The HIU has led development of professional standards for the structure and content of patient records for over 10 years, culminating in publication in 2013 of the AoMRC standards. Since then the focus has been on developing these professional standards further so that information can be carried in a computable format from hospitals to general practices and incorporated into the patient record without entering the data again (in other words, enabling interoperability).
This has meant developing detailed information models, which express cardinality and other business rules, values including relevant code sets (SNOMED CT), and the relationship between different sections and data fields.
Development of standards
We always include patients, carers and front line clinicians in the development of the standards to ensure that they are meaningful and reflect the needs of patients and those delivering care. The high-level models were easy for a general audience to follow, but the detailed information models were not. So, the challenge has been to get a general audience engaged with the information models, without having to lose either some important detail or confuse the audience with technical jargon.
To do this we have been adapting the methods used to develop professional record standards. For example, to illustrate the relationship between headings and the record entries within a heading, we have used mindmaps – a pictorial representation, which people have found easy to follow.
The challenge has been to get a general audience engaged with the information models, without having to lose either some important detail or confuse the audience with technical jargon.
We have clearly defined the terms ‘mandatory’ and ‘optional’, as mandatory items can be tested technically as they require information to be present in every message. We have further defined within ‘optional’ a ‘required’ category, where it is professional good practice to record and communicate information, where relevant, to the individual patient. For example, information on medications cannot be mandatory, as medications may not have been changed during a hospital stay. But where there are changes, it is professional good practice to record the details.
Clinical scenarios
As detailed information models cannot be represented as a simple list of headings, we are creating detailed clinical scenarios (patient stories) from which we produce example discharge summaries, setting out the content as defined in the information models. A general audience can read the patient’s story and look at a mock up of a discharge summary. They can then provide comments on the terms used for the headings, data fields, etc, identify any missing items and comment on any items that they would have difficulty either in completing in hospital, or receiving in general practice.
The detailed information models are also made available for system vendors and other health informaticians to review online in NHS Digital (formally the Health and Social Care Information Centre) Clinical Knowledge Manager (CKM) software as OpenEHR models. Example discharge summaries based on these models are provided online for patients and care professionals to review.
Implementation guidance
Implementation guidance – which describes processes and rules which cannot be represented in information models – is also provided for all audiences. The guidance is a Word document, which is available to those with an interest to review. It is easily comprehensible to a general audience and it is particularly important as it expresses good practice in recording or receiving data, where patient and professional views are vital.
As we develop the methods, we are bringing together technical teams with patient and care professionals throughout the definition of the computable standards, which we hope will ensure patient and professional leadership, combined with the technical precision needed for computable solutions.
Jan Hoogewerf, programme manager, Health Informatics Unit