Enhancing decision makers’ understanding of rare diseases – a case study

In the process of assessing novel healthcare opportunities, groupH recognises that the clearest picture comes from understanding the viewpoint of all stakeholders involved. By triangulating input from patients, healthcare providers and payers, we can provide the most granular and robust insights to best inform decision making and understanding from all stakeholders in value dossiers and payer discussions.

In collaboration with Gensight¸ we are happy to share the results of our innovative patient research conducted with sufferers of Leber Hereditary Optic Neuropathy (LHON) and their caregivers. The findings of our research were presented at ARVO (1).

LHON is a rare condition which leads to blindness and disability in teens and young adults. It is a disease not well known to payers. In fact, since treatment is spread across regional treatment centres and not concentrated in Centres of Excellence, the disease is not even that well known to many specialist doctors. In cases such as these, the perceptions of patients are vital to shed light on the key unmet needs associated with the condition, as well as to understanding what measures would most improve the quality of life of patients and their caregivers.

groupH conducted creative and engaging focus groups across the US and Europe, with results illustrating the impact of the disease on the lives of patients and their families presented in poster format for scientific publication.

Please click here to view the results in Scientific Poster format as PDF.

Please click here to view the results in Word document format as PDF.

1 Leber Hereditary Optic Neuropathy (LHON): a qualitative study on the experiences and hopes of patients and caregivers. Presented at the Association for Research in Vision and Ophthalmology Annual Meeting 2015.