Thames Valley Trauma Rehabilitation Network – Data to collect
A discussion document
This document considers the initial core dataset needed within the Thames Valley Trauma
Rehabilitation network. It outlines why data are needed: to give a useful inventory of the
services available, to monitor processes and outcomes, and to ensure that the whole population
of people with major trauma is served and benefits. It outlines some general principles, most of
which are obvious and probably well known. It then considers what might constitute an initial
data set covering structure (what exists and what does it do?), input (how many patients and
what are they like), process (what happens over time, especially looking at delays), and
outcome (what happens to the patient). It also uses the rehabilitation prescription, suggesting
that it should be done both on admission and at discharge from a service so that gaps can be
identified. It suggests that each service should collect its own data-set; aggregation will occur at
network level and patients will be tracked through their NHS number. Each service may have
an analysis of its own data for its own use. The network will need to collect outcome data at 12
and 24 months, and some suggestions are made. It concludes that there is a very high priority
on setting up and funding a database.
CONTENTS
1.0
2.0
3.0
4.0
5.0
6.0
7.0
Introduction. Setting the scene.
Why are data needed? Why we need to bother!
General principles – reasons and questions. Data collection for a purpose.
General principles – data and collection. Simple, relevant data and processes
Data, and its collection in the network. The meat! What, why, etc..
Service units, and participation in the network. Rules, benefits, responsibilities.
Conclusions.
1.0
INTRODUCTION
A network, almost by definition, depends upon having available information about its
components (structural data), and collecting and analyzing data on process and
outcome from across all its constituent parts. Only with these data can people use the
network productively and only with these data can the network improve its function
and adapt to changing demands.
1.1
There are several pre-requisites to collecting data, all of which arise from the need to
match the investment made by people in collecting the data with the benefits that arise.
The most important pre-requisite is to agree on the question to be answered by the data.
1.2
There are also some requirements of data handling and analysis. These centre upon
maintaining data integrity and confidentiality (for patient data), and upon undertaking
analysis quickly and in response to requests.
1.3
This document discusses these and other issues in relation to the Thames Valley
Rehabilitation Network; the content will apply to other similar networks.
Thames Valley Rehabilitation Network, data needs and collection. 29-01-2012.
Page 2
2.0
WHY ARE DATA NEEDED?
Before starting, it is worth, briefly, considering the goals of collecting and analyzing
data.
2.1
The network comprises a large number of geographically and organizationally
dispersed services, and it is unlikely that anyone will know about all of them, their
strengths and weaknesses etc. Furthermore over time services will change, and new
services may join or others may leave.
2.2
Thus there is a need to have an inventory of services, defining in detail the structure of
the network.
2.3
The network is aiming to improve the efficiency of rehabilitation, and thus it will need
to record information about processes. These will centre largely on individual patients,
and their passage through the network.
2.4
Thus there is a need to have patient-specific data defining the processes within the
network.
2.5
The network is also aiming to improve the effectiveness of rehabilitation so that patients
have a better long-term quality of life. These data will also be centred on individual
patients.
2.6
Thus there is a need to have patient-specific data defining the clinical outcome.
2.7
Finally the network has as its goal the general improvement of outcome for all patients
presenting with major trauma. In order to interpret any of the data it will be important
to know something about the patients being admitted into the network.
2.8
Thus there is a need for data on patient input (intake).
3.0
GENERAL PRINCIPLES – REASONS & QUESTIONS
The over-riding first principle is to agree clearly and unambiguously what the reason(s)
are for collecting the data. What questions are going to be asked of and answered by
the data? A failure to consider this fully underlies most subsequent difficulties.
3.1
The first general reason is to allow anyone to know what services are available within
the network so that patients can be transferred to an appropriate service. The main
questions about each service are what does it do, what are its resources, and how are
referrals made?
3.1
The second general reason is to describe what is happening, with the main questions
arising from this concerning points within the pathway that are self-evidently
inefficient or ineffective. Thus we will need to know the pathway for each patient, and
whether transfers were always appropriate (i.e. was the service receiving the patient
able to meet his needs?) and whether transfers on were delayed (i.e. did the patient no
longer need to be in the service?)
Thames Valley Rehabilitation Network, data needs and collection. 29-01-2012.
Page 3
3.3
The third general reason is to improve the network, and the main questions relating to
this are (a) the services appropriately resourced and delivering a clinical service at an
appropriate standard, (b) there particular recurring areas of inefficiency and/or
ineffectiveness that need specific attention and improvement?
3.4
Lastly, over time, the reason is to monitor whether services are improving patient
outcomes or not, so that they can review their function and so that the whole network
can review its function to ensure that outcomes do improve and continue to do so. The
main question is whether, given the patients who entered the network ‘x’ years ago
have a better outcome, taking into account their trauma severity, than the patients who
entered the network ‘x+2’ years ago.
3.5
As a general point, the data may allow comparison with other networks so that each
network can learn from each other.
4.0
GENERAL PRINCIPLES – DATA AND COLLECTION
When evaluating services provides to populations, it is more important to have a
complete data-set on every patient than to have a more detailed data set that is not
complete for most patients. Thus one has to compromise between the ideal data-set
and the practically attainable data-set.
4.1
Some general principles apply.
4.2
First, for each question it is vital to collect only the minimum needed to answer the
question. Data should not be collected “just in case they come in useful” or because “it
might be interesting”. For many question single questions are appropriate.
4.3
Second, for each data item, the answer options must be clear and unambiguous, and
they must be both comprehensive and mutually exclusive. This ensures that data are as
accurate as possible. However, because it is rarely possible to think of every
eventuality, one should have an ‘other’ option for free text.
4.4
Thirdly, as far as possible the data collection form should not require specific additional
training or reference to large or complex instructions. The questions to the person must
be phrased simply, using plain English and the answer options must be the same.
4.5
Next, as far as possible, the person or people collecting the data should understand and
accept the reasons for the data collected and they should get some benefit from the
data.
4.6
Then the form (whether paper or web-based) should be clearly laid out and easily
negotiated.
4.7
Next, the data need to be considered in relation to time. Data on input, process and
outcome need to be collected and entered into the data-base contemporaneously,
without significant delay. Data on structure need to be reviewed and brought up-todate on a regular basis.
Thames Valley Rehabilitation Network, data needs and collection. 29-01-2012.
4.8
Page 4
Finally it is essential that there is a register of all patients entering the network after
major trauma so that all other data can be placed in an appropriate context.
Thames Valley Rehabilitation Network, data needs and collection. 29-01-2012.
5.0
Page 5
DATA, AND ITS COLLECTION IN THE NETWORK
I suggest that the fundamental ‘data unit’ concerning input, process and outcome
should be the individual service and each service should collect the same information.
This will mean that each service can use the data to analyse their own performance
directly, which will increase the motivation to collect the data.
5.1




Thus the data-base will comprise a large number of smaller data-sets, one for each
component service. Each service will be responsible for entering:
structural data on the service, reviewed on a regular basis
input data on every patient transferred into the service
process data on every patent passing through the service
outcome data on every patient transferred out of the service
5.2
One vital piece of input data will be the patient’s NHS number (or another unique
identifier). This will allow the network, as a network, to track patients through the
system identifying common pathways and common problems.
5.3
The data from the whole network will therefore be comprised of the sum of the data
from each unit.
5.4
The only data that the network itself may and probably will need to take responsibility
for are data relating to longer term outcome at (say) 12 or 24 months after the injury.
5.5
It is likely that the data-set will evolve in time, as it becomes evident which data are in
fact unhelpful and as it becomes evident what extra data are needed. Moreover,
hopefully, as the service improves and settles it will be possible to collect additional
data to answer additional questions.
5.6
At this stage it is vital to minimize the amount of data collected so that systems and
people evolve, adapt and develop in response to initial difficulties. A suggested
minimum data-set will be discussed here.
5.7
Structure.
The main reason for this data-set is to inform staff in other places and settings what is
available, who for and how it is accessed. The main characteristics are that it should be
up-to-date and accurate, and easily searched.
5.8
The types of data items are likely to be:
 service ‘demography’: name, address, organisation it is in, staffing (in outline)
 service goals: what types of activities does it undertake and what outcomes does it am
for
 patient characteristics: what patients does it specifically manage, and are there potential
patients can it not help or manage (e.g. with a tracheostomy; aged under 16 years)
 available professions and expertise
 location of service delivery: inpatient, outpatient, in community
 further information/referral details: who, how etc
Thames Valley Rehabilitation Network, data needs and collection. 29-01-2012.
5.9
Page 6
Input.
The main reason for this data-set is to establish how many patients are transferred in
and how appropriately, and in relation to transfer out what delays occur and where
patients are transferred to.
5.10
The types of data items on each patient are likely to be:
 Needs identified on rehabilitation prescription from referring service
o and how many of these the service thinks it can meet
 Dependence of patient: the Barthel ADL index
 Needs identified by this service on its first rehabilitation prescription
o and how many of these the service thinks it can meet
5.11
Process.
There are two potential reasons for collecting process data. The first is to identify
delays and inefficiencies. The second is to monitor effectiveness of the service (is it
performing processes that are known or considered to be beneficial). At this stage I
suggest that the emphasis should be on monitoring delays.
5.12
The types of data items needed on each patient are likely to be:
 Time between initial referral and actual transfer (this may not all be delay, and it also
monitors forward planning by the referring service)
 Time that judged no longer in need of this service
 Time that started to look for and refer to next service
 Delay between time ready to transfer, and actual transfer
 Total length of stay
5.13
There will also be a set of data items concerning rehabilitation prescriptions:
 Time to formal review of referral prescription
o and details of those reviewing it (professions, seniority/expertise)
 Time to generation of first internal rehabilitation prescription
o and details of those generating it (professions, seniority/expertise)
 Time of generation of discharge rehabilitation prescription
o and details of those generating it (professions, seniority/expertise)
5.14
Note that I am suggesting an initial and a discharge rehabilitation prescription which
allows the service to consider and if necessary revise the referral prescription.
5.15
Outcome.
The reason for these data is to monitor patient progress through the network. At this
stage only a minimal data-set is recommended. However individual services are free to
collect whatever additional data they wish (also see later).
5.16




The types of data-items needed on each patient are:
transfer destination – service name
transfer destination – home, residential care, inpatient service etc
Barthel ADL index
Rehabilitation needs identified
o and an estimate of whether the next service can or will meet them
Thames Valley Rehabilitation Network, data needs and collection. 29-01-2012.
5.17





Page 7
At 12 months the network should try to obtain, by phone, email or letter some outcome
data. The types of data might include:
the Stroke Outcome questions (very simple, valid, well tested, easily applied)
o 'In the last 2 weeks, did you require help from another person for everyday activities?'
o 'Do you feel that you have made a complete recovery from your trauma?'
Glasgow Outcome Scale
Place of residence (same, different in community, residential etc)
Work/education (compared with before)
Mood (single depression question; valid etc)
6.0
SERVICE UNITS, AND PARTICIPATION IN THE NETWORK
The existence of a network data-base such as the one outlined above should help in
developing and improving the identity and coherence of the network.
6.1
Belonging to the network will carry some advantages. The network will set up and run
the database. Consequently the service will have access to a database about their own
service that will allow them to monitor and improve service. Furthermore by being on
the network database of available services each service may be able to ensure
appropriate referrals and in many cases more referrals. Referral on to the next service
will be simplified through the inventory of services, reducing delays and documenting
those delays that do arise. Eventually it might allow some comparison between services
which may benefit individual services who may develop services where currently
resources are inadequate.
6.2
However service units that join and participate in the network will also have some
responsibilities. Initially the primary commitment must be to provide all the data
requested. Prolonged or repeated failure to do so might lead to removal from the
network.
6.3
Over time (several years) the network data-base will allow the network to set and then
increase quality standards. Participating services would be expected to react to any
major problems identified.
6.4
From the network’s perspective, individual services should be allowed and possibly
encouraged to add particular data items that are relevant to them. There would need to
be a procedure to evaluate any proposal, and in return for this privilege the service
would be expected after one year to give feedback about the feasibility and utility of the
new items. This process should allow the network as a whole to improve, with proven
items being generally introduced as appropriate.
Thames Valley Rehabilitation Network, data needs and collection. 29-01-2012.
7.0





Page 8
CONCLUSIONS
This document has suggested a minimal core set of data that should be
relatively easy to collect
relevant to each service
able to identify major areas of inefficiency
able to identify major areas where resources are inadequate
able to monitor change over time across the whole network.
7.1
It has also suggested that the existence of a good database across the network will allow
the network to collect the data and analyse it to improve services.
7.2
I think that there is a very high priority on developing this database as soon as possible.
Without it the network will have difficulty in meeting any of its goals effectively.
Derick T Wade,
January 29th 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