Speaker Details

Biography

Alastair Kent was executive director of Genetic Alliance UK, the UK patient organisation umbrella body for over 200 patient support organisations for those with rare and genetic disorders. He stepped back from this role to become an ambassador for GA-UK in April 2017, and retires at the end of April. He will continue to work on health an research policy and patient engagement as an independent consultant. Alastair was made OBE for services to healthcare in 2011, and elected FRSA in 2017. He was 2017 Healthcare Advocate of the Year, and in 2018 received a lifetime achievement award from Eurordis, the European Rare Disease Organisation

Abstract

Patient engagement as a route to good health and good health care.

Patient engagement as a route to good health and good health care. Recent advances in research have brought about unprecedented opportunities for the development if disease modifying interventions in a growing number of life limiting chronic diseases. Despite this progress, most diseases still lack a diseases modifying therapy, and for those where this option exists there is no certainty of access for those affected. In the absence of a cure, health gain can best be realised through a systematic programme of engagement with patients and families that will help ensure the effective use of scarce expertise and resources, and the development of programmes that respect the autonomy of those living with the daily consequences of unmet medical needs.