Thames Valley Trauma Rehabilitation Network
Innovation funding proposal
This document outlines a proposal for innovation funding to support the improvement of
rehabilitation services for people who have experienced major trauma. The central proposal is
to develop and use a web-based data-collection and dissemination system that is fully
accessible to patients and relatives so that they can contribute important information for clinical
use, so that they can review the accuracy of information being used by healthcare and other
services, and so that they can follow through on clinical recommendations made. Basically the
proposal is to implement the innovation of a ‘rehabilitation prescription’ by putting the
rehabilitation prescription in an electronic data-base that is co-owned by the rehabilitation
services involved and the patient. This approach should increase engagement of patients and
families with the process, should improve the degree to which all management is patientcentred, and could also have a therapeutic benefit through enabling patients and families to be
much more engaged in the rehabilitation process. This document describes the main proposal,
discusses its relationship to the medical record and its governance, considers archiving and
then discusses briefly a range of other practical matters and benefits.
1.0
INTRODUCTION
The whole project on improving services for people after major trauma is innovative,
introducing several new ideas such as the rehabilitation prescription (a major
innovation) and the routine auditing of a very large group of patients on an ongoing
basis through the Trauma Audit and Research Network (TARN).
1.1
It has been widely recognised that the weakest part of the management of people after
trauma is the timely provision of rehabilitation in the appropriate setting and at the
appropriate level, and it is widely considered that there are insufficient rehabilitation
resources available.
1.2
This requires the rehabilitation process to be made as efficient and effective as possible,
using all available resources. The evidence suggests that effectiveness is greatly
increased through making rehabilitation centred on patient wishes and expectations,
which in turn increases the engagement and motivation of the patient who is enabled to
take charge of their own progress. Efficiency requires the full use of available
resources, which in turn requires a full, accurate and up-to-date inventory of all
resources.
1.3
One of the reasons that rehabilitation is weak is that no one person or organisation has
responsibility for the patient who always is passed from service to service and
organisation to organisation. Each service focuses on its own speciality, and ignores
other aspects. There are currently few services that accept responsibility for
rehabilitation.
1.4
In order to improve rehabilitation it is vital that the patient’s whole pathway through
the maze of Health and Social Services is tracked and monitored. At present this is
impossible on a large scale; even tracking one patient takes great effort.
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1.5
Modern technology offers much better (easier, more likely to be used) methods for
increasing patient involvement in their own management. It also offers ways of
following a patient as they move from place to place and service to service.
1.6
This document outlines a proposal for an innovation not yet tried or developed for use
with large numbers of patients with acute illness that may lead to long-term problems.
If it is successful, a similar system could benefit many people with other similar
conditions such as stroke, multiple sclerosis, rheumatoid arthritis etc.
1.7
The document starts with an overview of the proposal. It then discusses several specific
aspects and finishes with how it might be evaluated.
2.0
THE PROPOSAL
The central proposal is to develop a web-based data entry and handling system that is
specifically tailored for use by the patient (and family) as an equal partner in the
rehabilitation process, able both to enter data and to read data as other members of the
rehabilitation team do. This system would, with the permission of the patient, but
available in all healthcare setting and, more importantly, would be equally available in
all other settings such as to Social Services, to community rehabilitation services, to
vocational rehabilitation services and to voluntary sector organisations.
2.1
The information would be shared with and copied into any relevant permanent
healthcare record (i.e. the patient notes or Computerised Record System) and it would
not in itself be the medical record.
2.2
The information would be focused on the rehabilitation prescription, and would in
effect become a ‘patient-held record’ of most of the information of importance to the
patient. It would greatly improve continuity of care with a consistent management
plan extending across organisations and services and over time.
2.3
The Rehabilitation Prescription is itself a major innovation with the potential to
transform rehabilitation and patient care. However, although the idea is revolutionary
the Clinical Advisory Group did not consider or discuss how it might be implemented
in actual practice.
2.4
This proposal is therefore also a part of implementing the innovation that is the
rehabilitation prescription.
2.5
Rehabilitation is a multi-disciplinary educational process that focuses on the functional
activities undertaken by a patient as part of their social role performance. Consequently
rehabilitation is set with the holistic, biopsychosocial model of illness.
2.6
This is important because effective rehabilitation requires a much broader and more
detailed range of information than is needed simply to diagnose and treat disease or
trauma. This information is almost never recorded in medical notes (including nursing
and therapy notes). Acquiring this information requires much time if done by
professional staff.
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2.7
This innovation offers both a new way to obtain a much higher quality of important
information and also a method that requires much less staff time. This is to facilitate
direct entry of information by patients and relatives. This could include uploading
pictures and even videos both of how the patient was before the trauma, and how they
are at a particular time. This information will help staff gain an insight into the
patient’s situation.
2.8
Two further challenges faced by the network are to engage teams that may not be
specialised rehabilitation services in the process of rehabilitation and to use all
rehabilitation resources as efficiently as possible.
2.9
Engagement of non-specialised teams in the process of rehabilitation is vital for two
reasons.
2.10
First, rehabilitation is and must be a parallel process that occurs alongside the surgical
and medical management of the trauma from the first few hours. Thus wherever the
patient is, the responsible team must be giving the best rehabilitation environment
possible.
2.11
Second, it is neither appropriate or practical for most patients to be admitted into units
and services that are exclusively specialised in rehabilitation. It is impractical given the
very small specialised services available or likely to become available. And although
almost all patients may benefit from assessment by and advice from a specialist service,
it is a relatively small number who will need admission to such a service.
2.12
Thus it is vital that there is an inventory of what services are available (for all patients),
including what specialised services are available and it is vital that specialised services
can and do see most patients for assessment and advice, but often they will advise on
the most appropriate use of locally available services. This is only possible if there is an
up-to-date, comprehensive inventory.
2.13
Setting up and maintaining a full register of resources has never been achieved for
rehabilitation services. Although there is a plan to have a directory of emergency care
services for patients (the 111 service), this is restricted to emergency care. Furthermore
no-one has yet successfully set up and maintained an accurate, consistently up-to-date
directory of a wide range of services for a locality.
2.14
This proposal’s innovation is to use the same database (so that patients and all services
can access the information) to hold the register and to make the services and units
responsible for entering and maintaining their entry in the register.
2.15
This should be achieved using a mixture of obvious benefits to the service and obvious
disadvantages if they fail.
2.16
Any service who is accepted as a part the network will have access to the register; this
will give them a direct benefit. They will also gain in terms of having patients referred
and gaining access to the rehabilitation component of the tariff which will only be given
to services registered as able to deliver rehabilitation.
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2.17
In the beginning there will be no penalties, and everyone and anyone will be
encouraged to give details about their services.
2.18
One way to initiate the register is to ask the rehabilitation co-ordinator in each trauma
unit to register all services involved with patients in the unit and, in addition, to ask
first-order service providers what services they refer on to or use and then to register all
of these.
2.19
A second way is to track what services are given to patients after trauma, using the
data-base, and to register each service.
2.20
Other services will be identified and registered in other ways, including using publicity
campaigns.
2.21
The goal would be to have an initial register within six months. Then further work
would be needed to make it consistent in the level of detail, and to start involving
services in developing and maintaining the data-base. After about 12 months it should
be sufficiently embedded that services both use it and up-date their details routinely.
2.22
Eventually, perhaps after two years, one might consider introducing a rule that if a
service fails to enter accurate data and/or if it fails to update the information every
three months, then it will potentially lose its registration as part of the rehabilitation
network and therefore lose income.
2.23
A third innovative aspect of this proposal is that it is accessible to and will record all of
the services involved. This will automatically allow the network to audit patient flows,
and the services received across the whole network. It will allow identification of
delays in patient transfer, and through the patient prescription it will allow
identification of gaps in service availability.
2.24
Assuming that the data-base is also used to collect patient satisfaction data and patient
outcome data, all entered by the patient at predetermined times after trauma, then the
data-base will allow auditing of the quality of the service.
2.25
Fourthly, the rehabilitation prescription itself will or should start adding specific,
targeted ‘audit questions’ after the first six months, and this data-base would hold the
answers to facilitate auditing of services against specific questions.
2.26
Lastly this proposal allows all of the information to be analysed in real-time. For
example one could identify how many patients are in a particular service and whether
that service has some unused capacity (by comparing capacity used again stated
capacity in the register entry).
2.27




In summary this innovation should improve rehabilitation by facilitating:
full engagement of the patient in the rehabilitation process, including self-management
engagement of all clinical teams in the rehabilitation process
providing real-time information on patient flows and spare capacity
a much better, fuller set of patient-centred information to inform the rehabilitation
process
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 allowing ongoing, real-time audit of patient satisfaction and outcome
 possibly a therapeutic process for the patient and family and reducing emotional distress
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3.0
GOVERNANCE
One obvious concern about this proposal is the governance arrangements to protect and
respect confidentiality of the information, and to allow limited access to certain areas of
information. This section discusses these matters, but a much fuller consideration will
be needed in due course.
3.1
This clinical record cannot be the legal ‘medical record’; it cannot be the sole or main
record of all healthcare actions, communication etc. Its primary function is to be the
patient’s own “rehabilitation prescription”, a record of all important information, a
record of rehabilitation recommended, a record of rehabilitation goals set and
interventions given, and a record of rehabilitation and service outcomes. It is,
ultimately, the patient’s record and not the healthcare record.
3.2
There are also more practical reasons why this cannot be the definitive legally sound
medical record. First, the patient has full access and could possibly delete or remove
information. Second, it may not be possible within the resource available to set up
systems that audit every single entry and access to the record. Third, ideally it will also
allow people in other organisations to enter information, and they are not part of the
healthcare system.
3.3
The patient will need, in principle, to be able to determine who can see what in the
record and to determine who may enter information; it is their record.
3.4
However, initially at least, the record will have to be open to the whole healthcare team;
in many cases the patient will not have the mental capacity to give authority yet it is
imperative that a rehabilitation prescription is written.
3.5
I would suggest that making the rehabilitation prescription is seen as a healthcare
activity like all others where the healthcare team have a responsibility to act in a
patient’s best interests and to maintain confidentiality. Currently healthcare teams are
expected to share information on the same basis, and so there are no legal reasons that
impede the use of the record.
3.6
However the patient should be involved in the process as soon as it is possible.
3.7
A more formal process of giving the patient control should be undertaken:
 once it is possible that the rehabilitation prescription is going to an organisation outside
healthcare
 once the patient leaves the secondary healthcare system to enter community healthcare
systems
3.8
The patient’s mental capacity to take on responsibility must be established and
documented, and if they do not have capacity then decisions must be taken in their best
interests and must be documented and justified.
4.0
RELATIONSHIP TO MEDICAL RECORD
Much if not all of the information is of relevance to and should be within the medical
notes. If it were entirely paper-based the (a) much of the information originated from
healthcare teams and copies would naturally be kept and (b) much of the additional
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information that might now be entered by patients or other would or should be
obtained as part of health-based rehabilitation and so should be added to the medical
record.
4.1
Several issues arise relating to synchronising information between the rehabilitation
prescription and the medical record.
4.2
The rehabilitation prescription (which is what this web-based database is) should be
up-dated as and when new information arises, and certainly at each formal review and
at each transfer of care. However much of the information in the whole prescription
may be unchanged.
4.3
If a new copy of the whole prescription is stored each time an item is added or changed,
the medical record could rapidly become cluttered with multiple copies of the
prescription. On the other hand a piece of quite critical information might be added to
the prescription that is important for other aspects of medical care, and if it is only
added some weeks later it might lead to sub-optimal care.
4.4
It would however always be important to store in the medical record a copy of the
prescription whenever it is formally reviewed, either at a transfer of care or during a
prolonged episode in a single service.
4.5
The solution is to have some link that adds new items to the medical record or shows
changes in single items, showing this within a short time of the change or addition, and
that automatically copies the new prescription generated at a review in its entirety.
4.6
The patient may however add information to their own prescription that they explicitly
do not want added to the medical record. Hopefully this will be rare.
4.7
The solution is, firstly, to acknowledge that this is a legitimate request that must be
considered.
4.8
Any such request should be discussed with a senior member of the rehabilitation team.
Some information might be central to good medical or rehabilitation care, and if
possible the patient should be persuaded to allow such information to be added from
the prescription. The alternative is for the clinician to add the information directly to
the medical record; the patient must be informed when this is going to occur, and why.
4.9
Other items should be marked (electronically) as being restricted and not for transfer
into the medical notes; they should also not be printed out routinely.
4.10
Entries from other organisations should be transferred unless the writer explicitly
directs otherwise; any paperwork shared with health would normally be filed into the
medical records.
5.0
ARCHIVING
One issue that needs to be discussed is the archiving of the information once a person’s
rehabilitation is complete.
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5.1
On the one hand the information held in the various rehabilitation prescriptions written
during the course of a person’s rehabilitation will be an invaluable record in many
ways. Clinically it may be relevant for years, even after initial rehabilitation is
complete. Patients often return to health services with problems relating to their
trauma – complications that develop late, renewed concerns about existing problems,
exacerbation of problems when a new illness arises etc.
5.2
It also potentially could help in research; if every patient’s progress is recorded then it
would be an invaluable observational data-base for anonymous research into prognosis,
complications etc.
5.3
On the other hand the volume of data held will potentially become vast. Most of the
data will already be in other places such as the hospital medical records (albeit scattered
across different hospitals) and in general practice notes.
5.4
Moreover the data arguably belong to the patient.
5.5
My suggestion is that all data are kept for five years, at which point the file is archived
in the medical records of the admitting trauma centre or unit. I would also suggest that
the patient is asked whether they permit the data to be used for aggregated research
investigations.
6.0
PRACTICAL MATTERS
This section discusses some practical matters; there will be many more I have not
thought of!
6.1
Research
The data-base will be a register of all people with a trauma score of ISS 9 or more.
When linked with the TARN data-base the rehabilitation prescription data-base will
facilitate observational research on a sound epidemiological basis.
6.2
It could also facilitate recruitment of patients into rehabilitation research projects.
6.3
Outcome and follow-up
The data-base should enable the collection of routine outcome assessments. It would be
easy to set up patient-centred outcome data collection at fixed times after trauma (say 6,
12 and 24 months). The data-base could automatically email, text and write to the
patient to prompt access and participation in an on-line questionnaire.
6.4
Obviously not every patient will necessarily respond. However as the patient is a coowner of the data-base and will probably have entered information already, they are
more likely both to want to enter outcome data and to do so.
6.5
6.6
Arrangements would need to be put in place for several groups of patients:
 those who cannot access the data-base as they have no access to a computer
 those without the cognitive and/or motor ability to use a coputer
 those who do not respond, perhaps by telephoning personally
“joining a club”
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One way of increasing patient and family engagement would be to make involvement
like joining a club. People could be offered membership of a ‘trauma survivors club’.
The data-base could be used to give information about local support groups, perhaps to
distribute a newsletter etc. (My knowledge of blogs, social networks and twitter is
limited but all could be made on offer I assume.)
6.7
Enriching the clinical information
This proposal potentially enables a much better (fuller, more accurate) set of clinically
important information to be available. It allows patients to give more information
about themselves, their wishes and expectations. It could allow photographs and even
short videos to be recorded; generally a picture is actually worth a thousand words in
rehabilitation – and a video several thousand.
6.8
This could be extended to collecting a rich set of outcome data. For example each
person could be encouraged to give free text answers to a set of questions covering both
their experience of the service and their outcome. The National Clinical Audit of
Services for People with Multiple Sclerosis did ask for comments and collected
comments from about 500 people over three months and analysed the data, so it is
possible and helpful.
7.0
CONCLUSION
This proposal is to implement the important innovation proposed by the Trauma
Clinical Advisory Group, the rehabilitation prescription through developing the first
electronic rehabilitation record that is co-owned with the patient, is web-based and is
accessible to anyone involved with the patient’s rehabilitation.
7.1
A second innovation is to set up within the same data-base an inventory of all services
available, and to make this accurate and fully maintained by making completion a
necessary condition for belonging to the network, gaining access to useful information
and being eligible for the rehabilitation tariff.
7.2
Thirdly the system will allow the network to have real-time information on patient flow
and capacity, and to set up mechanisms to obtain data on outcome and patient
satisfaction.
Dr Derick Wade,
Consultant and Professor in Neurological Rehabilitation,
Director of Trauma Rehabilitation, Thames Valley Trauma Network
Oxford Centre for Enablement, Windmill Road, Oxford OX3 7HE
Tel: 01865-737306; Fax: 01865-737309; email: derick.wade@ouh.nhs.uk
March 4th 2012