APPENDIX 16
Memorandum by Rupert Fawdry (MS 22)
A. PERSONAL INTRODUCTION
A1. Although of British origin I grew up
in the Middle East, where my father worked as a doctor with the
Colonial Medical Service at first in Cyprus and later in Aden.
In all I have some 14 doctors among my close relatives and I
myself qualified as a doctor at the London Hospital in 1964.
By 1971 I felt sufficiently prepared to start working in a charity
mission hospital in Isfahan, Iran. In 1979, when the hospital
was taken over by militants, I drove back overland with my wife
and three young daughters.
A2. For the past 19 years I have been a
Consultant Obstetrician and Gynaecologist in Milton Keynes. For
10 of them I was also an Honorary Senior Lecture in Safe Motherhood
at the Institute of Child Health. I was quoted in both the Winterton
report and the supplement to the Cumberlege Report. I am currently
honorary treasurer of the British Maternal and Fetal Society.
A3. As a result of my unorthodox early career,
by the time I settled in Milton Keynes, I had worked under about
60 different patterns for my working week, at over 30 different
hospitals, about 20 different health centres, and as a junior
doctor to well over 30 different consultants in England, Scotland,
Canada and Iran. I had thus become vividly aware of alternative
ways of organising medical care and of the need for good medical
records.
A4. On my return from Iran in 1979, knowing
my special interest in using the design of medical records as
a potential means of improving the quality of care and in reducing
human error, at the invitation of my consultant, John Scrimegeour,
and of Dennis Rutovitz of the Medical Research Council I was invited
to write an application for half a million pounds to the Chief
Scientist of Scotland to explore how computers might also help
to reduce human error. In 1982 I was, with Professor Richard Lilford
and Mr Mike Maresh, one of the three founder members of the British
Obstetric Computer Society.
A5. My priority for computing has thus always
been that they should primarily be used to reduce the stress,
the workload and the fear of medical error and litigation for
the overburdened health care worker. Too much computing, then
and ever since, seemed to be like telling the jumbo jet pilot
what mistakes he had made, how much the passengers were complaining,
how much the fuel was costing and how much easier it had now become
for him to look things up via the on-board internet manual—and
far too little effort was being devoted to helping the pilot to
fly the plane more safely. My own priority has always been "Don't
keep shouting at the driver; Instead try to improve the road".
A6. In 1984 I was the original creator of
the Pregnancy Health Record (Green Notes) which has now been used
by well over a million women in over 40 different districts throughout
Britain and elsewhere. I was the original proposer to the RCOG
council of the need for a National Maternity Record and spent
nearly 10 years working on the first attempt at that essential
project. I am now closely involved with what I see as it's successor,
the West Midlands "Pregnancy Notes" I am still convinced
that, if we are to make use of the power of computers to reduce
human error, we will eventually need to agree on the core printed
content of all ante-natal records.
A7. I have been involved, as a working party
member, expert advisor or contributor in some 20 initiatives concerned
with Maternity Case-Notes, Data Collection, Coding and the Organisation
of Maternity Care From 1988 to 1992 I was fully committed to
the MUMMIES maternity data modelling project only to see no useful
outcome. In 1998 I became strongly involved in the early stages
of the Maternity Care Data Project only to see it's early promise
fade into a final output which, being alphabetically rather than
chronologically based, could not be quality controlled by clinicians,
and as a result has been of minimal value to those designing maternity
computer systems. Sadly time and over again I have found myself
helplessly watching the almost unbridgeable gap between the complexities
of medicine and the rigid realities of computing, too often being
made worse by the dominance of management priorities rather than
giving adequate precedence to what I now call "Patient Encounter
Assistance"
A8. From 1990-2000 I provided much of the
expert "knowledge engineering" which enabled the Protos
clinical computer company to become one of the most successful
hospital clinical computer systems especially in Maternity Care,
Neonatal Units and for Diabetes. I stopped working with Protos
three years ago when I realised that they could not survive financially
without dancing to the tune of the latest customer, whereas I
would only achieve my ambition of using computers to improve the
quality of all maternity care if I was able to draft a universal
maternity computer paper specification regardless of any particular
commercial company. Such a specification would only be useful
if universal and it would only become universal if it were either
government supported or cost free.
A9. In summary, since 1979, to the detriment
of my health, my time, my finances and much else I have doggedly
continued to maintain my interest in both maternity paper records
and in what is now called Electronic Patient Records. Over the
past 10 years my determination to create a comprehensive universal
specification for all maternity care EPRs seems to have become
my own personal "Genome Project." Fortunately, for
reasons not relevant here, having found myself free from clinical
responsibilities for the past nine months, I have now, at last,
completed the first (dataset) stage of my IT vocation.
1. THE COLLECTION
OF MATERNITY
DATA
B1. My experience of maternity computing
and the collection of maternity data over the past 23 years has
now been distilled into a relatively short discussion document
entitled "The Future of Acute Hospital Electronic Patient
Records: `Patient Encounter Assistance' or `Paralysis by Analysis.'
" This is currently being submitted for publication but a
draft copy is enclosed.
B2. In the light of my prolonged and extensive
experience in medical IT and the realities of hospital electronic
records I would be more than willing to give oral evidence and
verbal clarification to the committee.
B3. The main NHS-IT initiatives concerning
maternity data have been the MUMMIES project (1987-1992) and the
Maternity Care Data Project—Data Dictionary (1998-now)
I was deeply involved in both these intiatives and both failed,
in my view, for similar reasons. For those who may wish to understand
more about what went wrong, supplementary material includes both
the discussion document which, in May 2000, I circulated to all
those involved in the MCDP-DD (entitled "Why am I so disillusioned"
and "What can be done easily to rescue the project."—Supplementary
Material A) and the updated assessment which I have prepared for
this submission, (entitled "Why has the Maternity Care Data
Project failed and what can we learn?" —Supplementary
Material B).
What is now urgently required
C1. My long considered conclusions are as
follows:
A. Computers Require a Single Comprehensive
Dataset
C2. Commercially viable computer systems
can only make use of a single comprehensive dataset; yet every
new paper-based dataset initiative has so far tended to neglect
the ideas, requirements and proposals of almost all other interested
parties.
C3. All the many smaller datasets relevant
to an EPR will only work if they are precise sub-sections of a
greater universal jigsaw. Yet within the past year for example
the recently revised Scottish maternity dataset, the current Maternal
Mortality proforma, the New Abortion Notification Certificate
and the Maternity Care Data Project proposals have all contained
different answer options to a question as simple as "Civil
Status" The Korner maternity dataset on "The Method
of Birth" does not include an option for a beech birth by
Caeasarean yet RCOG annual returns have required this information.
When it comes to different options for something like "The
Place of Birth", definitions seem to differ in every independent
paper based dataset so far studied. Having incompatible paper-based
datasets with equal authority means that either the midwife or
someone else has to enter the same information several times using
each different set of answer options, or else the purchaser of
the computer system has to pay for expensive programming costs
for what too often turn out to be obsolete within a few years.
At the last count I was able to identify some 70 such incompatible
datasets many of which are independently entered onto different
computer systems at a considerable cost to the tax-payer. (See
Appendix 1)
C4. B Not the Time for Yet Another Minimum
Maternity Dataset
In the light of the above, and with the ever
accelerating introduction of various kinds of electronic maternity
computer systems, now is definitely not the appropriate time for
yet another attempt to define a paper-based minimum maternity
data set (but see below paragraph C8). We already have far too
many incompatible independent paper based data requirements relevant
to maternity care.
C5. C. Paperless Maternity Records: Both
Impractical and Unethical
It is wrong to hope, or to believe, that a reliable
computer of some sort together with a working printer will, in
the foreseeable future, be reliably available at every time and
place in Britain where maternity care takes place. In addition
such electronic records would be unreadable by the majority of
expectant mothers just when we have finally reached the stage
of allowing all mothers to carry their own ante-natal records.
For these reasons, in maternity care at least, electronic records
will, for the foreseeable future, remain complementary to paper
records. They will not replace them.
C6. D. Minimal Maternity Commputer Systems
(Phase 1) in all Maternity Hospitals
It is, however, quite reasonable to expect that
an adequate number of reliable computer terminals and printers
soon will be, (and ought to be), universally available a) at the
time of the dating scan, b) in all delivery suites and c) in all
post-natal wards. (What I have called Phase 1 in a 4 stage process.)
There is no reason why this should not be achieved relatively
soon at no expence whatsoever to central government.
C7. E. The Need for a National Resource
Document for Maternity Data
In order to decide what data can reasonably
be collected using such minimal (Phase 1) maternity computer systems
there is an urgent and essential need:
C8. (i) to take account of all the existing
datasets and to bring them together in a single comprehensive
chronologically based document ie they must all be seen as small
parts of a single large EPR jigsaw. Such a document will only
be of adequate quality if it takes full account of all exisiting
proposals, suggestions and demands from all interested parties.
C9. (ii) to suggest an optimum wording
for each question and for all allowable answer options. Each standard
question and answer being created in a way that meets the needs
of the maximum number of interested parties. Any local suggestions
for improved wording to be made nationally available.
C10. (iii) to document for every question
the unambiguos denominator criteria (eg Only to require data entry
regarding "Has been a Tubal Ligation during the birth admission?"
if there has been a Caesarean Section or the time and date of
the start of the first stage if there has been a labour).
C11. (iv) in time, after full consultation,
to insist that all electronic maternity records, regardless of
the commercial company or hospital or health centre involved,
should be required to use the same nationally agreed standard
wording.
C12. (v) to work out some reasonable
criteria for deciding which items a) should be included in a recommended
national electronic dataset b) which items might be optional (but
if included should use nationally standardised wording) and c)
which items are not suitable for electronic data entry.
C13. (vi) to take full account of the
potential extra workload and cost of such data entry by midwives
or other health care workers in making the above decisions.
C14. The Advantage of Electronic Standardisation
in the Care of Individual Mothers
Once a standard set of electronic maternity
data questions and answers had been agreed in a single paper document,
only then will it become possible to facilitate the transfer of
appropriate subsets of data in a woman's electronic record between
different maternity hospitals and health centres.
C15. The Advantage of a Pool of Standardisation
Anonymised Electronic Data
Once such a national standardisation had been
achieved then all the interested parties can decide what more
limited datasets they might require from the same overall large
pool of anonymised standardised data. It would also then be possible
for all authorised organisations to select an area of annual priority
and then to study that particular topic in depth, not only for
that single year but also for an ever increasing number of preceeding
years.
C16. Paper Subset of the Electronic Version
Once a standard national maternity electronic
dataset has been agreed, it would still be reasonable as a temporary
measure for those hospitals which have not yet purchased a maternity
data system to be required to provide on paper a standard subset
of the agreed national electronic dataset.
"FAWDRY'S
MATERNITY AND
NEONATAL EPR DATA
RESOURCE"
D1. As the culmination of my work over the
past 23 years, and in the absence of any adequate alternative,
at my own expense and in my own time, (mainly to the detriment
of any private practice, and, for the past nine months on a virtually
full time basis) I have now finally created what I have long been
convinced would be needed and what a series of NHS IT initiatives
have sadly failed to achieve. There now exists a massive resource
document on maternity data (some 500 pages of small print)
D2. This document
(a) takes full account of all the immense
efforts by by scores of doctors, midwives and managers in the
wording of 70 or more existing UK datasets (together with several
from abroad) See Appendix 1.
(b) includes so far some 2,000 potential
maternity data items; and
(c) provides a comprehensive analysis of
all of the items which might be of relevance to an maternity electronic
patient record.
D3. In particular this data resource takes
exhaustive and comprehensive account of all relevant work done
through each of the following initiatives: The MUMMIES Project
(1987-91), The BAPM Neonatal Dataset (1997), The Scottish SMR
Returns (1999 & 2001), The Thames Maternity Data Project (1997-99),
Ralph Settatree's proposals for the RCOG Korner Revision Working
Party (1999), The National Obstetric Anaesthetists' Dataset (N.O.A.D)
working party (1999-2001), The Maternity Care Data Project-Data
Dictionary (1998-2001), The National Baby Number and New Birth
Notification Projects (2002), The West Midlands MANNERS project
(2001—current) together with well over 50 other datasets
relevant to maternity computing.
D4. A sample of a single page of that 500
page resource is attached.
A copy of the original is available if required.
WHAT TO
INCLUDE OR
EXCLUDE?
E1. One of the main problems with the Maternity
Care Data Project has been it's failure to develop any criteria
for the inclusion or exclusion of data items as a national recommendation.
For example it includes such items as the kind of apparatus used
to measure the blood pressure, the stillbirth certificate code
or the batch number and time as well as the date of any BCG vaccinations.
E2. Yet the number of data items which could
potentially be included in an electronic record is virtually infinite.
E3. Recent work by a research team from
the University of Brighton (see www.inam.brighton.ac.uk/eprproject.htm)
has confimed my own long held conviction that the introduction
of computers into maternity care has universally been found to
increase rather than decrease the workload of midwives.
E4. It is far too easy for those who wish
for more data to underestimate the extra workload involved for
each new data item they insist should be collected.
E5. Not only is the number of potential
data items infinite but the potential workload of entering data
is also virtually infinite.
E6. In my concern for the potential for
"Paralysis by Analysis" of our already overburdened
midwives I wrote a discussion document entitled "The Workload
and Cost of Electronic Patient Record (EPR) Data Entry —Using
assessments of the workload and cost of data entry in the selection
of data items for Maternity Electronic Patient Records (EPRs)"
(see Supplemetary Document C).
THE "START
WITH THE
FAWDRY 500" MATERNITY
DATASET PROPOSALS
F1. Assuming what I have called a phase
one maternity computer system in every maternity hospital and
using the criteria I developed in that article, I have found it
possible to classify each potential maternity data item under
one of the following categories (see Supplementary Document D).
A. "Patient Encounter Assistance"
items.
i Downloaded from the main hospital Patient
Administration System (PAS) or equivalent.
ii Cost Neutral (Previously paper to paper
in a place where a VDU and printer is now available).
iii Individual Care Quality (National workload/cost
must be calculated for each proposal).
iv Electronic Transfer from other computers.
v Computer-Generated; based on the above.
B. Items collected purely for Management
Needs/Audit/Workload Forecasting/Research/Governance.
i Retrospective Analysis only (National workload/cost
must be calculated for each proposal).
ii Workload Forecasting (National workload/cost
must be calculated for each proposal).
iii Computer-Generated; based on the above.
C. Other
ii Not appropriate for Paper or EPR collection.
F2. By selecting only those items which
are relevant to Patient Encounter Assistance I found myself able
to select about 500 maternity data items as being suitable for
priority national standardisation. (See Supplementary Document
E.)
F3. Using a high quality flow-patterned
maternity computer system, recording about 350 of these items
should not involve any extra cost or workload. The other 150
items will add to the workload and cost but can be classified
as providing better individual care quality, and by flowpatterning
most such questions will only be asked regarding a small proportion
of expectant mothers.
F4. I now suggest that these 500 items be
given priority, both in a process of detailed review and comment
by all interested parties, and then to become mandatory in future
purchases or upgrades of all UK maternity computer systems.
RECOMMENDATION
G1. I would suggest trying to repeat what
I have now already achieved would not be necessary.
G2. Instead:
a) the maternity data resource documentation
which I have already created should continue to be widely distributed
to all interested parties for quality assessment;
b) the criteria for selection should be more
widely debated; and
c) some authority should be given to the
proposed priority to the Pateint Encounter Assistance Maternity
EPR Dataset.
G3. As soon as possible all those intending
to purchase maternity computer systems should be encouraged to
insist that their local EPR includes the proposed standard national
maternity EPR dataset, and that existing systems should be encouraged
to revise their dataset towards the same standard.
2. MATERNITY
CARE TEAMWORK
H1. Sadly, as the result of many factors,
obstetric care is now so fragmented that all attempts to restore
past patterns are both innappropriate and unachievable.
H2. Unfortunately the severity of inevitable
changes in the pattern of care which are urgently required are
so drastic that there has been far too little discussion of the
kind of radical concepts which might provide the best way forward
from our present dangerous deterioration in medical cover. But
how can we expect to make any progress unless we have greater
freedom to explore the unthinkable?
I would suggest that the following principles
should underlie our future direction.
IN HOSPITAL
EMERGENCY CARE
(NOT JUST
LABOUR WARD)
I1. It cannot be repeated too often that
those receiving maternity care (and indeed emergency gynaecological
care also) deserve and should be provided with a trained "specialist"
doctor (or in future consultant midwife/nurse?) at all times,
day or night. The "baton bleep" should invariably be
the responsibility of a trained specialist not a trainee. It
is now insufficient for there to be consultant "cover"
from a nearby office for only a few hours per consultant per week.
(See Supplementary Material F.)
I2. If it takes five years (eg from age
25 to 30) to be trained as specialist—able to cope with
95% of all emergencies; and if a specialist remains a specialist
for an average of 30 years (age 30-60) then a simple calculation
indicates that there should be on average only one trainee for
every six specialists. Until relatively recently each consultant
has instead, on average, felt entitled to up to one registrar
and one SHO, a ratio of up to 12 trainees for every six consultants.
(ie up to 12 times more trainees than a balanced system would
required) The ratio is slowly changing but at the rate achieved
over the past five years it will be another 65 years before we
reach an ethical ratio.
I3. It is neither ethical nor viable to
try to maintain the traditional NHS pattern whereby the emergency
nightwork has been done by trainees who had very little hope at
all of becoming consultants and who in the past either "fell
off the ladder" and became GPs, or returned to the developing
world, to spend their remaining career doing private practice
in big cities.
I4. It is not reasonable or ethical for
someone over the age of 45-50 to be forced for financial reasons
to do the night shifts on a regular basis.
I5. It is even more immoral to continue
(as is currently happening) to appoint scores of third world doctors
as "Staff Grades" to do all the emergency night work
without working out what they will be doing when they reach the
age of 50.
I6. The only reasonable answer to this is
for most of the night time emergency work to be done by younger
"specialists" and for older "specialists"
to contribute to emergency care throughout their career mainly
by being expected to provide emergency cover during the day.
I7. This concept is more fully worked out
in the discussion document which, at the invitation of our then
President Professor Robert Shaw, I presented to the RCOG Manpower
Committee in January 2000. (Supplementary Material G.)
RECOMMENDATION
J1. In the light of the above, I would suggest
that the final goal for the staffing structure of hospital maternity
care teams in the future in district general hospitals should
be as follows:
J2. Five Maternity & Gynaecology Teams
in each district hospital.
As a small group of mutually dependent individuals,
each team should be totally responsible (even contracted) for
providing all the acute medical care necessary for all maternity
and gynaecological emergencies for one full day (24 hours) per
week and one weekend in five. Patients admitted as an emergency
would of course remain the responsibility of that team.
J3. In our multi-disciplinary world, each
team should probably consist of the following: One older specialist,
one younger specialist, one trainee, one or two specialist midwifes
and one specialist nurse.
J4. The older specialist should be responsible
for emergency cover during the days except when the younger was
on leave and visa versa. The baton pager would always be carried
by one of the trained specialists and never by a trainee.
J5. All leave would have to be covered
internally by that team.
J6. Depending on the size of the hospital
the workload might prove too much for this size of team. If so
then there could be an increase in the numbers. Both research
and common sense would seems to suggest that such teams work best
when they have no more than eight members each of whom feel a
mutual loyalty to other members of the team.
ANTE-NATAL
AND POST-NATAL
CARE TEAMS
K1. Despite the exceptional results have
been achieved by some groups of midwives it sadly seems unlikely
that continuity of carer throughout the pregnancy and birth will
ever be achievable for more than a minority of women in Britain.
K2. It is also, to me, regretful than the
efforts expended in trying to achieve that kind of teamwork has
led to a neglect of progress towards what should be much more
practical and achievable.
K3. At present consultant based "shared"
antenatal care is almost totally fragmented with relatively rare
attempts to develop multi-disciplinary teams. Apart from those
with medical problems, which consultant provides cover for which
expectant mother too often occurs without any rational pattern.
The result is that in too many hospitals every community midwife
and every GP works randomly with every consultant and there cannot
be any real team work.
RECOMMENDATION
L1. It should be nationally recommended
that community midwives should always work in teams covering a
particular part of the district and that each such team would
always liaise closely with a particular multi-disciplinary hospital
team. This hospital team would also hopefully be one that provides
community based hospital clinics in that part of the district.
The result would be that the majority of pregnant women would
have the benefit of a much more closely integrated smaller and
multi-discipined group of health professionals.
L2. For many years I took responsibility
for providing obstetric back-up for the midwifery team in the
north western sector of Milton Keynes and held clinics in four
different health centres in that part of town. Despite at times
strong pressure to withdraw into the hospital I managed never
to have a regular hospital based antenatal clinic in my whole
time as a consultant here. This was not just because I believed
in the principle of community clinics for the sake of mothers
but even more because, whatever one's good intentions, hospital
based clinics almost automatically undermine any possibility of
good teamwork with a a reasonably limited number of midwifery
and GP colleagues. As a result of my clinics being community
based I found myself working as a team with about five community
midwives and about 30 GPs all of whom I got to know well.
L3. Unfortunately, as long as the main power
of referal and organisation is controlled by GPs and consultants
the present fragmented pattern is unlikely to change. However,
if it becomes more firmly established that, for the antenatal
and postnatal care of every expectant mother, the community midwife
must always be the true "lead professional" (and never
the GP or the distant consultant) and if, as a result the community
midwife is the one who decides which hospital consultant to refer
her case to, then and only then will there be more hope of ante-natal
and post-natal care by a readonably sized multi-disciplinary team
consisting of a small group of health centres, a small team of
midwives and a small hospital team as described above.
APPENDICES
1. Datasets relevant to Maternity &
Neonatal Care.
2. Sample page from "Fawdry's Maternity
and Neonatal EPR Data Resource".
SUPPLEMENTARY MATERIAL
A. "Why am I so disillusioned"
and "What can be done easily to rescue the project."
(May 2000).
B. "Why has the Maternity Care Data
Project failed and what can we learn?" (February 2003).
C. "The Workload and Cost of Electronic
Patient Record (EPR) Data Entry —Using assessments of the
workload and cost of data entry in the selection of data items
for Maternity Electronic Patient Records (April 2002).
D. Fawdry's Maternity and Neonatal EPR Data
Resource—Questions only with a Rough Estimate of Annual
UK Additional Midwifery Workload & Cost for each item (February
2003).
E. "Start with the Fawdry 500"
maternity EPR dataset (February 2003).
F. Letter to BMJ with commentary (July 1999).
G. Submission to the RCOG on Staffing in
O & G (March 2000).
ALSO AVAILABLE
IF REQUIRED
I. Full Copy of "Fawdry's Maternity
and Neonatal EPR Data Resource" (February 2003).
II. Chronological based reorganisation of
all the data items included in the Maternity Care Data Project—Data
Dictionary (June 2001).
III. Quality Assessment of the Maternity
Care Data Project—Data Dictionary (November 2001).
| 
