Acute Data Alignment Programme (ADAPt) public consultation

The ADAPt public consultation ran from 19 February 2020 to 22 May 2020 on the NHS Digital consultation hub. The consultation sought feedback on proposals to change the way in which private healthcare data is collected, processed, reported and disseminated, specifically proposing that information about private healthcare Admitted Patient Care (APC) activity be reported to NHS Digital alongside information about NHS funded patients, using common data standards. The consultation proposed three pilots:

1. Piloting the flow of private healthcare APC data from the Private Healthcare Information Network (PHIN) to NHS Digital.
2. Piloting the flow of private healthcare APC data collected from NHS Private Patient Units (PPUs) by NHS Digital to PHIN.
3. Piloting the supply to PHIN of private APC data from independent providers to NHS Digital.

The consultation was public, seeking feedback from key stakeholder groups, providers, clinicians and members of the public. A copy of the consultation document is at Annex 1.

Thirty responses from across the stakeholder spectrum, including private providers, NHS PPU, national bodies, professional bodies and representative organisations as well as individuals.

The responses to the consultation were broadly positive and supportive of the changes envisaged by the programme and the associated pilot activity, in fact no response was wholly against the proposal. Comments are broken down into a number of broad themes below; followed by a question by question breakdown, impact and required action from the programme and next steps.

Whilst some concerns were raised within the consultation responses, detailed below, these were principally with areas beyond the scope of the planned pilots. It is recommended that the Board approve the move to pilot activity, whilst supporting the programme to respond to stakeholders on the concerns raised as required.

The consultation was published on the NHS Digital consultation hub and communicated to stakeholder groups. Initially the consultation was scheduled to run from 19 February 2020 for 6 weeks; however with the need for many stakeholders to act to deal with the 2020 COVID-19 pandemic the Board took the decision to extend the consultation until 22 May 2020. 

During the consultation run, responses were monitored with additional communication with stakeholders to encourage responses. In total thirty responses to the consultation were received, from across the stakeholder spectrum.

Responses were received from:

Organisations

• Association of Anaesthetists
• Association of British Insurers
• BAUS
• BMA
• Bupa Insurance Ltd
• Federation of Independent Practitioner Organisations (FIPO)
• Federation of Surgical Specialist Associations
• General Medical Council
• GIRFT(Getting It Right First Time) programme
• GIRFT/NCIP
• HDR-UK Health Data Hub (incorporating comments from a patient roundtable) 
• Independent Healthcare Providers Network
• Institute of Cancer Research
• NHS Resolution
• Professional Record Standards Body
• The Private Patients’ Forum
• The Royal College of Nursing
• Royal Pharmaceutical Society
• UK Biobank
• Use My Data

Providers

• Bournemouth Private Clinic/Royal Bournemouth Hospital
• Cleveland Clinic London
• Epsomedical
• KIMS Hospital Limited
• Spire Healthcare
• University Hospitals Bristol NHS Foundation Trust
• Western Sussex Hospitals NHS Foundation Trust

Other

• Consultant in both NHS and private hospitals
• Doctor
• Full-time private consultant
• NHS data expert (but purely on personal basis)
• Member of the public

The ADAPt responses were supportive of the aims, objectives and proposed approach of the programme and the pilot activities.

The vision for a standardised single source of healthcare information, with common standards across the two sectors was widely endorsed with the recognition that care pathways cross not just organisational boundaries but sector boundaries and therefore flow of data needs to be unified; and until this capability exists (along with equality in approach on granularity of reporting) the ability to have a complete, unified view of patient care to inform decisions and support improvement.

More broadly the need to align private and NHS data was noted by respondents, a prime driver for the ADAPt programme. Many respondents noted not just the broad benefit of such alignment but further detailed use cases and how such aligned data could help to improve both clinical outcomes and quality of care.

As an example response, the General Medical Council noted their support for consultation, stating:

A summary of the responses are grouped below in themes; with a full review of the consultation by question in subsequent sections. 

1. Paterson

The timing of the consultation was such that it aligned closely with the outcome of the Paterson inquiry (published February 2020), with parallels between the ADAPt Programme and inquiry recommendations drawn, especially concerning the role that ADAPt can play in providing a comprehensive view of consultant whole-practice data; outcome and performance data for the first time covering both private and NHS care available at consultant level. It is noted that PHIN, NHSD and GIRFT have investigated how the organisations can work together more closely to support the inquiry outcomes, and how ADAPt can be further tailored to ensure the inquiry outcomes are more explicitly met.

2. Revalidation

Many responses identified the advantage of a data collection which included whole practice data and the importance of this for clinical revalidation and appraisals. With clinicians often practicing across NHS Trusts and potentially holding practice privileges with a number of private providers the need for a single source of data was widely recognised. Respondents further noted that transparent information sharing would facilitate better regulation by CQC professional regulators and bodies that are charge with revalidating registered professionals.

3. Transparency

A unified data collection, it was reported by respondents, would provide over time a powerful tool on outcomes, providing a prime resource for patients, the public and clinicians themselves, helping to enhance clinical outcomes and improve quality. The support for this approach was found across all respondent groups, noting that only once the outcomes of ADAPt had been achieved would “we be able to ensure that patient safety is effectively being monitored and effective service improvement can be undertaken.”

4. Research

Many respondents noted the benefit of greater whole-population analysis by incorporating private data alongside NHS activity, allowing improved insight into population usage of health services and health outcomes; a more complete healthcare overview across and between differing sectors and providers and full case ascertainment for epidemiological studies.

Whilst the responses were largely supportive, some concerns were raised. Whilst none were identified as significant barriers to commencing the ADAPt pilot activity, they must be acknowledged and consideration given to them in later phases of the  programme. The concerns have been grouped into themes below. 

1. Differences in terminology and coding

There have been historical differences between terminology and coding used between NHS and private providers. These are now largely aligned; with all providers submitting data to PHIN as OCDS. The NHS is transitioning to SNOMED CT. There are differing approaches to resolving any remaining coding issues (e.g. supporting adoption with mapping as an interim). The ADAPt programme will take into consideration coding for pilot activity and subsequent recommendations, with support identified where required.

2. Governance and data sharing

Some concern over IG and data sharing were raised by respondents. Both PHIN and NHSD operate under strict legal basis and data sharing agreements. Directions, DPIA and DPN will be in place for any changes to data collections or data sharing between the organisations. The consultation noted that for pilot activity data sharing would be between providers involved in the pilots, PHIN and NHSD only.

3.  Attribution of NHS records to NHS consultants

PHIN data collections are reported at hospital and consultant level, whilst the majority of NHS collections are at Trust level only. This is principally due to the differences in how care is delivered between private and NHS healthcare; however comparability of data between the two sectors would require improved recording and granularity within NHS data collections. 

4. Need to retain ability of consultants to validate their own data

Linked to 3 above; whereas NHS data collections are validated and signed off at Trust level (albeit often with preceding validation at a service level), PHIN data is additionally validated at consultant level. The ability to maintain consultant level validation in future data collections is recognised and will need to be carefully considered for activity beyond pilot phases of the ADAPt programme. 

5. NHS numbers and overseas patients

Aligning data collections between NHSD and PHIN effectively would require common identifiers for patients. Within England (and Wales) this is the NHS Number, and is available for use by private providers. The difficulty comes for overseas patients in the private sector who would not currently be given an NHS number. NHS patients can simply opt out of aspects of data sharing, an approach which was available for non-English residents is required.

6. Cost and Burden – implementation, access to NHS IT and training

It is recognised by the ADAPt programme that there may be an impact on cost and burden to providers both in delivering the pilots and subsequent recommendations. The programme has stated, and intends, to undertake pilot activities with those who currently have capabilities in place to submit data to NHSD. Burden will be minimised by the programme recommendations, and support and guidance for any subsequent implementation and access to NHS IT infrastructure provided. It is noted that during the response to COVID-19 many private providers submitted data to SUS, either through securing HSCN connectivity, or through XML middleware providers.

7.  UK wide data collection

PHIN under the CMA Order have a legal basis for UK wide data collection. The NHS in the UK is devolved; NHSD remit is England only, although under direction for the Devolved Administrations may collect data on their behalf (an approach which has been utilised during the response to COVID-19). It is noted that the pilot activity will be England only.