Acute Data Alignment Programme (ADAPt) Discovery Direction requirement specification

Historically private healthcare provider data have not been included in many national quality and safety reporting systems. This has meant that care delivered in the private healthcare sector could not be adequately or equally assessed against the same information standards and measurements used in the NHS.

Systematic failures of patient safety in the NHS and private sector have recently been reported by the Independent Inquiry into the Issues raised by Paterson and the Independent Medicines and Medical Devices Safety Review.

NHS Digital and the Private Healthcare Information Network (PHIN) support the creation of a single repository of the whole practice of consultants across England as recommended by the Paterson Inquiry. Such a repository will need to be underpinned by common standards to record and report activity, quality and risk in a consistent way across both private and NHS care in order to reduce the risks to patient safety.

Most privately funded healthcare is provided to patients who receive the majority of their care from the NHS. A significant number of doctors have both NHS and private practice. There is therefore a clear need for increased transparency and common standards to better support clinical safety, regulation and patient choice.

The Acute Data Alignment Programme (ADAPt), initiated in 2018, is jointly led by NHS Digital and PHIN with support from the Department of Health and Social Care (DHSC), NHS Improvement (NHSI), NHS England (NHSE), the Care Quality Commission (CQC) and other observer bodies. Our collective vision is:

“To bring about an alignment in data standards, measurement and reporting systems across NHS and private healthcare in order to enable greater transparency in quality and safety and to support patient choice and opportunities for improving patient care.”

To support the objectives of the ADAPt Programme NHS Digital will collect and process an extract of private healthcare admitted patient care (APC) data from PHIN for a set of private healthcare providers participating in the pilot. This will include personal and confidential information and will be processed in line with Data Protection Legislation and the Caldicott Principles.

The piloting will help inform the future strategic direction of private healthcare information flows.

Scope 

The scope of these Directions is the collection of Private Healthcare APC activity data from Private Healthcare Information Network (PHIN) for organisations participating within the ADAPt pilot(s).

The ADAPt Discovery data collection will include the reporting of data relating to recent activity and comprise, in total, no more than 24 consecutive months for any individual participating organisation.

The scope of the data collection is England only. For discovery purposes data collection relating to activity from outside of England including in Devolved Administrations of the UK, that is Wales, Scotland, Northern Ireland, or the Isle of Man or Channel Islands should NOT be included.

Data collection

The reporting of private healthcare data will be requested from PHIN in relation to the following

• private Healthcare APC Data (see Appendix 1 for data specification), from providers who have agreed to participate in the pilot

This will include collection of the following

• Patient identifiers
• patient demographic details - age, gender and ethnicity
• private healthcare organisation details
• clinician details - General Medical Council (GMC) number 

Clinical activity details

• admission/discharge details
• diagnoses
• procedures b
• Body Mass Index (BMI)
• ASA Classification Score (health index)

The full technical data set specification is available in Appendix 1.

NHS Digital will collect this data via a secure strategic mechanism such as Messaging Exchange for Social Care (MESH) or AWS S3 bucket.

Data will be processed by the Data Processing Service (DPS) and made available to analysts as appropriate (via the role-based access controls) within Data Access Environment (DAE) analysis platform.

Legal restrictions must be applied to the processing of Private Healthcare APC data including the exclusion of patient information relating to In vitro fertilisation (IVF) and gender recognition where this information can identify the data subject:

• NHS Digital MUST NOT collect personal information about legally restricted terms relating to In Vitro Fertilisation (IVF) or Gender Recognition in line with the restrictions imposed by the Human Fertilisation and Embryology Act 1990 as amended by the Human Fertilisation and Embryology Act 2008 or the Gender Recognition Act 2004
• in order to comply with the above Acts, any submitted records containing procedure codes relating to IVF or Gender reassignment MUST be anonymised at source, with all patient identifiers removed, prior to submission to NHS Digital
• yo align with Secondary Uses Service (SUS) submission rules the latest anonymous and legally restricted codes should be applied
• NHS Digital will anonymise on receipt any records containing procedure codes relating to IVF or Gender reassignment which it inadvertently receives

This data that originates from organisations participating within the ADAPt pilot will be collected from the Private Healthcare Information Network (PHIN). This comprises private healthcare activity data which PHIN collects from private healthcare providers to meet the requirements of the CMA Private Healthcare Investigation Order 2014 (as amended).

This information will originate within local systems or be available within patient clinical notes within the private healthcare provider

The data collection comprises confidential patient information – this includes both personal data for example NHS Number, Date of Birth, Postcode and special category data relating to the patient’s health e.g. diagnoses, procedures, BMI, ASA Classification etc.

It also includes the personal details (GMC Number) of the Clinician(s) who were responsible for the activity, which would constitute personal data.

For the purposes of the pilot NHS Digital will collect the data from PHIN as a single initial submission, with a subsequent refresh if required.

Internal processing

NHS Digital will analyse the data collected under the Directions, including by such reference or linkage to other data held by NHS Digital as NHS Digital determines is necessary and appropriate to achieve the Purpose set out in the Directions.

Data will have been validated upon collection by PHIN so further validation will not be required, however analysis of data quality will be conducted. NHS Digital will derive a variety of new data items based upon the submitted data where appropriate including calculations and reference data look-ups for example. length of stay or geographical attributes such as Lower Layer Super Output Area (LLSOA) or Local Authority.

The information will be analysed to assess

• whether there are service delivery and patient care benefits in combining NHS and private healthcare data
• whether such collection could support a reduction in the reporting burden on NHS and private providers
• the feasibility of such information to meet a variety of other use cases, for example, derivation of performance metrics, the requirements of healthcare regulators and supporting authorised research

The pilot will establish whether key stakeholder scenarios could be met if private healthcare data was routinely collected and processed by NHS Digital and made available to customers via the Data Access Request Service (DARS).

The Directions enable NHS Digital to undertake linkage of the information collected with other data it holds, where required, to examine possible use cases and potential benefits of combining NHS funded and private patient APC data within NHS systems. For example, the linkage may be to Hospital Episode Statistics (HES) Admitted Patient Care (APC) and Mortality data.

Data will be processed through the NHS Digital Master Patient Service (MPS) and/or Personal Demographics Service (PDS) to confirm the patient’s identity and to verify the patient’s NHS Number, where available, to support unique patient identification and data linkage.

Initial consultation, as required by section 258 of the Health and Social Care Act 2012, has been completed by NHS Digital including

• the issuing organisation: Department for Health and Social Care (on behalf of the Secretary of State for Health and Social Care)
• representatives of those who are likely to use the information collected: Care Quality Commission (CQC), NHS Resolution, NHS X, NHS England and Improvement, National Clinical Improvement Programme (NCIP)/Getting it Right First Time (GIRFT)
• representatives of those from whom the information will be collected: Private Healthcare Information Network (PHIN), Private Healthcare Providers, Independent Healthcare Providers Network (IHPN)
• any other person it is appropriate to consult: In addition to continued engagement with the stakeholders above, a full public consultation exercise on the proposal was conducted via NHS Digital Consultation Hub (Citizen Space)
• patients and the public
• clinicians
• research organisation

Details of the consultation are available. 

NHS Digital may disseminate under section 261(1) of the 2012 Act the information it has obtained by complying with these Directions to the following organisations only to support the Purpose of these Directions

• PHIN
• NHS England
• NHS Improvement
• Care Quality Commission
• National Clinical Improvement Programme (NCIP)/Getting It Right First Time (GIRFT) programme

The information disseminated will be anonymous aggregated data.

NHS Digital will NOT disseminate any confidential private healthcare patient information during the pilot and is directed NOT to exercise its powers under section 261(1) and (4) other than to disseminate to the organisations set out above.

National data opt-outs will not apply as there will be no dissemination of confidential patient information by NHS Digital during the pilot.

NHS Digital is directed NOT to publish the information that is obtained by complying with these Directions for the duration of the pilot

It is expected that NHS Digital will utilise its existing strategic toolset to meet this requirement wherever possible.

This requirements specification will be subject to formal change control.

Any changes to this specification will be formally agreed by NHS Digital and Department for Health and Social Care following consultation in line with s258(1) Health and Social Care Act 2012.

For further information about this specification please email [email protected].