Good TREs work
Health Innovation Network - South London projects
108 data files in total were disseminated unsafely (information about files used safely is missing for TRE/"system access" projects).
Health Innovation Network (south London AHSN) application for DAE access — DARS-NIC-203509-L9P1P
Type of data: information not disclosed for TRE projects
Opt outs honoured: No - data flow is not identifiable, Anonymised - ICO Code Compliant (Does not include the flow of confidential data)
Legal basis: Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii), Health and Social Care Act 2012 s261(1) and s261(2)(b)(ii), Health and Social Care Act 2012 s261(2)(b)(ii)
Purposes: No (Academic Health Science Network (AHSN))
Sensitive: Non Sensitive, and Non-Sensitive
When:DSA runs 2019-12-23 — 2020-06-30 2018.10 — 2024.11.
Access method: System Access
(System access exclusively means data was not disseminated, but was accessed under supervision on NHS Digital's systems)
Data-controller type: GUY'S AND ST THOMAS' NHS FOUNDATION TRUST
Sublicensing allowed: No
Datasets:
- Hospital Episode Statistics Accident and Emergency
- Hospital Episode Statistics Admitted Patient Care
- Hospital Episode Statistics Critical Care
- Hospital Episode Statistics Outpatients
- Hospital Episode Statistics Accident and Emergency (HES A and E)
- Hospital Episode Statistics Admitted Patient Care (HES APC)
- Hospital Episode Statistics Critical Care (HES Critical Care)
- Hospital Episode Statistics Outpatients (HES OP)
Objectives:
There are currently 15 AHSNs in England. Each AHSN works within its own region alongside Sustainability and Transformation Partnerships to respond to local health priorities. Additionally, the 15 AHSNs also connect as a national Network to take what works locally and quickly spread it across large geographies.
An AHSN may be hosted by another organisation (eg a local Trust) or may exist as a legal entity in their own right. There are ‘hosted’ and ‘non-hosted’ AHSNs respectively.
England’s 15 Academic Health Science Networks (AHSNs) were set up by the NHS in 2013, with an initial 5 year licence and a remit to drive healthcare innovation and stimulate economic growth.
AHSNs are unique as they are the only health bodies that connect all sectors involved in health innovation – the NHS, social care, public health, higher education, third sector bodies and healthcare industry. By connecting people and organisations, they aim to identify and spread innovative ways to do things differently, better and cheaper.
England’s 15 Academic Health Science Networks (AHSNs) were set up by the NHS in 2013, with an initial 5 year licence and a remit to drive healthcare innovation and stimulate economic growth.
Each AHSN works within its own region alongside Sustainability and Transformation Partnerships to respond to local health priorities. Additionally, the 15 AHSNs also connect as a national network to take what works locally and quickly spread it across large geographies.
The 15 AHSNs also host regional Patient Safety Collaboratives, which are designed to improve the safety of patients, providing safety improvements across all healthcare settings to deliver quality improvements and better patient outcomes.
During their first licences the AHSNs have collectively introduced over 200 innovative systems, pathways, apps and processes within 11,000 locations, benefiting 6m people.
In addition to driving healthcare innovation and transformation, the AHSNs also stimulate economic growth and since 2013 have leveraged over £330m funding for the NHS and social care which has helped create more than 500 jobs.
In July 2017 the NHS announced that the 15 AHSNs will be relicensed from April 2018 with an enhanced remit to operate as the innovation arm of the NHS.
The AHSNs are currently working with NHS England, NHS Improvement, the Government’s Office for Life Sciences and other partners, to develop the priorities for the new licence. These are likely to focus on themes including digital innovation, patient safety, quality improvement / system transformation and MedTech.
For more about the AHSNs:
• For examples of the AHSNs’ innovation projects visit the Atlas of Solutions at atlas.ahsnnetwork.com
• For further background to the AHSNs visit www.ahsnnetwork.com
Guy’s and St Thomas’ (GSTT) NHS Foundation Trust hosts the South London AHSN. The AHSN was licensed for 5 years by NHS England in 2013 and NHS England have committed to licence the AHSN for a further 5 years. It covers a population of 3.5 million living in the 12 south London boroughs. The AHSN acts as a catalyst of change – identifying, adopting and spreading innovation across the health and care system in south London. The wider network includes a number of partner organisations which includes all NHS Acute and Community and Mental Health Trusts, CCGs and Universities across the region.
The AHSN exists to achieve the following four objectives (each of which is underpinned by supporting work in the following domains):
o Focus on the needs of patients and local populations – support and work in partnership with commissioners and public health bodies to identify and address unmet health and social care needs, whilst promoting health equality and best practice (Domain A).
o Speed up adoption of innovation into practice to improve clinical outcomes and patient experience – support the identification and more rapid uptake and spread of research evidence and innovation at pace and scale to improve patient care and local population health (Domain B).
o Build a culture of partnership and collaboration – promote inclusivity, partnership and collaboration to consider and address local, regional and national priorities (Domain C).
o Create wealth through co-development, testing, evaluation and early adoption and spread of new products and services (Domain D).
The AHSN requires Hospital Episodes Statistics (HES) data for use in Domain A, B and C. Data will only be used in support of these three areas, and specifically not for Domain D.
Below sets out the governance for access to HES data within an AHSN. Whilst each AHSN will have people performing the below roles, their individual job titles are likely to vary between the AHSNs.
• Project Lead – a person responsible for delivering a project on behalf of the AHSN
• Informatics Lead – a person employed to perform a specialist informatics/ data analysis function across a range of projects
• Head of Informatics – the person with oversight and overall responsibility for the delivery of the AHSNs informatics function
• Informatics team – the team within the AHSN responsible for informatics and data analysis, consisting of informatics leads and overseen by the Head of Informatics
• IG lead –Information Governance expert who is outside of the AHSN informatics team but is part of the decision making Board (ie specifically on decisions whether HES data will be used for projects)
Within each Domain there are projects undertaken focusing on different areas of health in the region. Each project has a Project Lead who coordinates and identifies what areas will be investigated or what hypotheses will be tested within a project. Examples of current themes include but are not limited to the following conditions:
• Healthy Ageing
• Diabetes
• Atrial Fibrillation
• Musculosketal
• Patient Safety
• Mental Health
The Project Lead may be employed by one of the partner organisations of the AHSN, but neither the project, members of the wider network, nor Project Lead have access to record level data – only aggregate data with small numbers suppressed in line with the HES analysis guide. The objectives of projects within the three domains for which the data will be used are directly in support of improving health care and benefiting health care users. Projects to be undertaken will be for the purposes of healthcare improvement and research only and no record level data will be accessed by any partner organisation(s) (commercial or otherwise) of the AHSN.
The Project Lead will liaise with the Informatics Lead (who are all substantive employees of the data controller) over their requirements. It is the Informatics Lead who considers what aggregate data requirements may be required for the project, and in turn supports the project’s request for analysis from the AHSN Informatics Team. Only the AHSN Informatics Team access the pseudonymised HES data to perform analyses and produce outputs to be supplied for use within the specific project. A Data Request document will be written and submitted to the AHSN Informatics Team. The AHSN Informatics Team would then consider the request based on the criteria outlined below and, if the request is approved by the HES access panel, the AHSN Informatics Team will schedule the work. No individual outside of the AHSN Informatics Team will be given access to the data other than in the form of outputs that are aggregated with small numbers suppressed in line with the HES Analysis Guide.
As each project is undertaken for the purposes of healthcare improvement and research only, each aggregated data request is only for the purposes of that project.
The AHSN Informatics Team comprises of employees of the data controller, and professionally is accountable through the data controller’s governance arrangements. No other individual will have access to the raw HES data.
The process will work as follows:
1. Project Lead completes Data Request Form and submits it to the AHSN Informatics Team via the Informatics Lead;
2. Data Request is reviewed by the AHSN Informatics Team giving consideration to the following assessment/approval criteria:
a. The appropriateness of the volume and scope of data required to produce the requested output(s) in terms of scientific approach and proportionality of expected benefit to health and/or social care;
b. The likely scientific value of the project and use of data;
c. The appropriateness of the data being used for the purpose of the project (including consideration of the expected benefits to healthcare)
d. The AHSN Informatics Team's capacity to deliver requested output(s) within the required timeframe;
4. With recommendations from the AHSN Informatics Team members, the final decision is made by the Head of Informatics, in conjunction with an IG Lead who works for our data controller, and our Medical Director or a member of the Executive team where the Medical Director is not available. They will ensure that the proposal is in line with the HES Data Sharing Agreement and any relevant local policies eg HES Use Policy
5. If a favourable decision is taken, the work is then scheduled according to priority and capacity.
The HES data will not be linked with any other data.
The Data Controller expects to use the HES data in support of over 20 projects per year, depending on AHSN, in support of the themed projects. For each project, the outputs will be tabulations containing only aggregated data with small numbers suppressed. Such anonymous data would be provided back to the project together with analytical commentary. Typically, projects will request further iterations of analyses to address follow up questions based on the initial findings.
The HES data will only be used for purposes relating to the provision of healthcare or the promotion of healthcare improvements in line with the requirements of the Health and Social Care Act 2012 as amended by the Care Act 2014.
The AHSN may undertake commissioned pieces of work where HES data may be used and where a charge is made for time only (not access to the data) on a cost recovery basis. This will only be undertaken where this commissioned work fits in with the AHSN purpose as outlined above and will not be undertaken where the work is outside the domains identified above. The process for approval as outlined above will be followed.
The following are examples of recent and current projects:
Diabetes foot health project
The AHSN are working with partners in south east London and Kent to reduce major and minor foot amputations and improve foot health for patients with diabetes. They are doing this by setting up new multi-disciplinary teams focused on foot health, setting up a diabetes foot health network, educating healthcare professionals around foot health management and changing referral pathways to ensure that patients at risk are seen by a multidisciplinary team within 24 hours. In order to monitor the impact that this new approach is having on patients with diabetes HES data is required to monitor the number of major and minor foot amputations being undertaken on patients with a diagnosis of diabetes as well as monitoring non-elective hospital admissions for foot problems amongst diabetes patients.
Reducing polypharmacy amongst older adults
The AHSN are working with south London partners to support polypharmacy reviews locally to encourage the deprescribing of multiple medications for vulnerable adults where it is safe to do so. We are drawing up example business cases to encourage CCGs to commission pharmacists to conduct these reviews. These business cases require information on non-elective admissions amongst the older people population in each of our CCG areas as well as the costs associated with these admissions in order to model how this work would help reduce non-elective admissions for older adults.
Falls prevention
The AHSN are interested in supporting our network to reduce falls amongst older people as a key priority of our healthy ageing theme. We are interested in conducting an analysis using HES data to understand the factors most common in those who are falling in order to build a better picture of who is falling and understanding the variation in falls rates between CCG areas and providers to highlight pockets of best practice. This analysis will help us to target falls prevention programmes.
Yielded Benefits:
Yielded Benefits cannot be evidenced as ongoing issues has prevented access to the data (March 2020).
Expected Benefits:
The objectives of the Programmes are to directly benefit health care through identifying best and inferior practice; standardising best practice to optimise care; improve the patient experience and patient outcomes and potentially delivering cost savings. Raising the standards at the hospitals with lower levels of performance or less effective practises will be of direct benefit to local residents and users.
Any improvements identified by the AHSN would be shared with other AHSNs across the country through the national forums for AHSNs.
The intention is to request continued access to NHS Digitals online portal to be used to help monitor the effectiveness of improvements and the success in reducing variation in order to maintain standards and support continuous improvement.
The outputs are used in a number of ways which benefit patients. Many of the HINs reports are for, and disseminated by, region-wide bodies, ensuring the greatest impact from the work undertaken .
1) Better services for patients. Providing solid, reliable and accurate data to support an understanding of current services and inform future service design. Reports have been used to inform both Commissioning and Provider organisations to support discussions on service need and potential areas for investment/development. This benefits patients by ensuring scarce resources are targeted most effectively and support the decisions on projects which demonstrate the most benefit to patients and the healthcare economy as a whole. It is difficult to quantify the effect of improved analysis in financial terms or on the outcome of decisions, as reports are used to enable informed decision making. This is why there is an insistence on capturing the link between the reports provided and the intended patient/service benefit which will be delivered by use of the information during the project scoping process.
2) Driving effective and efficient healthcare. Identifying areas for service improvement or areas affecting patient safety, ensuring patient activity and flows are understood, for example number of attendances or admissions, length of stay or readmissions for a particular condition or pathway. Where evidence is provided that a proposed initiative does not add value, this offers significant benefit to the healthcare economy by avoiding investment which does not demonstrate valuable improvements in patient care as well as identifying those that do. While these are not definitive measures of quality, understanding these factors for particular patient groups informs investment decisions.
3) Safer care. Evaluating the impact of service improvements on hospital activity, identifying risk factors relating to specific conditions (e.g. our catheter work to reduce catheter associated urinary tract infections) and providing evidence to support initiatives, for examples targeting higher risk patients.
4) Better management of data. Avoiding the unnecessary processing, movement and management of data – by utilising one existing source, rather than seeking data from multiple organisations for each project, significantly reduces the transmission and processing of data and allows for consistent processing. It also avoids the delay in producing the evidence for service improvement/effectiveness. Standardised, validated data leads to more accurate results enabling comparison between organisations and safe, region-wide aggregation.
Outputs:
The primary outputs from the work undertaken using the data within this agreement by the AHSN Informatics Team will be written reports containing tables of (aggregated) data with small numbers suppressed in line with the HES Analysis Guide with a commentary on findings. Some analyses inform decisions regarding whether projects or innovations will deliver the impact or meet the needs of an identified group of patients which is for internal use and not developed sufficiently to be published externally – for example understanding outpatient activity for long term conditions to feed in to Sustainability and Transformation Plans. However, where analysis results in a report that is appropriate to publish, these are made available via the AHSN website free of charge, with small numbers suppressed in line with the HES Analysis Guide and with the source identified as outlined in the Data Sharing Agreement.
All outputs will provide essential insight and understanding into whether innovations or projects will deliver the impact expected or will meet the needs of an identified group of patients. Outputs will provide insight into current delivery of healthcare or have the potential to improve delivery of health/social care and are not undertaken purely for intellectual purposes, gain credibility by association or for purely commercial gain or advantage. HES data will only be used where local data cannot provide the insight required in a practical way and will only be used to address the following issues:
• To provide a greater understanding of the demand for a service by a particular group or groups of patients to inform service design and investment decisions.
• To understand variations in aspects of a group of patients’ care, such as length of stay or readmission, to identify ‘what good looks like’, and where patient care may not be delivering to the desired level.
• To enable decisions to be made regarding where innovations may have the greatest impact on patient care and to monitor that impact e.g. reduced length of say, readmissions or admission to hospital.
• To provide assurance that services and systems are providing the quality of care on an ongoing basis.
Examples of how the outputs may be used include:
• A project focussing on a specific disease (eg Asthma and COPD project) would use the analysis to feedback to treatment centres or other service providers/commissioners the findings in relation to variations in practice and best practice in the region. The network would then work with those organisations to put in place specific processes aiming to reduce and further monitor variation.
• Analytical output from projects exploring a specific disease (e.g. Sepsis) will allow the Patient Safety Collaborative to understand the diagnosis and coding of patients with that disease and those at risk of the disease. This will be used to identify potential opportunities for improvement, and potentially monitor the impact of this improvement, in the healthcare provided for patients with this condition or at risk of the condition. The findings may be published formally and will be disseminated across other AHSNs with the intention that the work is used in other areas.
• Data analysis exploring service provision and utilisation across a region enables the production of a report outlining variation in care, including comparisons with other regions. Such reports highlight that for a number of reasons, intended and unintended, there are local and national variations in the way that healthcare is delivered for that group. This enables greater understanding of where best practice is undertaken and where there are opportunities for improvement and learning which can only be achieved by such analysis. In the longer term, repeated and further analysis can be undertaken to ensure that improvements resulting from this project are sustained.
• Analysis which provides an understanding of the demand for services and performance of organisations across a region will inform strategic planning across healthcare communities (eg Sustainability and Transformation Plans (STPs) and Accountable Care Organisations (ACOs) and groups of commissioners/providers working together in less formal arrangements) as well as identifying opportunities and potential beneficial impacts for specific innovations.
• AHSNs are unique in having a regional footprint and responsibility for innovation across and between health and social care communities, therefore an understanding of utilisation and demand relating to specific conditions or services is essential to inform decisions relating to programmes and projects. For example analysis that provides an understanding of the utilisation of outpatient clinics for long-term conditions will be key to inform local Sustainability and Transformation Plans – by understanding the extent of this activity they will be able to identify areas where (and then monitor the impact of) potential innovations which may provide alternatives to outpatient care, such as technologies that enable and support self-care.
Processing:
The NHS Digital Portal is a secure method giving access to datasets and associated analytical tools. It is accessed via a secure authentication method to named users. Users are only able to access the datasets detailed within this agreement. Users log onto the portal and are presented with analysis tools which allow them to access the relevant data sets and reference data tables so that they can return appropriate descriptions to the coded data.
The access and use of the system is fully auditable and all users must comply with the use of the data as specified in this agreement. Users are able to produce tabulations, aggregations, reports, charts, graphs and statistical outputs for viewing on screen. They may request these to be downloaded with small numbers supressed in line with the HES Analysis Guide.
The AHSN is hosted by Guy’s and St Thomas’ NHS Foundation Trust who is listed as the data controller in this application (and is referred to within this application as the “host organisation”). In practice this means that the AHSN is a department within the host organisation, operating within all host organisation’s policies and procedures for Information Governance, HR, Finance, Information Management & Technology, etc. All AHSN employees are substantively employed by the host organisation.
All employees involved in processing the data provided under this agreement are substantive employees of the host organisation and are subject to the same contractual obligations and security arrangements. The AHSN, including the AHSN Informatics Team, is considered by the host organisation as a department which sits within the Trust and utilises the Trust’s back office functions and information governance arrangements.
The data under this agreement will be stored on a secure server by NHS Digital. Queries will be produced using the SAS EG software at the data storage location stated within the application . The aggregated data extracts will be accessed by members of the AHSN Informatics Team, with access restricted to authorised personnel all of whom will be substantive employees of the host organisation and data will only be processed in that location. No data will be shared or transferred to other locations.
Once a project has been reviewed and approved to proceed by the AHSN, the AHSN Informatics Team will construct a query on the NHS Digital online portal (and subsequently received tabulated subset data) tailored towards the specific requirements of the project. This will always be the minimum amount of data required for the analysis. The subset is similarly stored on a secure server at the location specific within the host organisation, with access restricted to only authorised personnel working on the specific project. The AHSN Informatics Team will then undertake analysis of that bespoke extract according to the specific details of the project and will produce multiple tabulations containing only aggregated data with small numbers suppressed in line with the HES Analysis Guide.
Typically data will be broken down by hospital or CCG; patient age and sex, and by primary and secondary diagnoses. When using outpatient data, the data will typically be broken down by diagnosis codes or clinics; numbers of outpatients seen in clinics; number of outpatient appointments, and GP practices. For A&E, the data will typically be broken down by diagnostic codes; presentation codes; number of patients presenting; treatments or interventions in emergency departments; patient age; patient gender; number of patients admitted and number to each ward broken down by hospital and CCG and by GP practice.
The AHSN Informatics Team assess the tabulated data performing analysis of the variations between the factors and provide a narrative of findings. Outputs in the form of written reports including tables with narrative commentary are delivered to the lead and used in line with the original objective of the project. Follow up questions may be raised and/or further analyses may be requested.
NHS Digital will monitor use of the NHS Digital on-line portal as part of on-going access and any excessive or unauthorised use will be reviewed and access could be withdrawn with data destruction notices issued if that occurs. The organisation is only permitted to download tabulated data with small numbers from the system. Downloading of record level data and record level linkage is not permitted under this agreement.
Only Substantive employees of Guy’s and St Thomas NHS Foundation Trust will have access to the data.