Navigating Professional Relationships as a Patient Leader: An Interview With Kathy Reagan Young

While she was first focused on patient leadership within the multiple sclerosis (MS) community, Kathy Reagan-Young realized she wanted to elevate her footprint as a Patient Leader and help others realize their worth. Still very focused on MS advocacy, Kathy also mentors Patient Leaders in navigating professional relationships within the healthcare space. By supporting and training people with chronic illness to find and create flexible remote work that accommodates their health and generates an income, Kathy has so much wisdom and knowledge to share.

At the beginning of her journey, companies within the MS space approached Kathy to collaborate – to create materials and campaigns, or to sit on ad boards. As she navigated these relationships, Kathy started to identify ways she could be valuable and flipped the script. She then began seeking partnerships and finding ways to collaborate like never before!

In this interview with the Social Health Network, Kathy talks about her experience working with pharmaceutical companies and offers tips to other Patient Leaders. We encourage you to connect with Kathy and learn more about her work through her Social Health Network profile

To learn more about navigating professional relationships related to patient leadership, take the Health Union Patient Leader Certification program on the Social Health Network platform.

Social Health Network: What are the most important factors to consider when working with a pharmaceutical brand?

Kathy Reagan-Young: I consider the brand’s reputation, the scope of work, and the brand’s relevancy to your disease state's ecosystem

• Reputation – If the company does not enjoy a stellar reputation IN YOUR COMMUNITY, aligning yourself with that company could sully your reputation in the eyes of your community. If there is even a question, I would pass on that particular opportunity.
• Scope of work – Requiring a scope of work for every project is imperative for clarity. You want to be sure you understand what exactly is expected of you with a clear delineation of time frame. What is the project, what are your responsibilities in that project, what is the due date, and are there milestone due dates throughout the project? Not only will this help at the onset and throughout the project, but upon completion, both parties (you and the company) can clearly see your successful fulfillment of YOUR responsibilities as set forth in the scope of work.
• Relevancy in my disease state’s ecosystem – "Fringe products" (those with little relevancy to your community) can come off as purely money-motivated. If there is a question as to whether or not the company’s products relate to your community’s needs, aligning your advocacy with that product can tarnish your hard-earned reputation within your community. Your reputation and your community’s trust are worth much more than any paycheck you might get from a “fringe” partnership.

SHN: Think about the best partnership you’ve had with a brand. What made it successful?

KRY: I met with the brand and made suggestions as to how we could best work together and bring their message to the multiple sclerosis community. I brought ideas to them, and I critiqued the ideas that they had.

We truly worked together on the message and on choosing the best platforms to use for that message. They had a destination they were trying to get to, and they listened to me when I supplied the map!!

What tips or advice would you give to other Patient Leaders about working with a pharmaceutical brand?

Be honest and transparent. Be clear on what you are capable of and willing to do. Those two things may be different. Know your value before you even have one meeting. Don't be intimidated. Be respectful.

Do your homework. Know about the company and the product in the first meeting. Ask questions. Ask more questions. Be clear on your limitations or boundaries. Get everything in writing. Underpromise and over-deliver!

What else would you like to share?

Don’t be afraid to ask for help. It's good if you have a mentor or a coach to help you practice your presentation skills and offer you constructive criticism. Don't be afraid to ask other Patient Leaders for their advice, especially if they have worked with that particular company in the past.

Recognize your worth. Before each of your interactions with the pharmaceutical company, take a deep breath and recognize your own worth and the value you are bringing to this table. Your lived experience is invaluable to them and not something that someone else inside their company could provide. You are uniquely qualified for this project, and that's why you are there.