How I Made Patient Advocacy and Health Leadership My Career

I decided to turn down my first big girl job a year after college. I have cystic fibrosis (CF), and my life had other plans in store-keeping up, in that sense, wasn’t in the plan. At the time, I only had 30% lung function and realistically, I wouldn’t be able to maintain 8+ hour work days and take care of my health to keep infections away and stay out of the hospital.

In our society, so much emphasis is placed on the origin of our success through our careers, and I felt this pressure too, despite being aware that I was someone with a chronic illness who didn’t know what even a few months in the future might bring. Whenever we meet a stranger, one of the first questions we ask is: “What do you do?” This was one of the hardest decisions in my life and I felt like I was giving up a part of my identity.

I vowed to find my success in other ways

I began working part time in a microbiology lab that studied public health outcomes of antibiotic resistance in municipal water. I became interested in how the public is educated on health matters. More specifically, I was interested in how patients understand health information and the value of this in self advocacy.

Also, some of the microbiology work that I did in the lab had intersections with CF too, as common infections in CF lungs are treated frequently with antibiotics, which can lead to resistance. With this combined knowledge, I became interested in how I can use my voice as a patient and explore my involvement in CF research.

Working with the CF Foundation and helping researchers

I began working with the CF Foundation, participating in various research related advisory committees tasked with providing patient perspectives on research questions. We also worked with researchers and professionals to help them and the general public communicate and relate to each other. This expanded my opportunities to speaking at conferences about my healthcare journey, the value of the patient voice in research, and how we as patients can harness this raw understanding of the healthcare system to work with researchers and industry to advance healthcare together.

Becoming a patient advocacy and engagement consultant

When COVID began, and the lab closed for a while, I decided to focus even more on my patient advocacy work, and established myself as a patient advocacy and engagement consultant. I built my website and brand, putting every advocacy related engagement I had done that I could link to online including, articles, speaking recordings, and memberships on advisory boards. This slowly led to having more opportunities to work with healthcare companies in patient advisor roles and expanding opportunities on advisory boards, committees, and panels.

I now have experience collaborating with healthcare and pharma companies. I've spoken directly to companies by presenting about my healthcare journey and how they can best support patients with my diagnosis and overall patient needs. I have provided consulting and patient experience feedback about clinical trial experiences and the use of mobile patient monitoring technology. And I am a patient advisor to a few other pharma and healthcare companies where I provide ongoing feedback to new initiatives, marketing, and overall input on patient centricity.

Nearly all of these partnerships are successful because of the thought-out engagement process that the company has invested in before getting patient involvement, or the case of others, we are working together to build the partnership and revolutionize their engagement and patient voice strategies.

My experience and journey of navigating a chronic disease and my journey to advocacy, has been a process, and certainly did not happen overnight.

How you can start 

Some of the first steps I advise for other advocates to do to bolster their patient advocacy platforms is create a website, share and reshare content on social media related to their advocacy area, and get their name within the healthcare industry by authoring healthcare and advocacy articles, and learning how to network. This is key!

I encourage advocates to apply for opportunities they may not think they qualify for, to expand their network. Don't be afraid to connect with other established advocates and industry patient engagement teams through LinkedIn! Take stock in the vast knowledge they possess about their disease and the healthcare space in general.

Lastly, continually be inquisitive and have a desire for gaining new insights and information that will not only aid their own healthcare, but that they can utilize to inform companies and researchers across the healthcare continuum on the needs of patients.

Continuous efforts

I want to emphasize that I am still working towards becoming a more well-established patient advocate myself. But it takes grit and determination and a passion to make an impact in the advancement of healthcare. I want to serve as an example and inspiration for what others can achieve as well.

Only more recently have I been sought after for patient advocacy and consulting opportunities – up until this point I have sought out every engagement opportunity I was granted. Nonetheless, my previous lacking of prior exposure or experience, didn’t deter me from seeking more exposure and experience. I encourage you to do the same!