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 based at UCL, COordiNated Care Of Rare Diseases (CONCORD). The study, began in June 2018, and 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 health economist Professor Steve Morris.
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:
To undertake a review of published evidence to identify in detail what ‘coordinated care’ means, what the components of coordinated care are, and how coordinated care for people with rare diseases might be similar or different to coordinated care for people with other conditions.
To understand whether and how care of people with different rare diseases is coordinated in the UK.
To analyse preferences for different types of coordination by patients and families, and health care professionals.
To develop a detailed map (a ‘taxonomy’) of all possible types of care coordination, based on what currently happens and what patient and professional preferences are.
To calculate the costs of the types of coordinated care identified in the taxonomy.
To work closely with patients and families throughout the project and disseminate findings widely.
The CONCORD research team are doing 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 have established a patient advisory group to advise on recruiting participants and interpreting the findings. The advisory group is chaired by Lara Bloom (Ehlers-Danlos Society) and Kerry Leeson-Beevers (Alstrom Syndrome UK) who are also members of the research team.
We have already collected data via interviews, focus groups and a national survey. Due to the current situation, the workshops scheduled for May and June have been cancelled and we have put study recruitment on hold. We will be in touch soon.
On Wednesday 10 July 2019, 10:00 – 11:30, the CONCORD team held a webinar to discuss progress of the project so far, and how people can be involved in the coming months. You can watch the webinar here: