The UK Rehabilitation Outcome Collaborative (UKROC) Database

Transcription

1 The UK Rehabilitation Outcome Collaborative (UKROC) Database September 2016 Further information and advice may be obtained from: Professor Lynne Turner-Stokes DM FRCP Regional Hyper acute Rehabilitation Unit, Northwick Park Hospital, Watford Road, Harrow, Middlesex. HA1 3UJ Tel: +44 (0) ; Fax: +44 (0) Or from: Ms Heather Williams, Senior Research fellow Mr Keith Sephton, UKROC database manager UK Rehabilitation Outcomes Collaborative (UKROC) Northwick Park Hospital address as above Tel: +44 (0) ; Tel: +44 (0) ; 1

2 UKROC database for specialist rehabilitation Background The UK specialist Rehabilitation Outcomes Collaborative (UKROC) was originally set up through a Department of Health NIHR Programme Grant to develop a national database for collating case episode for inpatient rehabilitation. It is now commissioned by NHSE to provide the commissioning dataset for all specialist neurorehabilitation services (levels 1 and 2) across England. The database development was undertaken in collaboration with the British Society of Rehabilitation Medicine (BSRM) and the Australasian Rehabilitation Outcome Centre (AROC). UKROC provides monthly activity reports and quarterly benchmarking reports It provides costing information on casemix and treatment costs which is updated annually to inform the development an updating of complexity-weighted tariffs It will serves to open the black box of rehabilitation by providing information on rehabilitation requirements, the inputs provided to meet them, outcomes and cost-benefits of rehabilitation for patients with different levels of need UKROC is directed by Professor Lynne Turner-Stokes, and based at Northwick Park Hospital in London. Definition of specialist service levels in England Specialist rehabilitation is currently provided in three main levels: Level 1: Specialised (tertiary) rehabilitation services o serving a catchment population > 1 million population, and carrying a high proportion of complex cases and reporting the full clinical dataset to the UKROC database. o these are designated by NHSE Level 2: Local specialist rehabilitation services o serving a population of 250K 1 million, carrying a lower proportion of complex cases, and reporting at least the minimum clinical dataset to the UKROC database. Level 3: Non-specialist rehabilitation services o serving a local population (usually <500K) led by therapists or non-rm consultants. o Level 3a services are local services which specialise in certain conditions and include a significant component of rehabilitation (for example stroke, or care of the elderly). They are led / supported by consultants in specialties other than Rehabilitation Medicine (e.g. neurology / stroke medicine) and may act as a local source of expertise, even though they do not meet the full standards for a specialist rehabilitation service. o Level 3b services are non-medically led services for example in intermediate care settings Tertiary (level 1) specialised rehabilitation services are thinly spread and, in some areas of the UK where access is poor, local specialist rehabilitation services have extended to support a supra-district catchment of 750K or more, and take a proportion of patients with very complex needs. These are Level 2a services. Currently Level1 and 2a services are directly commissioned by NHSE, while Level 2b and 3 services are commissioned locally by CCGs The key difference between level 1 and 2 services is the proportion of complex patients, but there is considerable variation between services. Because each level of service carries a range of patients at different levels of complexity at any one time, the best way to define costs is by a weighted tariff based on patient complexity, as opposed to fixed tariffs for different levels of service. The specialist rehabilitation services are commissioned using a mandated complexity-weighted bed day currency. The currency applies a multiple level tariff that changes over time according to the complexity of the patient s needs. The payment model is based on serial complexity ratings using the agreed measures of complexity and outcome as defined through the UKROC dataset. Units must be registered with UKROC and report serial data to demonstrate that they are able to provide inputs commensurate with patient needs. Indicative tariffs are published but are not yet mandated they are still subject to local negotiation. 2

3 Service designation and data reporting Specialised rehabilitation services are designated by NHS England and the Clinical Commissioning Groups (CCGs). The BSRM has published criteria to assist in the process of designation of level 1 and 2 services. Since April 2013 UKROC provides the NHSE commissioning dataset for specialist rehabilitation. Registration and data reporting to the UKROC database are mandated requirements, so any unit with ambitions to be designated a Level 1 or 2 service must be reporting the mandated UKROC dataset. Reporting requirements are as follows: Service level Level 1 Level 2a Level 2b Reporting requirements The full UKROC dataset, including the UK FIM±FAM The full UKROC dataset, including the UK FIM±FAM At least the minimum UKROC dataset Any units that are not registered and reporting at least the minimum dataset are only able to qualify for level 3 status. The UKROC dataset (see Appendix 1) The UKROC database records three types of data: 1. Rehabilitation needs documenting the individual requirements for rehabilitation. 2. Input documenting the services actually provided to meet those needs so that unmet needs can be identified and also the reasons for variance can be recorded. 3. Outcomes the gains that are made during rehabilitation 4. Cost-efficiency the time to offset the cost of rehabilitation by savings in ongoing care. The full UKROC dataset represents the inpatient rehabilitation subset of the Long Term neurological Conditions dataset. It comprises 30 items of demographic and process data for each admitted case episode together with: The Rehabilitation Complexity Scale (RCS-E) (as a measure of rehabilitation needs) At least one of an agreed set of outcome measures which include o Full dataset - The UK FIM ± FAM o Minimum dataset - Barthel index (Wade and Collin Manual 1988) The Northwick Park Dependency Scale and Care Needs Assessment to derive cost-efficiency Itemised outcome scores are recorded at admission and discharge as illustrated below Complexity of need Needs / Input tools NPDS NPTDA RCS Outcome measures UKFIM±FAM (GAS) Level 1: Complex specialised rehabilitation services (CSRS) Catchment population >1 million RCS RCS Patients requiring rehabilitation UKFIM±FAM (GAS) Minimum Barthel Index Level 2: Specialist rehabilitation services (SRS) 2a Supra-district services 2b - Local district services Level 3: Non-specialist rehabilitation services (NSRS) 3a Other specialist services eg stroke units 3b - Generic rehab services 3

4 Data handling Dedicated software (based on Microsoft Excel) has been developed to support local data collection. Units are strongly advised to use this software which includes validated fields, algorithms and useful charting functions (such as the FAM-splat) The software includes patient identifiable fields for local use. When the data are exported for transfer to the UKROC database, they are pseudonymised so that the central UKROC database does not include patient-identifiable data. Tools and Training The UKROC dataset tools and software are provided free of charge to units who submit their data to the UKROC database Training courses in use of the various outcome measures and software are provided through the UKROC centre at Northwick Park. Ethics / R&D permissions The original development was set up as a service evaluation which does not require Research Ethics permission. UKROC is now commissioned by NHSE to provide the dataset and reporting is a mandated requirement of commissioning. Until recently UKROC has collated only de-identified data. However, we are now going through a process of gaining the relevant approvals from the Caldicott guardians to collect identifiable data for clinical and commissioning purposes, and approval from the Heath Research Authority for data linkages Further information The database support team will be happy to assist with any queries regarding the database or its associated tools Services wishing to find out more about how to contribute to this programme should contact Heather Williams at Northwick Park: heather.williams4@nhs.net or Tel Programme lead: Prof Lynne Turner-Stokes DM FRCP. Regional Rehabilitation Unit, Northwick Park Hospital lynne.turner-stokes@nhs.net Tel

5 Appendix 1: UKROC dataset for specialist neuro-rehabilitation Items Service Level (actual or aspired) Notes 1* 2a* 2b* 2b Other * using weighted bed day tariff Patient Identification & Demographics Patient Name for local use only Date of Birth for age calculations & data linkage Gender Ethnicity desirable if available Local Identifier for local use Hospital Number for local use NHS Number for future data linkage Commissioning & Referral Funding Source (NHS England, CCG, private etc) Service Level (1, 2a, 2b, 3) if commissioned at several levels Patient Category (a, b, c, d) CCG name or code GP Practice name, code and/or postcode???? may be required by commissioners GP name and/or code???? may be required by commissioners Patient postcode optional, though useful if available Referral date Referral source Date of decision (added to active waiting list) Date fit for admission Initial Assessment Date of initial assessment Assessed by (uni/multi-disciplinary) Diagnosis Onset date (original and/or current) Diagnosis category/subcategory ICD 10 codes optional Admission Details Date of admission Proposed discharge date Proposed trimpoint date Admitted from Admission purpose Interruptions & Extensions Interruptions (start & end date, reason) Extension date Discharge Details Date fit for discharge Discharge date Reason for delay Discharge mode Discharge destination Discharge postcode optional, though useful if available Admission & Discharge Assessments (all assessments should be submitted with fully itemised scores) Patient Categorisation Tool (on admission) complexity measure RCS-E version 13 scored retrospectively complexity measure FIM+FAM (including NIS) outcome measure NPDS-H (used to demonstrate cost efficiency) outcome measure Barthel or FIM+FAM or FIM or NPDS-H/NPCNA outcome measure Mayo-Portland Adaptability Inventory (MPAI-4) new in software version 16 Fortnightly Assessments (scored retrospectively for all patients throughout the year based on what was provided) RCS-E version 13 complexity/inputs measure Cross-Sectional Data Tranches (all assessments should be scored retrospectively based on what was actually provided) Collected fortnightly for ALL patients until at least 100 sets of matching assessments have been completed Matching RCS-E, NPDS-H/NPCNA & NPTDA complexity/inputs measures RCS-E version 13 complexity/inputs measure Data Submission Frequency Monthly (including all current inpatients) Optional no requirement to participate ideally submitted monthly or quarterly Other (submitted annually and following any significant changes to service) Service Profile including staffing levels and costs level 2b services are strongly encouraged to submit these items even though they are not currently mandatory. 5

6 Appendix 2: Key facts and Frequently asked questions How will data be used? UKROC provides the commissioning database for Level 1 and 2 services commissioned by NHS England. Activity data are used to calculate the mandated weighted bed-day currency in NHSE contracts for Level 1 and 2a services. They should also be used by CCGs to commission Level 2b services. Service profiles, response times and outcome data are reported quarterly for national benchmarking to improve service quality and cost-efficiency Which services should report data to UKROC? Only units that are reporting UKROC data will are eligible for designation as Level 1 or 2 services, qualifying for a specialist tariff. Payment on the weighted bed day tariff system is dependent on data submission as only activity reported through UKROC is eligible. Units not reporting data are eligible only for payment as level 3 services. UKROC operates an open door other services such as slowstream rehabilitation or Level 3 services are welcome to use the software and report their data What is the difference between a currency and a tariff A currency is the way the payment is made and the tariff is the actual price attached. Although the weighted bed day currency is mandated, the published tariffs are indicative only at the current time, which means that they may be subject to local negotiation. Tariffs and commissioning are based on historical data, so even though the tariff is not mandated the UKROC data will help providers and commissioners to agree a fair price. How were these particular measures agreed? The minimum dataset was originally developed as the specialist rehabilitation element of the then NHS Information Centre s Long Term Conditions Dataset. The measures were selected through an extensive process of national consultation and consensus and were approved by the Research and Clinical Standards Committee of the British Society of Rehabilitation Medicine. Can units collect additional or alternative data? To provide comparable data, it is essential that all units collect the same minimum dataset. Additional data can of course be collected for local use - for example, a wider range of outcome measures. The UKROC dataset now includes a range of optional measures including fields to record goals and Goal Attainment Scaling (GAS), and the Mayo Portland Adaptability Inventory (MPAI-4) Is ethical approval required? No. We have confirmed with the National Research Ethics Service that data collation is categorised as service evaluation, not requiring research ethics approval. Should the NHS number be used as the unique identifier? The NHS number should be used internally. Currently only de-identified data are used for the central collation, but we are in the process of obtaining the relevant permissions to record the NHS number for clinical and commissioning purposes, as well as to link the data with other key datasets Do patients need to consent? Patient consent is not required to collect de-identified data for clinical and commissioning purposes. Because many patients in specialist rehabilitation lack the capacity to consent, we are seeking the relevant permissions to share identified data with opt-out consent only. Provider units are requested to display a poster informing patients about the use of the data and how it will be stored/handled. Experience to date demonstrates that over a 10 year period, not a single patient objected. When asked, the majority expressed surprise that such data were not collected already. Do I have to pay for the tools or software? No the tools are available free to those who submit their data 6

7 The UKROC centre has developed specialist software based on Microsoft Excel. Providing that you have a license for Excel, the dedicated software is available free Can the software be integrated into our hospital IT system? At the moment we are asking people to enter the data on the dedicated software. This is because the tools contain algorithms and it is appropriate to keep the algorithms on the one central set of software. Experience has demonstrated that when Trusts try to embed the tools in their own dataset, they do not collect fully itemised data correctly, and it does not import to UKROC. This means that even thought clinical staff on the ground may be collecting the tools correctly, the full data are not reported and this can affect income. What about non-neurological patients? The UKROC Dataset was designed for application to neurological patients, but evidence now suggests that it is equally applicable for non-neurological patients. Further information The database support team will be happy to assist with any queries regarding the database or its associated tools. Contact details are as follows: Contact Issues Contact details UKROC Team General Enquiries LNWH-tr.ukroc@nhs.net Senior Research Fellow Heather Williams Database manager Keith Sephton Programme Lead Prof Lynne Turner-Stokes For copies of the tools or software, or to find out more about how to contribute to the database For questions about IT / software integration For questions about the programme design, tariffs or service designation, or about the principles of outcome measurement heather.williams4@nhs.net or Tel k.sephton@nhs.net or tel: lynne.turner-stokes@nhs.net Tel