Generating data led diagnosis accelerators in rare disease

Written by Gavin Jones on Thursday 10th June 2021

OPEN Health recently held our latest panel on our current theme of Navigating Pathways to Better Outcomes in Rare. This conversation was on exciting developments in technology that enable far greater potential for utilising data to improve speed of diagnosis in rare disease. This remains the fundamental challenge and much work needs to be done to reduce long diagnostic odysseys and their impact on patients, families and health systems.

Advances in technology like machine learning offer lots of potential in the effective utilisation of data but the conversation highlighted that alongside these advances we must ensure that the patient community are always front and centre in our thinking. It is also important to identify data sources that offer the opportunity to develop effective patient identification algorithms which can be applied to other health systems. Effective education and communication with the clinical community closes the loop on this type of initiative to ensure positive change is mobilised and embedded.

You can listen back to the conversation here and if you would like to discuss any of the points raised please contact us. 


Sean Gordon – Founder Rare Funding Team, Health Tech Columnist, Advocate

Annie Rankin – Strategy Director Communications, OPEN Health

Tony Cox – Development Director RWE, OPEN Health

Viktor Chirikov – Associate Director HEOR, OPEN Health

Panel Chair – Gavin Jones, Global Advisor, Rare Diseases, OPEN Health