internal project, I am always working with the lens of what matters most to the patient communities we serve. I also think something special I have found at Harmony is that our advocacy function and the patient-voice is valued by senior leadership and we are consistently asked to have an active voice in all levels of our business.
In your role, how do you ensure the patient voice remains central?
I mentioned it before and I will again, but I think it is most important to actively listen to understand and appreciate what makes someone and their disease experience unique in the rare disease community. I also think it is important to remember that people living with rare diseases are often accompanied on their journey by loved ones, caregivers, and other advocates, all of whom bring their own perspectives. I always try to bring that holistic view into my work.
How do you reconcile operational business needs with elevating the patient voice?
Frankly, I do not find this to be a challenge at all at Harmony. Our first core value is keeping patients at the heart of all we do and the patient’s needs are our business needs.
What are the most rewarding aspects of your role?
I think the COVID-19 pandemic has shown me, in all aspects of my life, personal interactions are the most important and meaningful. I recently returned from my first business trip in 15 months where I had an opportunity to visit a family summer camp for children living with Prader-Willi Syndrome (PWS). Spending a day with the kids and families in the PWS community was eye-opening and heart-warming. I feel immensely lucky I get these first-hand experiences, which serve as a daily motivator to keep working on behalf of these rare disease patients and their families.
What is your proudest moment in your career thus far
When I joined Harmony, I wanted to create a patient advocacy function that went above and beyond traditional industry and non-profit partnerships. Harmony leaned into the idea and two amazing annual grant programmes were born- Patients at the Heart in 2019 and Progress at the Heart in 2021. These grants allow for innovative, patient-centric programmes to be funded through a competitive process that also engages cross-functional Harmony employees during the review and selection of winners. To date, Patients at the Heart has awarded $139,000 in funding and this year, Progress at the Heart will award Harmony’s first grants to address disparities, injustice, and inequities in the rare disease and sleep disorder community. I could not be prouder!
What advice would you give someone considering working in the rare disease space?
The rare disease space is diverse, but I have found the communities so cohesive and excited to partner with each other, the umbrella rare disease patient organisations, and industry. I think that is the most important takeaway is breakthroughs, whether they are happening in lessening time to diagnosis, public policy wins like the 21st Century Cures Act, or the successful development and launch of exciting new treatments, are not happening in a silo. We are all in this together and we win when we collaborate!
If you weren’t Patient Engagement Officer of Harmony, what was Plan B? What did your 10-year-old self want to do as a job?
As an avid sports fan, it has always been my not-so-secret dream job to be a sports reporter. In my dreams, I see myself on the side-lines of Monday Night Football or covering my beloved women’s national soccer team as they go for the gold in Tokyo at the Olympics this Summer. Alas, Erin Andrews already has my gig. In all seriousness, I do think someday I will work in the non-profit community for causes that are personally important to me, like cystic fibrosis.