Bionews Insights:
Patient Power: A Q&A about Bionews’ Patient Advisory Board with Brad Dell
By Jenn Powell, Bionews Brand Marketing Manager | November 1, 2024
Patients with rare diseases often feel unheard and misunderstood, but Bionews is changing that. By empowering patients to have a direct voice in shaping the company’s direction, Bionews is changing the way rare disease communities are served.
In this Q&A, we delve into the transformative impact of Bionews’ Patient Advisory Board with Brad Dell, director of community content. We’ll explore the board’s goals, specific initiatives, and long-term vision for improving patient experiences.
Q1: What are the board members most excited about achieving through their work with Bionews?
A: As members of Bionews’ Patient Advisory Board, we’re passionate about influencing the future of rare disease care. We’re more than just passive observers; we’re active participants in shaping the information we provide, and our products and services we create. By sharing our personal experiences and diverse expertise, we’re helping to develop more relevant and empathetic solutions.
It’s incredibly rewarding to be part of a company that truly listens to its community, but we’re most excited about being part of the team that helps Bionews act on it. Unlike many other companies, Bionews isn’t just talking the talk; it’s walking the walk.
We’ve already seen tangible changes made in response to our feedback, such as improved website accessibility and more relevant outreach strategies.
Knowing our input is directly impacting the experiences of other patients is a true honor. It’s a testament to Bionews’ commitment to putting the patient voice at the forefront of rare disease conversations.
Q2: Are there any specific initiatives or projects the board is particularly passionate about?
A: We’re really excited about working on The Rare Journey. It’s an immersive experience that shares personal stories of diagnosis and living with a rare disease. We’ve been working to make it more accessible to people with dexterity, hearing, and vision disabilities, so everyone can connect with these powerful stories.
Widening this product’s reach was special to us because we want to share that every journey is rare, and that diagnosis stories are never cookie-cutter. By sharing stories directly from the patient’s perspective, we’re fostering empathy and connecting our audience to the lived reality of disease, beyond the medical textbooks.
We’re also focused on addressing the mental health challenges that often come with rare diseases. We’re driven to provide a holistic understanding of life with disease by helping our content teams pinpoint the mental health challenges and solutions we haven’t seen covered on other sites.
The board is also working to make sure our language and messaging is inclusive and respectful of all communities. Each disease community has its own unique culture, with its own slang, sensitivities, and unspoken rules. We’re making sure our content reflects these nuances and avoids any unintended offense.
Q3: What are the long-term goals of the Patient Advisory Board?
A: We strive to establish Bionews’s reputation as a company that’s by patients, not just for patients. As the disabilities advocacy slogan goes, “Nothing about us without us.” We want the world to know we are involved in Bionews’ decision making.
Our diverse perspectives help Bionews create more robust products and content that reflects the sensitivities, desires, and needs of the disease communities we serve. By sharing our experiences, we’re working to create a more informed, inclusive, and supportive community.
Thank you, Brad!
Want to learn more about how Bionews can help you authentically engage a highly targeted rare disease audience? Contact us today.