Thames Valley Trauma Rehabilitation Network
Information Requirements
This document focuses upon the information requirements for the network (i.e. not clinically).
It draws on ideas already documented in other documents, and these are simply summarised;
the documents are available. It concludes that the network will need to ensure full registration
of every patient with an International Severity Scale score of nine or more, which will requite
training of Emergency Department staff and a registration system open at all times. Then it will
need accurate current data on:
 input: bodily areas injured, severity, level of consciousness
 structure: skills/clinical services available (updated yearly), occupied capacity (real-time);
 process: patient pathways (times and dates of transfers), delays,
 outcome: either a postal/telephone questionnaire or a simple set of five questions.
The computerised database will need to adapt quickly in the first few years as it becomes
obvious what does and what does not work.
1.0
INTRODUCTION.
Improving clinical services depends entirely upon have accurate information about
current performance. Without knowing how a service is performing in terms of process
and outcome, one cannot make rational decisions on the changes needed. And if one
does not know accurately what services are available, it is even more difficult to plan
changes that make best use of available resources.
1.1
The challenge of having appropriate information in a timely manner has not really been
met satisfactorily by healthcare services at all, with some minor exceptions. But the
power of good information is demonstrated by, for example, the improvement in
maternity services arising from confidential enquiries in maternal deaths.
1.2
The particular challenge facing the Trauma Networks can be summarised thus. The
patients seen will have a huge range of different types and severities of injury, and they
will start with a huge range of contextual strengths and weaknesses. They need acute
services sometimes for weeks and months. They will pass from service to service,
hospital to hospital, and also on to Social Services and other Statutory and nonstatutory organisations. They will need time to recover and convalesce, and most will
additionally need rehabilitation which is a process that starts immediately and
continues in parallel with other services throughout. In one way or another, well over
50% of the healthcare system will have active involvement with some trauma patients
as they recover.
1.3
One additional challenge is the conceptual framework or model used by healthcare
systems. Increasingly services focus on a small part of a patient’s overall problems,
assuming that another service will take responsibility for other problems. Specifically
the system assumes that rehabilitation is an activity that only occurs (or should only
occur) in specialised, particular rehabilitation services that are considered a sequential
part of a patient’s pathway. In reality rehabilitation should be integrated into every
part of a patient’s pathway and, to an extent it is.
TVRN – information and data requirements.
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1.4
The second additional challenge faced is the reality that there is insufficient
rehabilitation resource available, both in terms of quality and quantity, to meet the
needs of people after trauma, let alone all the other people who would benefit from it.
1.5
In this context the Trauma Network could have a huge beneficial impact upon the
delivery of rehabilitation to people after trauma. This will happen if appropriate
information is collected and is available in real-time. This document considers this
from a network point of view, with a probable bias towards rehabilitation. It starts by
summarising information given in other documents.
2.0
Thames Valley (Trauma) Rehabilitation Network – a discussion document.
This document outlines the nature of a network and concludes that the collection,
collation and analysis of data is central to any successful network.
2.1
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3.0
3.1
3.2
The conclusion drawn, in relation to information was:
“The network can only succeed if it has a major investment in data collection and management
to cover:
Input. Numbers, and some quantitative data to characterise demand.
Structure. A directory of available services and their areas of expertise, capacity, referral
processes etc will be essential to facilitate transfer of patients out of acute trauma beds rapidly
Process. Basic data on the flow and transfer of patients from service to service and organisation
to organisation, especially documenting delays and inappropriate service use will be needed to
start altering services. This will also require collecting data on rehabilitation prescriptions, their
completion and the extent to which recommendations are undertaken.
Outcome. Simple clinical measures of outcome, such as the Barthel ADL index, transfer
destination/placement, and single focused questions (e.g. “Are you working?”)”
TVRN – Implementing the Rehabilitation Prescription – a discussion document.
This document suggests that the rehabilitation prescription is a major innovation that
may help transform services. However its success depends upon (a) identifying all
patients with an International Severity Scale score of nine or more who are deemed to
need a prescription and (b) being able to share it across all services and organisations
and (c) being able to add to and to update the prescription over time.
It concludes that:
“In practice there are probably three choices:
 a set of paper-based prescriptions that apply at different times/places (e.g. at 48 hours, on entry to
a specialist in-patient unit, on transfer from a non-rehabilitation service to another, similar
service and so on
 a single paper-based prescription that is potentially very detailed, but allows gradual completion
with some indication of minimum data that must be inserted; this would depend upon added
pieces of paper to cover updates.
 An electronic, computer based system with the document/data being electronically available across
the network, with systems in place to note significant changes (when, where, who by) and easily
printed out to place in non-electronic notes and to give to others
In the long-term the only system that has any chance of improving practice and providing good
feedback to the network is to have an electronic database. Paper-based systems will fail
rapidly: entries will be incomplete and often illegible; sheets will get lost; copies to the network
TVRN – information and data requirements.
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will not arrive on time or notat all; there will be difficulties in data capture and analysis
(secondary data entry into a data-base is simply wasteful); there will be difficulties in tracking
changes; etc etc”
4.0
SUGGESTIONS ON DATA – INFORMATION NEEDS AND COLLECTION
This section considers what data might be needed and how it can be collected. It does
not consider pre-hospital data.
4.1
Registration
Every patient entering a hospital with an International Severity Scale score of nine or
greater must be registered onto a master data-base. This is required (a) to facilitate all
subsequent data collection and (b) to set actual data collected in context, especially by
comparison with other networks.
4.2
As far as I understand, it is relatively easy to calculate an International Severity Scale
(ISS) score within three hours of arrival, or less. The only important fact is whether or
not the score is nine or greater; at this stage the actual score is unimportant.
4.3
Thus every Emergency Department must have staff trained to calculate whether the ISS
score is at least nine, and must have immediate access to a computer database to
register the patient (name, NHS number, hospital number, date of birth). The system
must allow registration of ‘unknown’ people temporarily.
4.4
Input data
The most important data are the numbers, captured by registration. However data that
characterise the patient will be needed also both to compare across areas, services etc
and also to interpret outcome data. These data should largely be generated and made
available within the first few days.
4.5
I would suggest:
 Bodily regions injured significantly (tick list):
o Brain and skull and face
o Thorax (cardio-respiratory)
o Spinal Cord
o Abdomen and its contents
o Limbs (bones and joints, including pelvis)
o Soft-tissues (muscle)
o skin (burns)
 ISS score
 Level of consciousness at 24 hours (Glasgow Coma Scale items)
4.6
Structural data
This is the most essential and most difficult data set to collect and to keep up-to-date,
but without it the network will not have the information to use all available resources.
4.7
As I have argued (Thames Valley (Trauma) Rehabilitation Network – a discussion
document), the fundamental unit of the network must be a (specialist) service; a team of
group of people sharing common expertise and common goals. I have also argued that
the network needs to start by including all services currently used by patients after
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trauma, even if they are not especially appropriate. If this does not occur, a group of
services will become ‘invisible’ (not on the list of options) and capacity will seem to
shrink suddenly.
4.8
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4.9
Every service needs to give its expertise, it additional resources, its contact details etc.
The type of data might include:
name, location, contact details, geographic area covered
host organisation (NHS Trust, Social Services, Primary Care etc)
specific area of expertise (free-text and from a check list)
any specific exclusion criteria (e.g. unable to manage tracheostomy)
extent to which it delivers other services (rehabilitation, high-dependency support etc)
o details on these services
Capacity (patient; cross-sectional, turnover)
Staffing levels (allowing for expected absence and vacancies)
Process data
These data should allow a picture to be developed of how patients travel through the
system. This obviously depends upon the NHS number (or other unique identifier)
being used in all settings. The data should also identify areas of inefficiency.
4.10
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The type of data collected might include:
date (?and time) of admission
date judged no longer requires to be in this setting/service
date transferred out
date started contacting possible transfer destinations
transfer destination (named, and also if judged best, appropriate but not ideal, or suboptimal)
 rehabilitation prescription
o completed by discharge
o copied to: GP, patient folder, destination service, last service
 Barthel ADL index score on admission and on discharge (this helps (a) show
change/improvement or lack of it, (b) characterise patient to understand pathway, (c) to
double check on completion of prescription.
4.11
Outcome data
There must be some outcome data. Initially this should be very simple. Ideally it
should be collected at 12 months. A possible questionnaire is attached (we use similar
questionnaires without much difficulty); it could be completed by phone, on line, by
email or by post.
4.12
A simpler set of data could be:
 is the patient alive or dead?
 is the patient in some form of residential or institutional care?
 does the patient report requiring any assistance with personal daily activities (washing,
toileting, getting from bed to eating area, dressing)?
 does the patient report a full return to previous work and leisure activities?
 does the patient report having any residual symptoms or problems?
4.13
A similar set has been used to audit stroke care and found valid and reliable.
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4.14
The data-base
Over the first few years the database will need to adapt and evolve rapidly in response
to systems and dataset that work well and are easy to collect and to others that show
difficulties.
4.15
It must also start feeding back information and start helping people as soon as possible,
even if only partially complete. In this way it will gain engagement from users, greatly
increasing its power.
5.0
CONCLUSION
An investment in a computerised data base shared across Thames Valley (and further
afield) that can collect and disseminate information about all trauma patients to all
services could not only transform trauma rehabilitation, but all other rehabilitation.
The amount of patient-level data needed is not great, though the system will also
facilitate clinical care of individual patients through transferring clinical information.
Additional data on service capacity, and the skills and services they offer will also
facilitate smooth running of the network.
Derick T Wade,
February 12th 2012
Consultant and Professor in Neurological Rehabilitation
Director of Trauma Rehabilitation, Thames Valley area (Bucks, Berks, Oxon)
Oxford Centre for Enablement, Windmill Road, Oxford OX3 7HE
Tel: 01865-737306; Fax: 01865-737309;
email: derick.wade@ouh.nhs.uk; derick.wade@ntlworld.com