BMJ No 7099 Volume 314
Education and debate Saturday 5 July 1997
Managed care
Disease management
David J Hunter, Gillian FairfieldThis is the last in a series of three articles aiming to raise understanding of the issues surrounding managed care
Summary
The disease management approach to patient care seeks to coordinate resources across the healthcare delivery system. The growing interest in evidence based medicine and outcomes, and a commitment to integrated care across the primary, secondary, and community care sectors, all contribute to making disease management an attractive idea. A combination of patient education, provider use of practice guidelines, appropriate consultation, and supplies of drugs and ancillary services all come together in the disease management process. But its effectiveness is largely untested, so evaluation is essential.
Introduction
Disease management is often regarded as one of the ways of achieving managed care, but it can also be viewed as a stand alone mechanism aimed at improving the cost effectiveness of care. Clinical pathways and integrated care packages are other terms used to describe a disease management approach. Examples of how a good disease management programme would work for a patient with diabetes mellitus is shown in the case history given in boxes throughout the paper.
What is disease management?
Disease management views patients as entities experiencing the clinical course of a disease, rather than viewing their care as a series of discrete episodes or as fragmentary encounters with different parts of the healthcare system. It has three parts:
 | A knowledge base that quantifies the economic structure of a disease and includes guidelines covering the care to be provided, by whom, and in what setting for each part of the process; | |
| A care delivery system without traditional boundaries between medical specialties and institutions; and | |
| A continuous improvement process which develops and refines the knowledge base, guidelines and delivery system.(1) |
It is a structured systems response to a set of problems which are evident to some degree in all health- care systems. These include a fragmented and uncoordinated set of arrangements for delivering care, a strong bias towards acute treatment, a neglect of preventive care, and inappropriate treatment. In an attempt to overcome some of these problems, disease management is outcomes led. This is its major strength and its major weakness. The weakness lies in our incomplete knowledge base. For many conditions there is no consensus about outcomes, or whose outcomes should prevail - those of professionals or patients.
For which diseases is a managed approach suitable?
Disease management is most suitable for the diseases about which most is known, for which it is easy to develop disease protocols that are evidence based, and in which it is possible to measure outcomes. The most typical disease favoured for this approach is diabetes, followed by heart disease and cancer. Stroke, asthma, mental health (including depression), prostate disease, and dermatological diseases are also often candidates. Angina, AIDS, cystic fibrosis, hypertension, renal dialysis, substance misuse, and peptic ulcers are less commonly managed. Senior NHS managers surveyed in 1995 said that the principal reasons for choosing diseases are a high local incidence of disease; the need for integrated guidelines and systems in primary and secondary shared care; the high cost of treatment; a requirement to improve guidelines; the lack of certainty in best practice; and the need to improve patient outcomes.(2)
The spectrum of disease management extends from health promotion and
disease prevention, through diagnosis, treatment, and rehabilitation,
to long term care. No published research has explicitly evaluated
disease management programmes.(3) The claims for disease
management made in most papers have not been tested empirically, and
research has been confined to hospital based interventions. This tends
to undermine the population based approach which is central to the
disease management phil To an extent, disease management is little more than a marketing
or packaging device whereby familiar and often long standing concepts
are combined into a single philosophy or approach and offered as a
complete package. The success of a disease management programme depends
on several factors: committed managers, an organisation prepared and
willing to take this route, a structured process of change management,
a structured approach to analysis, a well developed performance
management system - with the patient at the centre of the process.
The purpose of the programme must be clear at the outset, and the
organisational structure within which the programme will operate must
be established. The skills and resources required must be identified,
as well as the diseases to be managed. Links and alliances must be in
place at the outset and everyone involved in the process must
understand what is going on. It is also vital to review the evidence
for each disease in order to ascertain what is known about the disease
in each sector of care. Each disease should be broken down into its
constituent elements and protocols produced for each stage. How
outcomes are to be measured for each stage of the disease and across
all the stages must be determined. Finally, the whole process
should be piloted and independently evaluated.
In many respects, disease management should be seen as a learning
process. It is likely to advance incrementally through a process of
iteration and revision (fig
1).(4)
As with any major change, top managers have to be seen to be
taking a lead. But without the ownership and commitment of staff, any
new developments will quickly fail or become distorted. Good
communication is critical to the success of disease man Preparing for the change process requires analysis and an objective
assessment at the outset of what the problem is and how it might be
tackled. Putting the patient at the centre of the process allows
bottlenecks and problems of coordination to be identified. Finding
solutions to some of these obstacles and blockages may entail radical
change - for example, it may be necessary to address poor patient
preparation, inappropriate staffing, and work planning routines, none
of which are new to the NHS or to its managers, but unless these
problems are confronted and resolved, disease management will not
succeed.
Disease management programmes depend on a diverse set of skills
and tools.(6)
Knowledge base - Up to date information about disease in
terms of epidemiology screening, prevention, pathology, and treatment
options is clearly ess
Outcomes research - In many ways outcomes research is the
raison d'Írtre of disease management. It means measuring quality,
service or satisfaction, and cost outcomes for any course of treatment,
and disseminating this information to develop clinical guidelines and
protocols. But this poses a dilemma. Few systems based outcomes data
are available, and even when they are, changing clinicians' behaviour
will demand management skills of the highest order. Some managers are
attracted to the idea of partnerships or joint ventures with
pharmaceutical companies that believe they possess these
skills.(7)
Information systems - Disease management needs all
stakeholders to have access to integrated information so they can all
understand treatment options, long term costs, and outcomes. Collecting
and sharing data must be a priority - currently, information is often
unreliable and inaccessible.
Tools for influencing behaviour - Effective, successful
integrated health care systems require stakeholders to change their
behaviour. For instance, providers will need to respond to clinical
practice guidelines - and provide good reasons if they are not prepared
to follow them - and patients will need to take compliance more
seriously. Some pharmaceutical companies believe they can contribute by
influencing the behaviour of patients and providers through educational
programmes and other devices.
Continuous quality improvement - Measuring performance
against accepted benchmarks will allow the system to be continually
refined through regular ev
Ability to share and manage financial risk - With
stakeholders collaborating in new ways to care for patients, there will
be a different distribution of risk, and incentive structures will need
to ensure that all stakeholders are working for the same ends.
Obstacles include the lack of useful information on the health status
of populations in local areas and the difficulty of assigning diseases
which have a number of sequelae and comorbidities into specific patient
pools (eg diabetes, asthma) and of calculating the expected risk and
financial liability.
There are two further critical elements of a disease management
approach. It demands a long term perspective, but results are focused
on short term gains and improvement - and although there should be a
focus on values rather than cost, the danger is that in practice this
will be reversed. Cost data are more reliable than data on quality, and
most information systems are designed around financial rather than
clinical outcomes. However, the price for focusing on costs will be to
alienate the essential support from clinicians, who are likely to be
motivated by quality improvement and service development rather than
cost control.
The three main stakeholder groups in a disease management approach
are the health system, clinicians, and patients. In the survey
mentioned earlier, respondents listed what they thought were the
benefits and disadvantages for each of these groups (see box). Over and
above the perceived disadvantages, there seem to be three principal
barriers to its introduction: a lack of clarity about how disease
management will tie in with NHS structures, in particular the separate
budgets in primary and secondary care and social care; possible
professional resistance to change; and an absence of clinical
information systems.
Benefits:
Benefits: Unless the tie-in with NHS structures is sorted out, there is a danger
of establishing initiatives that counter the values and strategic aims
of the NHS. The present structural and budgetary divisions are likely
to lead to a lack of incentives for integrated and seamless care and
for scrutinising the quality of clinical care provided. Moreover,
unless rigorous evaluation is built in from the outset there is the
risk of failure to learn from the experiences of others.
The litmus test for a successful disease management programme will be
the extent to which the patient's interests are given primacy and then
met. But there remains an issue over whether the focus is, or should
be, on individual patients or whole populations of patients. Another
concern is the doctor-patient relationship. Many fear that disease
management might constrain the freedom of choice.
Professional resistance to change may be overcome only if doctors
themselves drive, or feel as if they are driving, disease
management.(8) Clinicians need to be convinced that the
disease management approach will heighten their professionalism because
it entails adopting best practice.
Within the NHS, disease management comes up against the classic
demarcation between primary and secondary care. But diseases span all
these services and are no respecters of boundaries. Given the focus on
a primary care-led NHS, it is worth asking the question as to whether
primary care is capable of taking on the extra load of disease
management.
An integrated healthcare system will require long term alliances to be
established between primary and secondary care which will, in turn,
require improved information, information sharing, and collaborative
working. None of this will occur quickly and all the changes will have
implications for training and development. It will also be a key
challenge for managers to avoid unacceptable variations across the
country and to try and ensure reasonably consistent and equitable
progress.
The NHS Executive's 1994 guidance on disease management was
negative about the prospect of the NHS doing deals with the private
sector, especially the pharmaceutical industry. (9) But the
revised guidance which was to have been issued some months ago but got
delayed by the election, will take a slightly more liberal
approach.(10) The discussion paper which preceded the final
guidance focused on the area which has generated most political
concern, namely, the desire for joint disease management ventures
between the NHS and private sector companies. According to this
document, the government "neither encourages nor discourages such
ventures."
In its guidance, the government is concerned to respond to the interest
which has been generated by overtures to the NHS from the private
sector and sets out some safeguards to help the NHS to assess
individual proposals for joint management before deciding whether to
enter into them. A possible framework is provided to help NHS
purchasers assess locally the merits and risks of individual schemes
and help them to decide whether to enter into disease management
agreements.
Disease management will improve the delivery of care if its
limitations are honestly acknowledged and it has the full support of
clinicians and others to drive quality and improve outcomes. It
represents good practice and common sense in the provision of effective
care - but it will only be as successful as the robustness of its
evidence base and the calibre of its managers. It is not a panacea. But
the inherent reasonableness and common sense of the approach, and the
growing frustration with a health system that is becoming more
fragmented and compartmentalised, points to an enhanced role for
disease oriented approaches in future.
Over the next two weeks the diabetes nurse visits Jane
at home to monitor Jane's progress and contacts the practice nurse,
who helps administer the monthly diabetic clinic at the practice's
surgery. Jane's school is contacted to reassure the teachers that Jane
can take part in all normal activities and to provide them with
information about diabetes. The primary and secondary care teams are in
close contact. Jane leaves home and moves in with her boyfriend. At her
next clinic visit she is found to have microalbuminuria (confirmed on
three occasions). Despite her normal blood pressure she is about to be
given an angiotensin converting enzyme inhibitor, according to the
protocol developed in conjunction with the renal team; then it
transpires that she had stopped taking oral contraceptives three months
previously due to a "pill scare." A pregnancy test is positive. She
had received preconception advice six months earlier, as set out in the
agreed guidelines, but at that time she had not been sexually active. Jane's diabetes continues to be monitored in
agreement with shared care protocols. Over the long term, care is well
coordinated by the primary care team. Jane is well informed and feels
involved, in control, and an equal partner in her own care. All those
involved in Jane's care feel happy that they are delivering a patient
centred, cost effective service and that Jane is a success story. This
is reflected in her biomedical, psychological, and social outcomes. The
overall local population outcomes and the health team's performance
indicators are also satisfactory. It is, however, acknowledged that
while Jane is a success story the disease management approach cannot be
guaranteed effective for every individual.
We thank Dr S Gilbey of St James's University Teaching
Hospital, Leeds, for help with the case history.
Nuffield Institute for
Health,
Correspondence to: Professor
Hunter.
References
1 Dellby V. Drastically improving health care with focus on
managing the patient with a disease: the macro and micro perspective.
Int J Health Care Quality Assurance 1996;9(2):4-8.
2 IBM Pharmaceutical Consultancy and Shire Hall Communications.
Disease management and the NHS: a guide for potential partners.
London: Shire Hall Communications, 1995.
3 Hunter D, Fairfield G. Managers' checklist: disease
management. Health Services Journal 1996;106(suppl
7):11-2.
4 Rosleff F, Lister G. European healthcare trends:
towards managed care in Europe. London: Coopers and Lybrand,
1995.
5 Hollamby R. Disease management: is it contagious?
European Hospital Management 1995;2(3):20-2.
6 Wilkerson Group. Integrated health care: pharmaceutical
company roles in a seamless system of patient care. New York:
Wilkerson Group, 1995.
7 Lawrence M, Williams T. Managed care and disease management in
the NHS. BMJ 1996;313:125-6.
8 Fairfield G, Hunter D J, Mechanic D, Rosleff F. Managed care:
origins, principles, and evolution. BMJ 1997;314:1823.
9 NHS Executive. Commercial approaches for the NHS
regarding disease management packages. Leeds: NHSE, 1994.
(Executive letter EL(94)94.)
10 NHS Executive. Partnerships with industry for disease
management: general approach. Leeds: NHS Executive, 1996.
(Discussion paper.)
Setting up a disease management programme
Knowledge base or baseline
Goals and targets
Development of practice guidelines
Communication of guidelines
Behaviour modification
Redesign of clinical processes
Analysis of outcomes measurement
Interventions Fig 1 Disease management process
Features of successful disease management
Patient centred and outcome focused Objective and evidence based, to ensure credibility and acceptance
Flexible and pragmatic, to account for normal variations and
uncertainties in medical practice at patient level
Dynamic, to enable evolution and durability
Based on what happens in the real world and not on what ought to be
happening
Designed to minimise difficulties and maximise benefits
Framework for assessing merits of joint ventures in disease
management
Patient issues - patients' interests should be paramount Ethical issues - there should be no conflict with ethical requirements
of practitioners to provide whatever treatment they consider clinically
necessary for an individual patient
Protection and use of patient information
Legal issues - NHS parties should satisfy themselves as to the legality
of any proposed venture
Transparency and accountability - services specified in a joint venture
should be published and NHS parties held accountable for them
Finance issues - joint ventures should represent value for money to the
NHS
Evaluation - joint venture schemes should include arrangements for
monitoring and evaluation Skills and tools needed for disease management
Pros and cons of disease management
Pros and cons of disease management for key stakeholders
Health system
Better outcomes
Introduction of best practices
Outcome measurement
Cost effectiveness
Consistency of treatment
Improved allocation of
resources
Improved systems overall
Greater
cooperation between the parts of the system
Seamless
care
Less stressful for professionals
involved
Disadvantages:
May
cost more
Takes time and commits start up
resources
Upheaval while being introduced
May be
difficult to win over staff
Difficult to change once
established
Could be a passing fashion
Could introduce
rigidities and block
innovation
Clinicians
Benefits:
Opportunity to work effectively and collaboratively
Good,
stable relationships with others
Good access to
information
Increased professionalism
Disadvantages:
Threat
to clinical freedom
Reduction in status
Under closer
managerial supervision
Conflict of interest between demands of
patient and protocol
Changes the dynamics of doctor-patient
relationship and the trust underpinning
it
Patients
Better outcomes
More informed patients
Greater
involvement
Continuity and consistency of care
NHS
more patient centred
Preventive treatment
May speed up
treatment
Guidelines are patient
driven
Disadvantages:
Restriction of
treatment
May perceive some treatment to be
unnecessary
Increased responsibility and decisions which they
would rather not shoulder The government's approach
Conclusion
A diagnosis of diabetes mellitus
Jane, aged 12 years, presents to her general practitioner with
polyuria, polydipsia, and weight loss. The doctor makes a rapid
diagnosis of diabetes mellitus and refers her to the diabetes centre in
line with locally agreed guidelines. The next day Jane attends the
diabetic centre with her mother. The consultant diabetologist
recommends an insulin regimen and introduces Jane to the diabetic
specialist nurse, who teaches her how to inject herself using a pen
device and how to monitor her blood glucose. Jane is introduced to the
diabetes dietician and watches a video on diabetes supplied by a
pharmaceutical company, which is accompanied by a helpful information
pack on compliance with treatment. The diabetic team discuss the
symptoms and management of diabetes with Jane, and targets for her self
care are developed. She is given her patient held record as well as
patient information packs, including patient guidelines appropriate to
her age.
A pregnancy test is positive Jane adjusts well; she seems well motivated and is seen at the
surgery once a month by the practice nurse and at three monthly
intervals at the diabetic centre. Once a year she has a full
assessment, including funduscopy, and also sees a chiropodist.
Everything seems to be going well until, four years after diagnosis,
the primary care information systems pick up that Jane (who is now 16)
has missed an appointment. A further appointment is sent but also not
attended. The practice nurse visits Jane at home and after discussion
enlists the help of the clinical psychologist at the diabetic centre,
who establishes a rapport with Jane to the benefit of her diabetic
control.
Mother and baby do well
Jane is happy to be pregnant. She attends the diabetic
antenatal clinic where she sees the multidisciplinary team, which
includes a diabetologist, obstetrician, midwife, diabetes specialist
nurse, and dietician. Her diabetes control is good due largely to the
home visits of the diabetic specialist nurse and the practice nurse,
who Jane trusts. At 24 weeks a routine check discovers retinal changes
and Jane is seen by the ophthalmology team. Her blood pressure becomes
difficult to control and her baby fails to thrive. At 37 weeks the baby
is delivered by caesarean section. Mother and baby do well and are
discharged into a flat found for her through the intervention of the
social worker.
University of Leeds,
Leeds LS2 9PL
David J Hunter,
director
Gillian Fairfield,
senior registrar in public health
medicine
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