At Johnson & Johnson, Our Credo emphasizes our commitment to patients. The J&J Center research and Transparency Reports reflect the belief that patient-centered innovation, and the policies that support it, are essential to improving health outcomes, expanding access and building a sustainable healthcare system. This belief is why patient-centered research matters. And it is why we need to rethink how value is defined in healthcare.
Putting patients first requires active listening and engagement. It means going beyond traditional recommendations and gaining an understanding of what living with a medical condition is really like from people with lived experience.
Living with retinitis pigmentosa: the patient’s reality
A recent study sponsored by Johnson & Johnson and conducted in collaboration with Evidera Patient-Centered Research illustrates the opportunity to gain novel insights from research on the preferences of patients with lived experience using retinitis pigmentosa (RP) as a case study.
RP is a rare, progressive genetic retinal disease affecting approximately 1.5 million people worldwide, causing progressive vision loss generally leading to legal or total blindness by the fourth or fifth decade of life. Unfortunately, there is no cure.
For someone living with RP, their experience provides greater insight into how preserving vision can mean staying employed, navigating safely or remaining independent. These day-to-day realities shape how patients think about treatment benefits.
What the study found
The study investigated how preferences differed between people living with RP and members of the general public. The study found that:
- Patients with RP placed greater value than the general public on delaying visual function deterioration and maintaining the ability to get around.
- The general public indicated a higher preference for the ability to get information by reading than patients with RP.
- The general public placed more weight on increases in life expectancy when faced with a trade-off in visual deterioration.
To fully understand RP’s burden and treatment impact, we must draw directly from patients’ perspectives, which provide insights meaningfully different from those of the general public.
Why this matters for patients
Understanding patient perspectives on what they value will lead to better decision-making.
Some proposed U.S. value assessment frameworks take a standardized, one-size-fits-all approach. They often make a simplifying assumption that general population preferences regarding disease burden and associated outcomes accurately reflect patient preferences.
This can be especially problematic for rare and progressive diseases like RP. Patients’ lived experience provides insights into the impact of disease that those without the disease may not be aware of or fully appreciate.
When patients are placed at the center of value assessment, healthcare decisions are more likely to support access to treatments that truly make a difference.
This research was funded by Johnson & Johnson and conducted in collaboration with Dr. Kevin Marsh, Myrto Trapali of Evidera, Patient-Centered Research. For full details on the study design, methodology and limitations, see: Marsh K. et al. “Valuing Maintenance of Visual Function in Retinitis Pigmentosa: A Discrete Choice Experiment With Patients and the General Public.” PharmacoEconomics-Open. 2026;doi:10.1007/s41669-026-00638-x.
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