Patient data is medical information held about an individual patient.
It can include basic data such as the patient's name and date of birth and also more sensitive data such as treatment history, lifestyle choices, genetic data, and biometric data. In the NHS, patient data is held in individual patient records which can be accessed by various NHS providers. Private sector data, however, is held separately by private healthcare providers.
Currently, NHS Digital only collects data from Private Patient Units based in NHS Trusts, or from private hospitals providing NHS commissioned services. Private healthcare data is separately collected and held by the Private Healthcare Information Network (the PHIN), which is an independent non-profit organisation with legal powers to collect and process data of patients of private consultants and hospitals. This means that private healthcare data has historically not been included in many quality and safety reporting systems, and the two data-sets are not joined up.
The digitalisation of healthcare and patient data is a hot topic currently, with the Acute Data Alignment Programme (the ADAPt Programme) anticipated to have major implications for how patient data is shared across the entire UK healthcare sector, including independent healthcare providers. In this article, Victoria Robertson, a partner in our commercial and data team who specialises in healthcare, sets out what the private healthcare sector needs to consider following an ADAPt Programme report published in December 2022.
Why is private patient data collection in the spotlight?
There are a number of reasons why the Department for Health and Social Care (DHSC) is seeking the alignment of data standards and reporting across the private sector.
The healthcare sector has made huge progress in digital transformation during the COVID-19 pandemic, and the DHSC is keen that this progress continues, having stated that digitally mature providers are 10% more efficient than those who have progress to make in this area. Ensuring that all patient data - whether private or NHS - is captured and shared is an important part of the sector's digital journey.
The private sector worked closely with the NHS during the COVID-19 pandemic, with NHS England purchasing access to practically all the private hospital sector in a series of contracts between March 2020 to March 2021, so the sharing of patient data could also be seen as a logical next step to marry up the NHS and private sector.
The conviction of Ian Paterson, a breast surgeon who practiced at the Heart of England Foundation Trust and Spire Healthcare, for wounding with intent and unlawful wounding, highlighted the need for action to enable visibility of consultants' performance across both NHS and private practice, with the independent inquiry finding that he was able to perform harmful surgery because of a "culture of avoidance and denial" in a "dysfunctional" healthcare system.
The NHS is increasingly focussing upon the use of technology and is currently undergoing major reforms as part of its tech agenda. NHS Digital's merger with NHS England has been accelerated from March 2023 to January 2023, demonstrating the importance of the use of digitalisation and technology within the healthcare sector as a whole. This move will mean that for the first time there will be one single statutory body responsible for all data and digital technology across the NHS, with the Department for Health and Social Care (DHSC) stating that the proposed merger will mean a streamlined experience for patients, and that access to electronic patient records will be easier.
What is the ADAPt Programme?
The ADAPt Programme was jointly established by NHS Digital and PHIN with the aim of demonstrating the feasibility and benefits of making private patient data available to NHS systems. The programme was initiated at a meeting between Jeremy Hunt, the then Secretary of State for Health and Social Care, NHS Digital and PHIN on 9 January 2018, following the conviction of Mr Paterson for harming his patients. The Secretary of State asked that NHS Digital and PHIN work together to ensure that private healthcare data could be properly captured and analysed in NHS systems.
The ADAPt Programme's aims include:
- Ensuring that data describing both privately and NHS funded healthcare is visible in all healthcare records reporting systems to assist in monitoring the quality of service delivery and providing safe and effective care.
- Improving the information available to patients considering private healthcare by publishing performance measures by PHIN.
- Identifying opportunities to reduce the reporting and data collection burden upon private providers and NHS Trusts.
The ADAPt Programme's scope is private healthcare acute activity in England only, including APC activity (inpatient and day case) undertaken by independent providers, NHS PPUs and cosmetic surgery providers. Maternity services and non-surgical cosmetic interventions are out of scope.
The ADAPt Programme's governance board includes members from NHS Digital, PHIN and other key stakeholders such as the Care Quality Commission, NHS Resolution and the Independent Healthcare Providers Network. The ADAPt Programme started in May 2020 with the first phase being co-operation between the NHS and the private sector to seek system alignment for the direction of change and readiness for the next phases, and the second being the pilot phase being carried out during 2022. The next phase will be the alignment of secondary uses data flows to appropriate NHS bodies.
The aim of the pilot phases was to establish both that it is feasible for private providers to submit data directly to NHS Digital (which will be NHS England once the merger takes place) and that the PHIN can meet its statutory duties by receiving a feed of data from NHS Digital instead of directly from private providers. Private patient data was analysed to assess whether there were service delivery and patient care benefits in combining NHS and private healthcare data, whether that would reduce the reporting burden on NHS and private providers, and whether that information could be used for other matters such as supporting authorised research.
Whilst one of the three pilots has not been completed due to COVID-19 related pressures, the ADAPt Programme board has concluded that the next phase can still go ahead and a report was published in December 2022 with various recommendations for the next steps.
ADAPt Programme Report Recommendations
The ADAPt Programme report made a number of recommendations which will be of interest to the private healthcare sector, including that:
- DHSC should issue a direction to NHS Digital to require the collection of all private Admitted Patient Care and Outpatient Data, to take effect from 1 April 2024. This makes use of a new power to collect data from private healthcare providers which was granted under the Health and Social Care Act 2022.
- In the transition period until the direction takes effect, the sharing of private Admitted Patient Care data between NHS Digital and PHIN should continue, with independent healthcare providers continuing to submit patient data to PHIN. This interim period will give smaller providers time to develop technical capability, and to plan for potential cost increases.
- The legal basis for the interim sharing of data will need to be defined in collaboration with independent healthcare providers, and their support and agreement will be needed, especially as there is currently no binding direction requiring this sharing. The purpose for which the data will be used and the recognition of its inherent sensitivity will need to be taken into account. This will be a matter between NHS Digital and PHIN.
- All private healthcare providers should begin to collect patients' NHS numbers, dates of birth, postcodes and gender (person stated) as soon as practicable.
- NHS organisations will need to continue to make secondary submissions of their private activity data to PHIN pending a data sharing agreement between PHIN and NHS Digital.
The next steps recommended were planning for phase 3 of the ADAPt Programme, a public consultation on the plan for NHS Digital to hold, link and analyse private healthcare data, and engagement with the independent healthcare sector regarding plans for adoption.
What should independent healthcare providers do?
There is currently no binding direction applicable to the independent healthcare sector in relation to the ADAPt Programme, meaning that no additional reporting obligations currently apply, with independent providers retaining their current obligation to report to PHIN.
It is worth noting that the ADAPt Programme's scope is stated by NHS Digital to be APC Data only (Admitted Patient Care), but the recommendation of the report refers to a direction being made for the collection of Outpatient Data as well as APC Data. If Outpatient Data is to be in scope also then potentially much more data collection and reporting will be required from independent healthcare providers. It remains to be seen what the conclusion will be on this front.
Our recommendation is that independent healthcare providers start to collect the basic information recommended in the ADAPt Programme report for all patients whether admitted or outpatients – it is likely that patients' dates of birth, postcode and gender are already currently collected, with the additional piece of data to be collected being the patient's NHS number.
Once the recommendations have been considered further, independent providers will need to start reviewing their systems and software to ensure that data can easily be provided in the format to be required by NHS Digital (which will by that point be NHS England). It is not clear yet what format will be required for this data, and we suggest that independent healthcare providers engage with the ADAPt Programme over the coming months regarding the plans for adoption of the recommendations in the ADAPt report.
Our large specialist healthcare advisory team advises many independent healthcare providers upon issues concerning technology and patient data. For more information please contact Victoria Robertson.
