Principles

Building data standards for adult social care:

As part of the continued development of data standards for DiSC, the programme aims to engage academic, life science, industry and public sector data users and providers, as part of wider consultation that seeks to address standards that are ‘fit for purpose’ across the social care system.

In conjunction with Care data matters: a roadmap for better data for adult social care we propose the following general principles in the development of standards for social care that include:

1. Improving outcomes for people receiving care

2. Facilitating information sharing across health and social care

3. Supporting carers and professionals in the provision of care

4. Promoting equality and equity of access to care

5. Improving population health outcomes

6. Enabling and increasing personal control

7. Ensuring accountability for data

8. Protecting against harm

In addition, we propose the following technical principles to guide the development of standardised metadata that includes:

1. Evidencing: metadata should only be endorsed and developed where there is a corresponding user need and a user story associated

2. Iterating: standards will be developed and distributed iteratively with the expectation that initial iterations will be “acceptable MVP” rather than perfect

3. Consulting: metadata should be developed in a consultation with relevant stakeholders across the social care system

4. Standardising:  whenever possible metadata should be developed in line with existing standards:

   1. NHS Data Dictionary

   2. LGA Inform

   3. SNOMED CT

   4. UK CORE HL7 FHIR Profiles

5. Naming: metadata "titles" will be capitalised in their human readable form for ease of reading and lowercase, underscore separated within technical schemata.

6. Prioritising: metadata development, endorsement and publication will be based on Impact vs Effort