FEATURES

bmj.com Analysis • NHS in the age of anxiety: rhetoric and reality—an essay by Rudolf Klein (BMJ 2013;347:f5104)

HOSPITALS WITHOUT WALLS

A new report from the Royal College of Physicians suggests a radical approach to the problem of
providing continuity of care for modern patients. Nigel Hawkes examines the details

N
othing galvanises a community so sation and improved outcomes but at the cost of ership options for generalists. It envisages hos-
much as a threat to its hospital. For fragmenting services and trapping patients inap- pitals organised on a “hub and spoke” pattern,
better or worse, hospitals embody propriately in locations where it is hard to meet with an acute care hub housing a single unified
the reality of the NHS for most peo- all their needs. Targets such as the four hour wait medical division that will assume responsibility
ple in a way that general practice, in emergency departments can often result in for the care of all patients (except for paediatrics,
let alone community care, cannot match. They patients being moved to a ward, any ward, as the obstetrics, and possibly some specialised surgi-
are as important to a local sense of wellbeing as limit approaches, rather than to the right ward— cal wards). The medical division would be run
churches used to be, and defended with all the delaying specialist opinion and increasing length by a chief of medicine, an experienced physician
fervour that once filled those empty pews. Yet of stay. The payment system in the English NHS who would assume budgetary and administra-
hospitals are not the solution but the problem, has caused an overemphasis on elective rather tive responsibility for care in the hospital and the
according to a new report from the Royal Col- than acute care, while the purchaser-provider community, using pooled budgets. The chief of
lege of Physicians (RCP). “Conventional models split has, says the report, undermined joined up medicine would report professionally to the hos-
of health service design in which a hospital site working between secondary and primary care. pital’s medical director and operationally to the
is the sole focus for the delivery of emergency, chief executive.
acute and elective services are dated,” it says.1 Rise of the generalist “Working with a shared culture and objectives
They cannot provide the integration, collabora- The report believes that the future hospital will across all medical speciality teams, the chief of
tion, communication, and information sharing need more generalists and fewer specialists. It medicine will motivate staff to provide care of
needed to care for today’s typical patients, who says: “The expectation that most physicians will the highest quality to patients, irrespective of
are elderly, multiply morbid, dependent, and become highly specialised in a narrow field must their work base—hospital, community—or area
often confused. The circumstances that made be changed.” of clinical practice, in line with the NHS Consti-
the hospital the icon of care have changed, but Nigel Edwards, senior fellow at the King’s tution and professional standards,” the report
the hospital has not changed with them. Fund, agrees but asks, “Who’s been responsible says.
The RCP’s Future Hospital project is a bold for overall growth of specialties? The RCP has Care would be coordinated from what sounds
attempt to envisage a new role for the hospital. said before that we need more generalists, but I like a war room: the report calls it a clinical coor-
It is one in which physical and mental barriers haven’t noticed we’ve produced them.” dination centre. Twice a day, seven days a week,
dissolve: the walls that trap clinicians inside Recruiting doctors to a generalist role (in either clinical teams would meet here to coordinate
buildings and within professional silos are elim- acute or general internal medicine) is increas- care in the hospital and in the community for
inated. Care is delivered where patients’ needs ingly difficult, the report admits. The workload of their patients. Displays would show electronic
can best be met, by medical teams Care would be medical registrars is heavy; a quar- patient records (the failure to share these records
working with professionals from
coordinated from ter of them describe it as unmanage- so far is “incomprehensible,” the report says)
primary and social care. Expertise able. Most feel a lack of leadership, together with standard clinical referral, diagnos-
is available seven days a week, both
what sounds like with nobody to report problems to. tic, and management protocols for all common
in hospitals and in the community. a war room Yet these doctors make the key deci- patient groups.
In the report’s words: “The overriding objective sions about new hospital admissions: which spe- Other displays would show in real time
should be continuity of care for patients, coor- cialties patients should be referred to, their care where patients are, together with information
dinated and delivered by a single consultant-led pathway, and their discharge. “It’s an extremely about their admission, discharge, and transfer
clinical team.” The hospital ceases to be “some- crucial job and it requires skills every bit as great of care, as well as data on community services
where”; it becomes everywhere. as any specialist,” says Edwards. “But there’s and bed capacity in interim or care homes. Moni-
“We went through the report removing the no private income option and the workload is tors would show inpatients’ vital signs, enabling
word discharge wherever we could,” says Profes- heavy.” He argues that clinicians who do the job untoward events or near misses to be identified
sor Timothy Evans, who chaired the RCP group should be paid “extremely well,” with an exit early. Telephone and email helplines for patients
that produced it. “What our patients want is strategy into other roles such as management in and professionals would be staffed seven days
continuity of care, wherever they are.” Maybe, their mid-40s before burnout strikes. a week, linked to primary care, so that, as the
he added, some GPs will find the implication report puts it, “responsibility for care will thus
that they are not already providing such care New model of care be shared between patients and practitioners in
inflammatory—“but I hope not.” The report says general internal medicine should hospitals and primary care, and continuously
The RCP’s vision runs counter to many pre- be promoted as a valuable and attractive career supported by a virtual dialogue.”
vailing pressures. The intense focus on the option but does not say exactly how. Its vision There isn’t a hospital in the NHS that works
treatment of specific conditions, such as heart of future hospital services would, however, go like this nor, Evans believes, any international
disease, stroke, and cancer, has driven speciali- some way towards supplying career and lead- example either. He acknowledges that there

18 BMJ | 14 SEPTEMBER 2013 | VOLUME 347


RCP vision for future care
Care should come to the patient, not the patient
to care
Patients should not be moved unless it is
absolutely necessary for their care
Patients should not be “discharged”—care
should be seamless in and out of hospital
Care should be provided seven days a week, with
a named consultant in charge
Hospitals should establish a medical division,
under a chief of medicine, with responsibilities
that extend into the community
More generalist physicians will be needed to
manage patients both in hospital and in the
community
Care will be run from a clinical coordination
centre, which will act as a central control room
with a “chief resident” responsible for planning
the design and delivery of services, including
rotas
Payment systems such as payment by results and
the purchaser-provider split should be reviewed
to reduce the overemphasis on elective surgery
would have to be changes of function at various
hospitals to accommodate this system of care,
raising the dread word reconfiguration.
Edwards says that those who recommend
hub and spoke models of hospital provision are
always those who will be working in the hub—
while those relegated to the spokes, which stand
to lose some services, may be less enthusiastic.
“The risk is that the moment you can’t run acute
medicine in the spokes, the requirement to find
space in the hub is huge,” he warns. “But it
depends what you mean by spoke.” He says
there are examples, such as Heart of England
NHS Foundation Trust, that he believes have
made it work.
Evans’s response to this is to say that there
won’t be such a clear distinction between hub
and spoke. “We’re all going to be in the spoke,”
he says. “It’s hard to think of an example, except
possibly intensive care, where more commu-
nity care couldn’t be delivered.” And he says
that there is no intention of imposing the same
model everywhere. ”One size doesn’t fit all,” he
says. “You can’t close a hospital in East Anglia if
there’s only one there.”
What about surgeons?
Some surgeons may cavil at the diminished role
they occupy in the RCP’s new vision. Once the
surgeon has operated, most of the problems
today’s elderly patients face are medical, not
surgical, the report argues. Patients on surgi-
cal wards should be under dual supervision
of physicians and surgeons. “Consultant sur-
geons may provide a more consultative service
BMJ | 14 SEPTEMBER 2013 | VOLUME 347
The report favours a “hub and spoke” model of care
based on technical aspects of the surgery and
post-operative complications,” the report says,
adding, “This arrangement will have major
implications for surgical trainees—with all but
the more senior trainees redeployed to physi-
cian-supervised duties and realigned to medi-
cal training programmes.” The message is clear:
surgeons should be on tap but not on top.
Norman Williams, president of the Royal
College of Surgeons, bridles slightly at the
implications of this. “Surgeons are more than
technicians,” he says. “I think it would be
extremely dangerous to leave all postopera-
tive care to physicians. Time and again juniors
think postoperative problems are medical but
an experienced surgeon can often see they’re
not.” He cites the example of urinary symptoms
after colon surgery, which could be infections
but could equally be the results of bladder dam-
age. That said, he adds that in treating fractured
neck of femur, close cooperation postoperatively
between surgeons and physicians had produced
fantastic results. “But that’s a very specific
case—other specialties are different.”
Funding questions
The report is largely silent on where the money
would come from or, indeed, how much the plan
would cost. That’s a future project in a continu-
ing programme of work, Evans says. Some would
come from shifting the emphasis for elective care
to acute and emergency care—which has been
“chronically underfunded” according to the
report—but that would need reform of payment
by results, which tends systematically to under-
FEATURES
estimate the costs of acute care. Providers have
expanded elective care because the price per
unit is strong and largely volume based, while
acute care is usually part of a block arrangement.
“It is crucial that these funding anomalies are
resolved,” the report argues.
Williams, who chairs the Academy of Medical
Royal College’s working party on seven day care
and was a member of the steering group for the
RCP report, agrees that there needs to be a switch
of emphasis away from elective targets. “Every-
body recognises that,” he says. “The problem is
that if we concentrate more on emergency and
acute work, keep the same staffing, and don’t
reconfigure while having consultants working
more at weekends, then that will affect elec-
tives.” Like the report itself, he is unsure where
the money is coming from to make these changes
possible, but he agrees they are necessary.
“Many of the recommendations it makes are
very important and we support most of them,”
he says. “It’s ambitious, but that’s appropriate,
too. We all agree that the patient should be at the
heart of the care we deliver and if you’re a patient
you don’t have any doubt that 24/7 working is the
way. But we’ll need to get there in stages, and with
the best will in the world, it’ll take some time.”
Nigel Hawkes freelance journalist, London, UK
nigel.hawkes1@btinternet.com
Competing interests: None declared.
Provenance and peer review: Commissioned; not externally
peer reviewed.
References are in the version on bmj.com.
Cite this as: BMJ 2013;347:f5479
 NEWS, p 1; EDITORIAL, p 7
19
PATIENT DATA
bmj.com
 Features: Sharing data from clinical trials: where we are and what lies ahead
(BMJ 2013:347:f4794)
 Campaign: The BMJ Open Data Campaign www.bmj.com/open-data
MEDICAL DATA
Does patient
privacy trump
access for research?
Patient data are powerful tools for medical research, but, as
Adrian O’Dowd reports, plans to increase access are raising
questions about how to ensure privacy
A
national drive to gather and store
more information on patients—both
medical and genomic—is under way.
At the same time, researchers are on
the brink of accessing individual
patient data from the vaults of drug companies’
clinical trial records. But with this fundamental
shift comes a new concern: how can we make
best use of individual patient data without
impinging on privacy? In the wider world,
recent cybersurveillance scandals have led to
a new nervousness about privacy. For patients
the concerns are that their privacy is protected
and that data are not used inappropriately or
mischievously for the wrong reasons.
All three potential sources of medical data
for research in the UK—a data service provid-
ing patient records from general practices and
hospitals, data from clinical trials, and an NHS
DNA database built from patients’ genomic
information—are proving controversial.
Researchers currently get data from patient
records mainly through the clinical patient
research datalink (CPRD). The electronic health
records given over are anonymised—patients’
names and dates of birth are removed and post-
codes are obfuscated. Ben Goldacre, author and
research fellow in epidemiology at the London
School of Hygiene and Tropical Medicine, says:
“In my day job I work partly on CPRD data—full
electronic health records of every blood test,
every prescription, every diagnosis—for obser-
vational epidemiology.
20
“Recently people have got a little bit worried
about the government saying that it is going to
exploit NHS electronic health records as a way
of making money by selling them to industry to
do research on.
“But the GP research database has been
around for a couple of decades and, quite cor-
rectly, we sell that information to drug compa-
nies who use it to do observational epidemiology
research into potential risk signals.”
In August, NHS England announced it was
commissioning the Health and Social Care
Information Centre to run the care.data service,
which is designed to make better use of the
information in general practice patient records,
including data such as referrals and NHS pre-
scriptions. Data from general practice will be
linked to Hospital Episode Statistics, thereby
transforming it into the Care Episodes Service.
The information centre has worked with the
BMA and the Royal College of General Practition-
ers to produce information materials and guid-
ance, including for GPs,1 to support practices
and raise awareness among doctors and patients.
Patients who are not happy for their data to be
used in this way can ask their general practice to
note this in their medical record and can opt out.
Sam Smith, a technology adviser for cam-
paigning organisation Privacy International,
says: “I think patients are happy for their medi-
cal data from general patient records to be used
by bona fide academic researchers in a university
if they are asked.
“There will be a very small percentage who
will object, but the vast majority, if they know
what it’s going to be used for—ie, legitimate
research for the benefit of humanity—will not.”
However, he is concerned about the public’s
lack of knowledge about NHS England’s plans
for care.data: “It’s down to communication and
the opt-out. Patients are entitled to opt out,
but it’s being buried. NHS England, in the first
place, did not want the opt-out at all.
“NHS England talks about a digital NHS and
that lots of things will be on the web and you
can download your medical history, but the
posters and the leaflets for care.data contain
no URLs. They suggest you talk to the recep-
tionist about how we use your medical records.
There are some GPs that are actively telling their
patients about care.data but most won’t.”
Genetics
The plans to build a DNA database on
100 000 people for the NHS are also causing
controversy. The pilot database will create a
variant file containing the whole genome of
each person minus the reference genome that
will be attached to the medical record. If the
pilot is successful it will be rolled out to every
person in the NHS in England.
The Human Genomics Strategy Group
report, commissioned by the government
and published last year, says: “Genomic
technologies have the potential to transform
the delivery of healthcare in the UK, provid-
BMJ | 14 SEPTEMBER 2013 | VOLUME 347

TEK IMAGE/SPL
ing vital insights to support more accurate
diagnosis of disease and inform therapeutic
decisions.”2
The report recommended that the Depart-
ment of Health, in partnership with the Depart-
ment for Business, Innovation and Skills and
partners, should establish a central repository
for storing genomic and genetic data with the
capacity to provide biomedical informatics
services.
In addition, there should be agreements
that require data from tests carried out by NHS
commissioned laboratories to be made avail-
able to nationally designed research databases
but ensuring patient confidentiality and data
protection.
GeneWatch UK, a not for profit organisa-
tion that aims to ensure genetic science and
technology are used in the public interest, is
worried the proposals will create privacy prob-
lems. It says such a database could mean that
a person’s employer or a drug company could
be classified as a researcher and thus gain
access to data about people who have had a
workplace related illness or an adverse drug
reaction and work out their identity.
Trial data
A potentially major new source of patient data
is from drug company clinical trials. Pressure
has been building over the past few years for
drug companies to provide more data, includ-
ing from the BMJ’s open data campaign.3
BMJ | 14 SEPTEMBER 2013 | VOLUME 347
Can anybody tell me from an ethical point of view, why the
true effectiveness of a treatment can be outweighed by the
potential that somebody will be identified in that process?
As well as the more general clinical study
reports, researchers also want access to indi-
vidual patient data—information about trial
participants such as blood tests and dates of
hospital admissions.
Goldacre says accessing individual patient
data needs careful consideration: “For clini-
cal study reports with personal data removed,
summary results, and for registration, there is
no ethical argument at all against making all
of that information publicly accessible for all
the trials. For individual patient data, there is
a world of caveats and structures and mecha-
nisms that need to be discussed.”
But Goldacre is clear on the benefits of access
to individual patient data: “When it comes to
sharing individual patient data, there are many
more opportunities. We can try to identify sub-
groups of patients who do better or worse on a
particular treatment and then target our inter-
ventions so that people get treatments that are
likely to do them more good than the general
population.”
When sharing data with researchers, it
should be checked that they are competent to
protect the information and do the analysis, he
says.
Carl Heneghan, professor of evidence based
medicine at the Department of Primary Care
Health Sciences at the University of Oxford,
agrees there are worries about patient privacy
when dealing with clinical study reports and
individual patient data.
“They do contain what people consider
is identifiable data, such as age, sex, and an
event,” he says. “There is a remote possibility
that you could put information together and
work out what was going on, yet I’ve never seen
anybody do that and never seen anybody want
to do that or attempt to.
“If you don’t know all of the data, you can-
not come to a decision about the effectiveness
of treatments and how it’s going to work in clini-
cal practice. If you don’t know all of that, you
shouldn’t be using the treatment.”
GlaxoSmithKline has pledged to make all
its clinical study reports publicly available on
its register and is opening its platform for con-
trolled access to patient level data.
James Shannon, the company’s chief medi-
cal director, says one worry for companies and
academics is that making data more widely
available could mean journalists could trawl
through results and come up with unfair and
sensationalist conclusions.
PATIENT DATA
“There is a concern that data will be used irre-
sponsibly and that’s why we have put in place
the system of review of the protocol or the ques-
tion to be asked such that we look and make
sure that there are statisticians and capable peo-
ple involved in the team who are going to look at
it and interpret it,” says Shannon.
Anonymising patient data properly is not
straightforward, argues Shannon, who says:
“It’s a very important element that whenever we
release clinical trial data, that we respect the pri-
vacy of the patients who participated in the trial.
“We have put in place a system where we
anonymise the data and then we throw away
the code sets so it is theoretically not possible
to go back to the individual.”
The European Medicines Agency is also looking
at this issue and, in June, released its draft policy
on publication and access to clinical trial data.4
Plans within its consultation, which runs
until 30 September, if implemented, will allow
researchers access to patient level data to con-
duct and publish their own re-analyses and
secondary analyses.
Despite the many concerns over patient pri-
vacy, Heneghan says transparency will become
increasingly important.
“We have got an ageing population and peo-
ple with more chronic disease and disability,
and it’s going to cost more money,” he says. “We
have got to save money and we cannot afford
very costly treatments that don’t have much
benefit and don’t declare the full effectiveness
for our healthcare system.”
He believes that the argument is not just
financial but ethical: “Can anybody tell me from
an ethical point of view, why the true effective-
ness of a treatment can be outweighed by the
potential that somebody will be identified in
that process? Are they prepared to let people die
on the basis that somebody may be identified?”
Adrian O’Dowd freelance journalist, London, UK
adrianodowd@hotmail.com
Competing interests: None declared.
Provenance and peer review: Commissioned; not externally
peer reviewed.
1 Health and Social Care Information Centre. Care.data
guide for GP practices. www.england.nhs.uk/wp-content/
uploads/2013/08/cd-guide.pdf.
2 Human Genomics Strategy Group. Building on our
inheritance: genomic technology in healthcare. www.gov.
uk/government/uploads/system/uploads/attachment_
data/file/213705/dh_132382.pdf.
3 BMJ open data campaign. www.bmj.com/open-data.
4 European Medicines Agency. Publication and access to
clinical-trial data. www.ema.europa.eu/docs/en_GB/
document_library/Other/2013/06/WC500144730.pdf.
Cite this as: BMJ 2013;347:f5516
21