Empowering Patient-Scientists

A Framework for Inclusion in Research

This blog is co-authored by Victoria Daylor and Amy Weintraub (see bios below).

The intersection of patient experience and scientific research is a powerful and often underutilized space for innovation. By building frameworks that integrate patient scientists across all disease areas, we can transform how research is conducted and, ultimately, how medicine is practiced. Patient involvement in research ensures that studies are grounded in real-world relevance while empowering individuals to contribute to solutions that impact their lives and communities.

Why a Patient-Scientist Framework Matters

• True Relevance of Research
  Research driven by patient input ensures that studies address the most pressing questions and challenges faced by those living with a condition. Patients bring unique insights that might otherwise be overlooked.

• Supporting Patient-Led Hypotheses
  Tools, training, and mentorship enable patients to take the lead in shaping research questions that matter most to them.

• Empowering Patients to Be Part of the Solution
  This approach shifts the narrative, putting power back into patients’ hands.

• Building Trust Through Listening and Understanding
  Patient involvement fosters trust within communities, bridging gaps that often exist between researchers and the people they aim to serve.

• Research Thrives When Knowledge Spreads
  The impact of involving patient-scientists extends beyond individual studies. As knowledge and expertise spread, they empower broader communities, catalyzing further progress.

• Representation Matters
  Seeing researchers and medical professionals with disabilities or lived experiences similar to their own is inspiring for patients and vital for inclusivity. Representation in science and medicine fosters a sense of belonging and shared purpose.

• Accommodations Benefit Everyone
  Supporting all scientists, including those with disabilities, through accommodations allows diverse perspectives to thrive.

Patient-Scientists in the Norris Lab

I want to take a moment to mention the lab where I am doing my postdoctoral research, and where Amy and Victoria also contribute to research efforts as patient scientists. In the Norris Lab, at the Medical University of South Carolina, led by PI Dr. Russell “Chip” Norris, we’re committed to creating opportunities for patient-scientists to engage in meaningful research. Our Gensemer hEDS Intern Program (HIP) provides training, mentorship, and collaborative opportunities for individuals passionate about advancing science while drawing from their lived experiences with or personal connections to Ehlers-Danlos Syndromes (EDS) or Hypermobility Spectrum Disorders (HSD).

This initiative is designed to empower students to gain hands-on experience in a supportive research environment. We’re thrilled to share that applications for the Summer Intern Program are currently open! If you’re a student interested in biomedical research and want to work in an environment that values your voice and experiences, we encourage you to apply. You can find more details and application information here.

By fostering patient-scientist collaborations, we’re not just advancing research—we’re reshaping the future of medicine. A future where patients are partners, and their voices are central to discovery and innovation. For additional information on the patient-scientist initiatives in the lab click here. And to check out the visiting scholars short-term program, head here.

We strongly believe this is important in all disease areas, and hope to see other research and medical groups adopt this model.

Some other efforts are already underway to support patient-led research:

• The Patient-Led Research Collaborative is working in a similar model to make progress in long COVID research.

• Remission Biome is another example focused on ME/CFS, Long COVID, and other infection-associated chronic illnesses.

• Dr. Sonia Vallabh and her research into prior disease.

• The Patient Led Research Hub, which supports patient-driven research efforts.

However, official “training” programs for young researchers wanting to get involved are lacking. Patient involvement in research, starting early in scientific and medical careers, ensures that studies are grounded in real-world relevance while empowering individuals to contribute to solutions that impact their lives and communities.

About Victoria Daylor: Victoria Daylor is a patient scientist with hEDS, who graduated from the Boston Conservatory then later the Postbaccalaureate Premedical Program at Columbia University. Victoria is a Program Coordinator in the Norris Lab and uses both research and personal experience to share educational posts on Instagram about Ehlers-Danlos syndrome, joint hypermobility, and disability. Victoria is looking forward to beginning her medical education next year. Follow Her On Instagram.

About Amy Weintraub: Amy Weintraub is a patient scientist and current Research Specialist at the Norris Lab. Amy graduated from the University of South Carolina last year after studying Mass Communications with an interest in science and health communications. Ever since receiving her hEDS diagnosis a few years back, Amy’s grown intrigued by science and research, compelling her to join the lab to broaden her knowledge and help out. She hopes to use the personal knowledge she has gained throughout her medical journey to spread awareness and advocate for others online dealing with complex conditions. Follow her on Instagram.

Please Note: I am currently on maternity leave (or nearing my expected leave). Most of the content you’ll see during this time was pre-scheduled in advance and was thoughtfully created and scheduled before my leave began. I appreciate your understanding and patience, as I may take longer to respond to any messages or questions. Thank you for your support!