The full UK ROC dataset represents the inpatient rehabilitation subset of the Long-term Neurological Conditions dataset.
Overview of the key items in the dataset
|
Parameter
|
Measurement Tools
|
|
Unit identifier
|
Unit name, code
Designated service level (Level 1a,b,c; Level 2a,b)
|
|
Patient demographics
|
Age, date of birth, gender, ethnicity, diagnosis, date of onset
|
|
Commissioning
|
GP, Integrated care board
|
|
Response times and processing
|
Source of referral
Dates of referral, assessment admission discharge
|
|
Admission details
|
Admitted from, programme of care,
Length of stay,
Interruptions of care (No. days, reason)
|
|
Discharge details
|
Discharge date (anticipated and actual),
Delayed discharges: No. days, reason
Discharge destination
|
|
Episode cost
|
Occupied bed days, weighted bed days
Total cost
|
|
Collected at admission and discharge*
|
|
Needs for rehabilitation
|
The Rehabilitation Complexity Scale (RCS-E)
The Patient Categorisation Tool (PCAT)
|
|
Inputs provided to meet those needs
|
The Northwick Park nursing Dependency Scale (NPDS)
The Northwick Park therapy Dependency assessment (NPTDA)
|
|
Outcomes
Gains in independence
Reduction of care needs
Individual goal achievement
Wider participation
|
The UK Functional Assessment Measure (UK FIM+FAM)
The Northwick Park Care Needs Assessment (NPCNA)
Goal Attainment Scaling
The Mayo Portland Adaptability Inventory
|
|
Cost efficiency
|
The time taken to offset the initial costs of rehabilitation by reduction in the cost of ongoing care needs, as estimated by the Northwick Park Care Needs Assessment
|
*For more information on each of the above tools, click on the tool name
More information
Software
The UK ROC software that contains collates measures of need, input and outcome is built on Microsoft Excel and is freely available from the UK ROC team: Contact LNWH-tr.ukroc@nhs.net
In England, rehabilitation services are provided at a number of different levels according to the complexity of need:
- The majority of patients will make a satisfactory recovery from illness or injury with the assistance of their local general (Level 3) services.
- Patients with more complex needs may require treatment in their local (secondary) specialist (Level 2) rehabilitation service.
- A small number of patients with highly complex needs, beyond the scope of their local services may require rehabilitation in a tertiary (Level 1) service.
The British Society of Physical and Rehabilitation Medicine has provided a detailed description of the different levels of service and their definitions (Specialist neuro-rehabilitation services: providing for patients with complex rehabilitation needs 2015)
|
Level 1 services are further subdivided into:
|
Level 2 services are further subdivided into:
|
|
1a – High physical dependency
1b – Mixed disability
1c - Cognitive behavioural
|
2a – Supra district services
2b - Local district services
|
Between 2013 and 2023:
From April 2024 onwards:
- Commissioning of specialist rehabilitation is being devolved to the local Integrated Care Boards (ICBs).
- NHS England remains responsible for the service specification and for ensuring that patients with complex needs receive the specialised services they require.
- Over time, service specifications are likely to become more outcomes-focused.
Contracting and commissioning currency
The basis for contracting and commissioning is also changing.
- Activity based payments through national tariffs are being replaced by block contracts using Aligned Payment and Incentive Agreements (APIA).
- Future contracts will be negotiated locally and based on local service costs obtained from patient level costing (PLICS), rather than national prices.
PLICS systems for rehabilitation are still in development.
- In the meantime, UK ROC provides the only source of patient level costing information and activity on which such contracts could be based.
- Data collection and analysis will become even more essential to support commissioning of services in the new local networks and integrated pathway systems.
To support transition, NHSE/I have continued to publish prices and currencies for 2023-25.
Joining UK ROC and submitting data
- Units aspiring to obtain the Level 1 or 2 status submit a psuedonymised export from the database at the end of each month.
- The UK ROC team will ask you to complete a Service Profile form before sending you a copy of the data collection software and a user guide.
- Data collection can start immediately after registration.
For more information on how to submit data, submission deadlines and reporting information please contact the UK ROC team.
Please email us to register your unit.
Tool manuals and training
Manuals and training resources can be found on the web-pages for each of the tools.
A manual for use of the UK ROC software is available.
UK ROC runs regular courses on use of the various tools and data entry:
Email LNWH-tr.ukroc@nhs.net for details
Weighted bed day currency and calculation of tariffs
For more information on the weighted bed day currency, see the following:
For further information about the training programme please contact:
Email: LNWH-tr.ukroc@nhs.net
Phone: +44(0)-208-869-5161
Registry status
During the NIHR-funded phase of its development, UK ROC collected only de-identified data.
Since it was commissioned by NHSE to provide the national commissioning dataset, UK ROC was mandated to provide identifiable patient level activity data to flow through to the Data Service for Commissioners Regional Offices (DSCROs) for contract and performance monitoring of the various service providers.
In addition, patients with complex disability following severe illness or injury form a vulnerable group of people for whom services are scarce. Clinical care can easily become fragmented as patients move between services (often over a wide geographical area) – and some patients literally get lost in the system.
UK ROC therefore required permission to collect and hold the NHS number for three different purposes - clinical, commissioning and audit.
Working with NHS Digital, NHS England, the Health Research Authority and the Caldicott Guardians for all of the individual services who report data to UK ROC, the relevant permissions have been obtained to collect the NHS number for these three purposes.
Since April 2017, UK ROC collates identifiable patient data, including the NHS number, for all but four of the Level 1/2 services. This information can be used to track individual patients for clinical purposes.
Prolonged Disorders of consciousness (PDOC) registry
The National clinical guidelines for Prolonged Disorders of Consciousness 2020 recommended creation of a registry of patients in PDOC.
From 2023/4, the UK ROC database will include the national PDOC Registry.
The purposes of the registry are:
- To provide data on the prevalence and outcomes from PDOC.
- To determine the extent to which assessment and ongoing surveillance of consciousness is happening in accordance with the guidelines.
- To confirm that best interests decision-making and reviews are taking place in accordance with the law.
- Where decisions are made with withdraw further life-sustaining treatment, these are made responsibly and in accordance with the national guidelines.
Data linkage with other national datasets
Data linkage using the NHS number for the purpose of clinical audit requires permission from the Health Research Authority Clinical Advisory Group (HRA-CAG) under Section 251.
So far this has been obtained for one major national project – the National Clinical Audit for Specialist Rehabilitation following major Injury (NCASRI), which linked UK ROC data with that from the Trauma Audit and Research Network (TARN) to determine whether patients who required ongoing specialist inpatient rehabilitation on leaving the major trauma centres were able to access the services they required.
Future data linkage with other acute datasets will require separate s251 permissions.
UK ROC is an important source of health service research in rehabilitation.
For publications on the development and validation of individual measure tools please see the relevant tools pages.
Some key publications from the UK ROC programme are as follows:
- Cost efficiency of rehabilitation
Turner-Stokes L, Williams H, Bill A, Bassett P, Sephton K. Cost-efficiency of specialist inpatient rehabilitation for working-aged adults with complex neurological disabilities: A multicentre cohort analysis of a national clinical dataset BMJ Open 2016 Feb 24;6(2):e010238. doi: 10.1136/bmjopen-2015-010238
Turner-Stokes L, Bavikatte G, Williams H, Bill A, Sephton K. Cost-efficiency of specialist hyperacute in-patient rehabilitation services for medically unstable patients with complex rehabilitation needs: a prospective cohort analysis. BMJ Open. 2016 Sep 8;6(9):e012112. doi: 10.1136/bmjopen-2016-012112.
Turner-Stokes L, Dzingina M, Shavelle R, Bill A, Williams H, Sephton K Estimated life-time savings in the cost of on-going care following specialist rehabilitation for severe traumatic brain injury in the UK. Journal of Head Trauma Rehabilitation. doi:10.1097/HTR.0000000000000473. PMID: 30801440
Turner-Stokes L, Harding R, Peihan Y, Dzingina M, Wei G Cost-efficiency of specialist inpatient rehabilitation for adults with multiple sclerosis: A multicentre prospective cohort analysis of a national clinical dataset Multiple Sclerosis Journal – Experimental, Translational and Clinical. 2020 Mar 16;6(1):2055217320912789. doi: 10.1177/2055217320912789. eCollection 2020 Jan-Mar.
Turner-Stokes L, LeFeuillee G, Francis R, Nayar M, Nair N. Functional outcomes and cost-efficiency of specialist in-patient rehabilitation following spinal cord injury: A multi-centre national cohort analysis from the UK Rehabilitation Outcomes Collaborative (UK ROC) Disability and Rehabilitation. 2021 Jul 20;1-9. doi: 10.1080/09638288.2021.1946603.
Turner-Stokes L, Rose H, Knight A, Williams H, Siegert RJ, Ashford SA. Prolonged disorders of consciousness: identification using the UK FIM + FAM and cohort analysis of outcomes from a UK national clinical database. Disabil Rehabil. 2022 Feb 15:1-10. doi: 10.1080/09638288.2022.2037754. Epub ahead of print. PMID: 35166637
- Using the tools in clinical practice
Turner-Stokes L, Williams H, Sephton K, Rose H, Harris S, Thu A. Engaging the hearts and minds of clinicians in outcome measurement – the UK Rehabilitation Outcomes Collaborative approach. Disability and Rehabilitation. 2012: 34(22); 1871-9
Singh R, Sinha S, Bill A, Turner-Stokes L. Unmet need for specialised rehabilitation following neurosurgery: can we maximise the potential cost–benefits? Brit J Neurosurg 2017; 31(2):249-253. doi: 10.1080/02688697.2016.1233318
Turner-Stokes L, Poppleton R, Williams H, Schoewenaars K, Badwan, D. Using the UK ROC dataset to make the case for resources to improve cost-efficiency in neurological rehabilitation. Disability and Rehabilitation 2012: 34(22); 1900-6