NHS Digital Data Release Register - reformatted
Royal College of Physicians of London
Opt outs honoured: Y
Basis: Informed Patient consent to permit the receipt, processing and release of data by the HSCIC
Format: Anonymised - ICO code compliant Non Sensitive
How often: One-Off
When: unknown — 11/2016
HSCIC Id: DARS-NIC-387635-C9Y0W-v0.1
Data: Hospital Episode Statistics Admitted Patient Care
Data: MRIS - Cohort Event Notification Report
Data: MRIS - Cause of Death Report
Data: MRIS - Flagging Current Status Report
Data: MRIS - List Cleaning Report
Data: MRIS - Scottish NHS / Registration
Data: MRIS - List Cleaning Report
Data: MRIS - Flagging Current Status Report
Data: Hospital Episode Statistics Admitted Patient Care
Data: MRIS - Cause of Death Report
Data: MRIS - Scottish NHS / Registration
Data: MRIS - List Cleaning Report
Output: Following this analysis a summary of aggregated data findings (with small numbers suppressed in line with the HES Analysis Guide) will be sent to the project team at RCP who will consider the results in order to determine:
1. If all secondary identifiers were removed from the dataset, what proportion of records could the team expect to be able to identify re-fractures for?
2. Is the rate of return of point 1 sufficient in order to be able to achieve the clinical and scientific objectives of the project (specifically to be able to use re-fracture as an outcome measure for the project).
The decision will be taken by a multidisciplinary advisory group including clinicians, methodologists and two patient and carer representatives. The different organisations involved in the composition of this group is as follows; Royal College of General Practitioners, AGILE and Chartered Society of Physiotherapy, British Geriatrics Society, National Osteoporosis Society, British Society for Rheumatology, Society for Endocrinology, University of Bristol, British Orthopaedic Association, Royal College of Nursing, University of Oxford, National Osteoporosis Society, NHS Vale of York CCG.
Patient/ user involvement are integral to the project and are delivered in a number of ways:
1. Third sector
The National Osteoporosis Society (NOS) is the only charity and advocacy body for patients with osteoporosis in the UK and has recently produced UK criteria and standards for an effective FLS. There are two representatives of the NOS on the FLS-DB project advisory group. The advisory group has been and will be involved in all stages of the project and providing recommendations over all aspects of the audit. The NOS is also leading on a multiagency FLS implementation group that includes NHSE and PHE as well as this FLS-DB advisory group. The NOS is also leading a project to support the implementation of new FLSs across the UK; this is another important opportunity to both pilot this project's audit tools as well as inform dissemination and uptake of the audit. The NOS will provide advice on analyses for the report and its dissemination to maximise impact.
2. FLS champions
Through the NOS, the RCP share access to existing FLS through the champions group. Members of the group include healthcare professionals that share a specialist interest in FLS. It is not a requirement to have an FLS to become an FLS Champion: some members are actively engaged in FLS, while others may join the network to gain a greater understanding and insight into FLS.
This group meets three times a year and represents an important opportunity to test and develop the audit tools and research questions developed through the FLS-DB advisory group.
3. Patients/ carers
The RCP have two patients as members of our FLS-DB advisory group. One representative is a carer of an elderly relative who has sustained both hip and non-hip fragility fractures and the other has experience of caring for her mother (who was in a care home) and husband (who was in hospital) who suffered from falls. Therefore, both have direct experiences of the needs of patients at risk of fragility fractures.
Once the decision is taken, then notification of the findings will be communicated to the Confidentiality Advisory Group as part of the annual review. If the decision is taken to remove the secondary identifiers from the dataset, then the following activities will take place:
1. List cleaning files will be destroyed using proprietary file shredding software
2. Current dataset items will be converted to non-identifiable items (DOB to age; Postcode to Lower Super Output Area)
3. Identifiable data items (other than NHS number) will be destroyed using proprietary file shredding software
4. A new dataset will be deployed for prospective data collection.
Activities: The full cohort (size 18,000) will be submitted to NHS Digital containing NHS number, DOB, Surname, Forename, Gender and Postcode. The returned cleaned file will contain a study ID, with cleaned, updated data and match rank. These data will be used to inform decision making about the retention of secondary identifiers in the dataset.
The data files from list cleaning will be analysed by Crown Informatics to determine:
(a) What proportion of records were able to be matched on NHS number alone
(b) What proportion of records were unable to be matched on NHS number alone
(c) What were the characteristics of records that were unable to be matched on NHS number alone
(d) Were there any geographic patterns in the records that failed to be matched
(e) What was the proportion of match ranks of records that failed to be matched on NHS number alone.
Identifiable data will only be processed by Crown Informatics Ltd. The RCP will only have access to aggregated data. Patient names will only be used to verify NHS number and will then be destroyed. In addition, all identifiable data supplied to Crown Informatics Ltd will only be used for the purposes of determining the feasibility of removing secondary identifiers from the audit dataset and will be destroyed at the end of this agreement.
The identifiers supplied to NHS Digital are from hospital submission so are available to them also. The data received back from list cleaning will not need to be passed back to hospitals.
The data returned from NHS Digital will not be linked to any other data sets (e.g. Fracture Liaison Service Database).
Objective: The Fracture Liaison Service Database (FLS-DB) is a clinically led, web-based quality improvement initiative commissioned by the Healthcare Quality Improvement Partnership (HQIP) and managed by the Royal College of Physicians (RCP). The database is designed as the platform for a national clinical audit which aims to establish whether services are providing assessment and treatment for osteoporosis after a fragility fracture by measuring against key standards from the National Osteoporosis Society (NOS) and the National Institute for Health and Care Excellence (NICE)
NHS number and additional secondary identifiers (name, DOB, postcode) are captured as part of the project dataset in order to track patients who have presented with a further fracture - either at the same service as their initial presentation or at another service nationwide - this is a key outcome measure of the project.
The RCP has agreed with the Confidentiality Advisory Group (CAG) that they will consider the adequacy of NHS number alone as a means of determining secondary presentations of the same patient - the RCP are therefore requesting list cleaning of a cohort so that they can judge whether secondary identifiers need to remain part of the audit dataset. Removing secondary identifiers from the dataset will reduce the number of identifiers being held under the auspices of the RCP’s CAG approval and consideration of this is a condition of the CAG approval.
Benefits: The overall aims of the project are to improve the quality of care for patients who present to fracture liaison services with a fragility fracture by measuring adherence to evidence based standards of care in the area of falls and fracture prevention. This is an ongoing initiative being delivered as part of a national clinical audit programme - currently commissioned until 2018.
Patients who have a fragility fracture are a high risk of sustaining further fractures which have major implications for morbidity and mortality. Fracture Liaison Services (FLS) are services which aim to identify patients who have has a fragility fracture and provide treatment for osteoporosis and further falls risk. The FLS-DB is a national clinical audit which measures performance against standards for FLS nationwide and through feedback of performance data (published reports and online reporting) and sharing of best practice, aims to improve the quality of these services.
As part of the RCP’s commitment to CAG, they wish to determine whether the current dataset (which contains NHS number, name, DOB and postcode) is required in its entirety to be able to track patients for future fractures.
If this list cleaning allows the RCP to determine that secondary identifiers are superfluous, then they will be able to reduce the exposure of sensitive data collected by the project.
Source: NHS Digital.