Have you ever wondered, what is the true value of a partnership among industry, patient groups, and the patient community within drug development? As someone who has been involved in each area at different timepoints of my life, I can tell you firsthand that – it’s a very big deal. Patient groups and the community must be included throughout all stages of drug development if we truly want to advance clinical research.

My own patient advocacy journey started at the age of 15 when I first learned about my mom’s diagnosis with Huntington’s Disease (HD) after being misdiagnosed for the first 5-7 years of her journey. Doctors originally diagnosed her with major depression and mood swings, while neighbors thought she was drinking during the day due to her poor balance and wobble movements. All of these signs ended up being symptoms of HD.

After taking a few years to process this new normal, I decided to get involved with the community by hosting fundraisers and raising awareness about HD. Eventually I took on different leadership roles with patient groups to help support the unmet needs of the HD community. At one point I even founded a patient organization devoted to supporting young adults with rare and chronic diseases.

Fast forward to today where I have the privilege to oversee patient advocacy and engagement efforts for a small biotech company working in HD. Here is what I have learned:

1. Patient groups and patient community members play a crucial role in drug development. They are the ones with lived experiences and understand the disease in a way not found in textbooks or in a laboratory.

2. By sharing about their lived experiences with biotechnology and pharmaceutical companies, patients can help shape the research taking place, including what diseases get attention, which endpoints are studied in trials, and what does success look like from a patient perspective. Feedback can happen through guest speaking opportunities to employees of a company, clinical trial design, educational materials, how to get the word out about clinical trial participation, among many other opportunities!

3. Patient input matters in every stage of drug development from discovery to post approval: helping researchers understand the disease, contributing to the design and recruitment strategies for clinical trials, advocating for access to therapies if approved, and sharing experiences with approved therapies.

For a partnership to be successful, it is up to the patient group and community members to get involved by asking questions or raising their hand to help push research forward. Challenge companies on what they know about diseases and the status of their work. It certainly takes a village to drive innovation, especially in rare diseases. Even more for diseases for which no treatments exists. For those of you who are already involved in some of these opportunities- thank you for continuing to advocate to help make a difference in drug development!

Seth Rotberg is a nationally recognized patient leader, healthcare industry professional, and TEDx speaker. After his mother’s 17-year battle with Huntington’s Disease (HD), Seth made it his mission to improve the patient experience in healthcare. He currently oversees patient advocacy and engagement efforts at Prilenia and the views expressed in this article are those of a Prilenia employee.

Please note this guest blog post is sponsored by Prilenia.