NHS Continuing Healthcare Patient Level Data Set Direction requirements specification

NHS Continuing Healthcare means a package of ongoing care that is arranged and funded solely by the NHS where the individual has been assessed and found to have a ‘primary health need’ as set out in the National Framework for NHS Continuing Health Care and NHS funded Nursing Care (the CHC Framework). Such care is provided to an individual aged 18 or over, to meet health and associated social care needs that have arisen as a result of disability, accident or illness, as defined by the CHC Framework.

The purpose of the NHS Continuing Healthcare Directions 2022 is to enable NHS Digital to collect NHS CHC data to support the NHS Continuing Healthcare Strategic Improvement Programme (the CHC Strategic Improvement Programme), which aims to provide better outcomes for the patient. This new data set will address the limitations of the current CHC activity collection, which is a quarterly, aggregated collection currently submitted by each Clinical Commissioning Group (CCG)/Integrated Care Board (ICB).

NHS CHC data will flow as a patient-level data set which will cover all aspects of CHC services funded by the NHS in England; and includes NHS funded nursing care as defined in the CHC Framework. The NHS CHC PLDS will be an end-to-end data set covering initial checklist all the way through the assessment process to the commissioning and monitoring of individual care packages, including any requests for local review of an eligibility decision. This data set supports the aims of the CHC Strategic Improvement Programme to deliver:

1. better outcomes
2. better experience
3. better use of resources by offering better value for patients, the population and the taxpayer. For example, the enhanced data will show where patients are being placed out of area, where care packages are being changed frequently, and other evidence which may indicate poor outcomes for the patient, allowing this to be identified and addressed.

The dataset will be monitoring, where patients are going through local appeals processes and will highlight how quickly these are resolved and highlight CCGs/ICBs where high numbers of eligibility decisions are being overturned on appeal. The dataset will be able to be linked to other patient-level datasets subject to an appropriate legal basis, so increased/reduced hospital admissions, medication and other important attributes are visible.

The dataset is supported by the CHC Information Standard (DCB3085 Amd 51/2019), which aims to

1. develop  
2. bring online and
3. run as a monthly data collection a patient-level data set which will cover many aspects of CHC and NHS funded-nursing care

Scope

Patients: in scope 

All activities relating to adults (age 18 years and over) accessing NHS Continuing Healthcare and NHS funded nursing care (as defined in the as defined in the CHC Framework), funded solely by the NHS in England.

Patients: out of scope

All activities relating to adults (age 18 years and over) accessing Continuing Health Care funded solely or partly by Local Authorities are not in scope of this standard. Children’s Continuing Healthcare is also out of scope.

Professionals 

The standard primarily, but not exclusively, applies to the following professionals facilitating the data collection.

• CCG’s/ICBs management personnel (data collecting management)
• administrative personnel (data collectors)
• information and IT Professionals (information and electronic systems)

IT systems

The standard predominantly, but not exclusively, relates to systems designed to support CHC services, such as CHC Electronic Management Systems (EMS).

The NHS Continuing Healthcare Patient Level Data Set will be provided by all CCGs/ICBs that commission NHS funded CHC service provision in England. The project will work with the CHC Community and CHC system supplier so that CCGs/ICBs will be able to produce a patient level upload (likely in XML file format) from their local CHC database and securely upload it to NHS Digital’s collection platform.

The NHS CHC PLDS is an end to end, patient level data set that captures data relating to

Patient details

NHS Number, date of birth, address, postcode, gender, sexual orientation, ethnicity, religious or other beliefs, date of birth

Referral, assessment and outcome of the CHC services 

Referral Request or Notification Date, Referral type, Referral Source, Referring Agency and Professional, CHC Checklist completion date, Patient Location, Referral or Notification Outcome, Referral Discounted Reason and Date, Decision Tool Completion Date, Commissioner Eligibility Decision Date, Outcome and Decision sent to Patient date, Request Received to Commissioner Date, Activity type (referral or notification), Local Resolution Meeting Date [Formal/ Informal], Commissioner Review Outcome, Local Resolution (Start and End Date), Local Resolution Decision sent to Patient Date, Funding Start and End Date, Local Resolution Eligibility Start Date, Date Eligibility Begin following independent Review, PUPOC8 Decision Made Date, PUPOC Decision Outcome, CCG eligibility Decision (PUPOC) Sent to Requestor Date.

[A PUPoC (Previously Unassessed Periods of Care) case is a retrospective or backdated assessment for previously unassessed Continuing Health Care (CHC) which can date back to 1 April 2012.

Care package

Care Package Start Date, End Date. Personal Health Budget Type Code, Organisation Identifier, Care Provider Organisation Name, Post Code, Cost Code, Subjective Code, Care Product Type Code, Contract Unit Cost, Contract Unit Frequency, Commissioned Weekly Hours of Care

Review of CHC services

Review Type Code, Review Date, Review Outcome (Care package and Eligibility) Eligibility Status Change Date, Planned Review Date.

1. In accordance with the Information Standard, DCB3085 Amd 51/2019, from 1 April 2022 all CCGs/ICBs commissioning NHS CHC services MUST be able to collect the information locally that they intend to use to produce the monthly CHC data set v1.0 extract, as defined in the Technical Output Specification (TOS).
2. From 1 May 2022 all CCGs/ICBs commissioning NHS CHC services in scope of this Information Standard MUST begin ongoing monthly CHC Data Set submissions as per the instructions in the CHC data set v1.0 User Guidance.
3. Collection Window: There will be a month-long period of ‘single’ submission allowing time for the CCGs/ICBs to upload quality data once.

Internal processing

Processing of data is key in turning raw data into understandable intelligence on all aspects of performance, patient care and efficiency relating to NHS CHC. An overview of the processes that will follow collection of the NHS CHC PLDS are

1. The data set will be received into NHS Digital in identifiable form and linked with identifiable funding of care package data. The output produced will be anonymised in line with the ICO Anonymisation Code of Practice.
2. 1. NHS Digital will carry out various processing on the patient level data to complete a pseudonymisation process so the data remains patient level (so it can be linked to other datasets if there is a legal basis to do so) but in de- identified form.

Data quality

All data items are extracted from CHC management systems. CCGs/ICBs are responsible for ensuring the accuracy of the data, which is necessary for them to be able to provide NHS CHC assessment and provision of services.

NHS Digital will monitor the data quality of fields against the Specification and other demographic data. Where incorrect data is found this will be provided back to the submitting CCGs/ICBs as part of a data quality report, highlighting the errors.

Data linkage

Intended linkages are for the derivations of Master Patient Service (MPS) ID and Registered GP using the Patient Demographic Service (PDS) and geographies using corporate reference data.

There is potential for CHC data to be linked to other data obtained by NHS Digital under other directions made under section 254 of the 2012 Act, which could provide richer information, enable enhancement of existing publications and the development of new publications. If there is a proposal to link CHC data with other data that NHS Digital has obtained, this Specification will be reviewed in line with the change control process to ensure the linkage is aligned with the NHS Continuing Healthcare Directions 2022.

Where the linkage is approved, this Specification will be updated. More information about the data sets and collections that NHS Digital holds and that may be used for linkage can be found on the NHS Digital data sets and data collections.  

The dataset will allow monitoring of patients going through local appeals processes to ensure these are resolved quickly and inform CCGs/ICBs where high numbers of eligibility decisions are being overturned on appeal. Subject to approval through DARS, the data will be shared with NHS England to facilitate their analytical work, which may include better understanding of increased/reduced hospital admissions, and other important attributes of patient care.

Consultation with Stakeholders, carried out so far is as follows:

1. All Clinical Commissioning Groups (191 CCGs)
2. All Commissioning Support Units (CSUs)
3. Yorkshire & Humber Network (CCG CHC leads and NHS England regional staff from Yorkshire and Humber)
4. Digital CHC
5. Bray Leino (Suppliers of BroadCare system, which is the most widely used CHC management system)
6. Local authorities (England)
7. Department of Health and Social Care
8. NHS England and NHS Improvement
9. ADASS (Association of Directors of Adult Social Services) England
10. CHC SIP Public, Patient and Third Sector Collaboratives (includes members of the public and around 15 third sector organisations)

The legal basis for the collection of the data is the NHS CHC PLDS Direction. Information has been produced for patients in relation to the NHS CHC PLDS to ensure fair processing by making patients aware of the data set and their right to request opt out from their data being disseminated by NHS Digital. This includes an updated consent form relating to the sharing of information with relatives.

NHS CHC PLDS is not a clinical dataset relating to patient treatment, but one relating to the finance packages associated with patient care and support provided under the NHS Continuing Healthcare funding or NHS funded nursing care.

Stakeholders will be kept informed of progress via established communication channels, when required. These include:

• CHC monthly stakeholder e-newsletter (sent to CHC Improvement Collaborative, ADASS, CHC SIP Public, Patient and Third Sector Collaborative)
• digital CHC weekly e-newsletter
• monthly CHC improvement collaborative WebEx
• ad hoc jointly planned webinars by NHS England and NHS Digital with CCGs and system suppliers
• emails and responding to queries received by individual's CCGs or system suppliers

Regular Dissemination/Sharing

Data quality reports will be provided to CCGs/ICBs, by NHS Digital on the data they have submitted, highlighting the errors. This will allow CCGs/ICBs to review the data quality and resubmit the data.

Data Access Request Service (DARS)

Requests for data from the NHS CHC PLDS will be managed through the Data Access Request Service (DARS) with oversight from the Advisory Group for Data (AGD) where appropriate. This may include applications made by Arm’s Length Bodies, NHS-funded CHC service providers and commissioners and the third sector community organisations, to support research and innovation and to understand the impact of CHC on patient outcomes and experiences.

Where applicants have an appropriate legal basis and, subject to a successful DARS application, personal data may be linked with other data held by NHS Digital.

Subject to approval by DARS, data that has been anonymised in accordance with the Information Commissioners Office’s (ICO) Anonymisation Code of Practice will be disseminated to the National Commissioning Data Repository (NCDR), which is a web- based application developed by Arden and Gem CSU on behalf of NHS England,  where the data will be analysed by NHS England named analysts. This data will also be disseminated to NHS England’s CHC Business Unit, CHC Strategic Improvement Programme where the data is required to support their legal function and carry out their roles effectively. NHS England intend to use the data they receive for internal analysis purposes including updating the CHC dashboard and producing various assurance outputs

Data to be published

NHS Digital has a duty to publish information obtained as a result of complying with the Directions in accordance with section 260 of the 2012 Act. However, it is intended that NHS England will publish NHS CHC PLDS information and therefore NHS Digital will not publish the same data as that published by NHS England unless instructed by NHS England to do so.

Data prohibited from being published

NHS Digital is directed not to publish the NHS CHC PLDS information that NHS England will publish unless instructed by NHS England to publish that information.

The project will work with the NHS CHC Community and NHS CHC system suppliers so that CCGs/ICBs will be able to produce a patient level upload (in XML file format) from their local CHC database and securely upload it to NHS Digital’s collection platform.

Any changes to this Specification will be managed by NHS Digital in accordance with a written instruction from an appropriately senior person at NHS England to ensure a change is within scope of the NHS Continuing Healthcare Directions 2022. Such changes may also be subject to approval by the DAPB (Data Alliance Partnership Board).