The rare disease quality standard project aims to produce a set of quality statements for rare disease, which we hope will then be used by relevant authorities across the four nations as the basis for a quality standard for rare disease.
What is a Quality Standard?
A Quality Standard is defined by the National Institute of Health and Care Excellence (NICE) as a “a set of specific, concise statements which act as markers of high-quality, cost-effective care across a pathway or a clinical area.” They cover a specific pathway or clinical area and are based on the best available evidence.
They are produced by NICE and can be used by commissioners, service providers, practitioners, partner organisations and charities. They can be referred to by partner organisations who want to follow a consistent approach when defining, measuring and delivering high quality care.
Quality Standards aren’t mandatory, but they support the development and improvement of health and care.
Why do we need a Quality Standard for Rare Disease?
A Quality Standard for Rare Disease will drive improvements in care, address existing gaps in nation specific action plans, and establish clear actions for commissioners and healthcare providers.
Currently, there are no real measures to demonstrate progress over time, in addressing issues that we know really matter to people living with a rare disease. Quality standards have been shown to improve care by demonstrating what good looks like, and they provide measures that can be audited to show how individual services are performing.
This call is particularly timely, because of the increasing pressures on NHS services across the UK. When staff time is limited, and waiting lists are high, it is easier for rarer and more complex conditions to be overlooked. A quality standard for rare disease is vital to ensure that there is an incentive to focus on rarer diseases, and to prevent the gap in outcomes between common and rarer conditions continuing to grow.
How the project started:
- A group of interested parties from the Rare Diseases Forum came together and became the first IAG of the Forum in 2022.
- After gathering expressions of support from across the academic and research
community, we secured a meeting with NICE’s Chief Medical Officer in September
2023, who agreed that a quality standard for rare disease would be worth pursuing. - Following this, in December 2023, a project group and steering group came together, to develop a set of quality statements for rare disease.
Our goals
We want to establish, through collaboration across the rare disease community, a set of statements which clearly set out what high-quality, sustainable care, treatment and management look like for rare diseases.
What will the results look like?
We will develop a clear set of statements, which will be used by relevant authorities (e.g. the National Institute for Health and Care Excellence – NICE), to drive improvements in rare disease care and treatment. These statements will be developed from the experiences and input of patients, carers, healthcare professionals, policymakers and patient organisations, to ensure that they best reflect the needs of the community, and the most effective solutions to some of the issues this community faces.
To find out more about the current status of the project, please go to https://rarediseaseqs.org/