To ask Her Majesty's Government whether, in order to provide accurate epidemiological data of specific conditions, they will (1) require general practitioners to use READ codes on patient records and add a scaled severity level of the condition(s) concerned, and (2) develop an overarching code for rarer conditions in conjunction with the Royal College of General Practitioners and relevant patient groups.
The department's Information Strategy The Power of Information: Putting all of us in Control of the Health and Care Information we Need, highlighted the importance of high quality data and consistent coding of clinical data. READ codes however, do not allow the level of detail most appropriate to the recording of specific and rare conditions. The department is therefore seeking to move the National Health Service to systematized nomenclature of medicine clinical terms (SNOMED CT), adapted to fit all necessary uses, as the single coherent terminology. Unlike READ codes, SNOMED CT includes a standard technical mechanism for the scaled or ranked documentation of condition severity (for example, allowing each patient's condition to be judged and further specified as mild, moderate or severe). The UK Terminology Centre (UKTC), which maintains SNOMED CT, is also engaged with the department's "Consultation on the United Kingdom Plan for Rare Diseases" which includes consideration of coding, documentation and record-keeping requirements.
The department will take an approach to the adoption of information standards that builds clinical and professional buy-in into the process and promotes adoption by the market, so that the systems and solutions that can be procured and used across health and care already have national standards built in. The department will therefore engage with relevant professional, patient and industry organisations.