Although good examples of coordinated care exist, there are still serious failings in how care is coordinated for many with rare diseases (including undiagnosed genetic conditions).
Many patients do not receive care at a specialist clinic or have access to a named care coordinator, and they have no choice but to become a ‘project manager’ of their own healthcare. Clinic appointments can be frequent and involve significant travel. The UK Strategy for Rare Diseases (published in 2013) said that it was essential to coordinate care for people with rare conditions and more needed to be done to improve coordination. Unfortunately, there is no strong evidence as to how this should be done for different patients and further research in this area is needed.
Genetic Alliance UK is part of a wider team of academics and experts in rare diseases addressing this gap through a new research study, COordiNated Care Of Rare Diseases (CONCORD). The study, beginning in June 2018, will run for two and a half years and is funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research Programme. The study is led by Professor Steve Morris, a health economist at UCL.
The aim of the study is to investigate how care of people with rare diseases is coordinated in the UK, and importantly, how patients and families affected by rare diseases, and the healthcare professionals who treat them, would like care to be coordinated.The detailed objectives of the study are:
The CONCORD research team will do this using interviews, focus groups and workshops (qualitative research) and a survey (quantitative research). We will hold events for healthcare professionals, people who decide how services are provided (commissioners), and patients and families, so they can tell us how to make our findings helpful to them.
We are involving patients and family members throughout the study, and establishing a patient advisory group to advise on recruiting participants and interpreting the findings. The advisory group will be run by Lara Bloom (Ehlers-Danlos Society) and Kerry Leeson-Beevers (Alstrom Syndrome UK) who are also members of the research team.
The study has so far included patient interviews, which have been completed, and focus groups for patients and carers and healthcare professionals, which are ongoing but no longer recruiting. The study will culminate in a widespread survey, with responses from rare disease patients, carers and healthcare professionals, to be launched in spring 2019. To find out when the survey is live, keep an eye on our social media feeds or sign up to our newsletter here.