Introduction
The comprehensive definition of
health articulated by the World Health Organisation (WHO) and incorporated
into its Constitution in 1946 [1] had a profound impact on the international
understanding of health and disease, informing a wide range of health services
research and development initiatives and giving great momentum to the
prevention and treatment of ill health and to the promotion of positive health
globally [2,3]. WHO’s growing interest in the individualisation of health care
[4] and in a more effective tailoring of care to communities has led to a
series of important resolutions and publications, most recently illustrated,
perhaps, by the 2007 Reports People Centred Health Care [5] and People at
the Centre of Health Care [6], by the 2008 Report Primary Health Care: Now
More Than Ever [7] and, most signally, by the relevant resolutions of the
WHO World Health Assembly in 2009 [8]. As a result of these particular actions
and the impetus provided by the International Network for Person-Centered
Medicine (INPCM), much progress has been made in the articulation and
implementation of person-centered clinical medicine and people-centered public
health in the Developed World [9-12].
But what of the situation in low and middle income
countries? How much progress has been made there and what can be done to
accelerate the development of people and person-centered care in those
geographical areas where resource constraints (as increasingly in high income
countries) and sometimes a resistance to innovation and change (again, as in
the West), militate against the organisation and delivery of efficient and
integrated clinical services? It is precisely these questions which were posed
– and addressed - in a meeting organised as part of the Third Geneva Conference
on Person-Centered Medicine, co-ordinated by the INPCM and held at the
headquarters of the World Health Organisation on 5 May 2010. The presentations
that were made and the discussions that took place were wide ranging and
informative and congratulations are certainly due to Dr. Wim Van Lerberghe, WHO
Director of Health System Governance and Service Delivery and Dr. Carissa
Etienne, Assistant Director General, Health Systems and Services of the WHO,
for their overall direction of the meeting and in coordinating the publication
of the subsequent report People Centred Care in Low and Middle Income Countries
[13]. In this short article, a review of the essence of the WHO Report
[13] is presented to readers of this inaugural edition of the International
Journal of Person-Centered Medicine, with the aim of summarising the
content and conclusions of the Report [13] and offering some suggestions on how
further progress might be achieved.
Tailoring care to Individuals and communities
People-centered care has been
defined in various ways, but common understandings articulate it as a type of
care which is focussed on and organised around given groups of people, rather
than on the disease alone, in isolation from broader concerns. While it is
axiomatic that the scientifically-informed prevention and treatment of disease
remain of fundamental importance, they far from equate to the overall goal
of people-centered care which, rather, aims to address the needs and
expectations of individual people within the context of their communities, so
that family, friends, community, values, knowledge and culture remain of
pivotal conceptual and practical importance. Here, the prioritization of
people’s experiences of their health and illness by health workers are
considered alongside the circumstances of their everyday lives, ensuring that
proper understandings of patients’, families’ and communities’ perspectives and
choices are elicited, heard, respected and employed in the design and delivery
of clinical services. People-centered care is therefore more epidemiological,
rather than directly Hippocratic in nature, but in its practice and for
the reasons given, would incorrectly be identified simply with what has been
described as the impersonal approach of traditional public health
thinking and intervention. On the contrary, properly understood,
people-centered health care and person-centered health care are two concepts
and practices that can be seen to be conceptually and practically
complementary, rather than in any way antagonistic, both representing powerful
approaches to the provision of scientifically informed care within an entirely necessary
humanistic framework [14]. This is precisely how the WHO Report [13], in
accordance with previous WHO publications [3-9], understands their
relationship.
Implementing people-centered care in low and middle-income countries
The pattern of implementation of
people-centered care in low and middle income countries has been varied, with
both ‘top down’ and ‘bottom up’ approaches observed. The so-called ‘top down’
approaches have been characterised by the formulation of national policies with
definitive commitment to implementation from holders of political office and
senior government officials, whereas examples of ‘bottom up’ approaches include
modestly conceived demonstration projects which have then been replicated elsewhere
within the same country. Some projects have concentrated on very specific
health issues, whereas others have focussed upon more comprehensive coverage,
aiming at the introduction of people-centered approaches across a wider
spectrum of health services. In illustration of the differing initiatives
being taken within the developing world, the WHO Report [13] usefully discusses
the progress achieved by five, specific countries: El Salvador, Malaysia,
Rwanda, Thailand and the United Republic of Tanzania, based on the
presentations made at the 5 May 2010 session of the Third Geneva Conference.
El Salvador
The example provided from El
Salvador focuses on maternal mortality which, according to WHO estimates,
stands at 170 per 100,000 live births [15], a rate considerably higher than the
regional average of 100/100,000 and with deficiencies in the quality of
maternal health services as well as significant social and economic
disadvantage suggested as causative. These statistics stimulated a governmental
people-centered medicine initiative, involving both national and local leaders
within the health system, with the aim of enhancing access to maternal health
services and increasing the empowerment of women, their partners, families and
communities. Methodologically, the initiative commenced through a process of
team building within the health system at national, regional and departmental
levels, followed by the creation of strategic committees formed with
representation from municipal government, local institutions, non-governmental
organisations, health workers and communities themselves. Community
consultations followed, with separate fora held for women of childbearing age,
importantly including their partners, mothers, mothers-in-law, grandmothers,
health workers and community and indeed religious leaders. The recommendations
made by these fora were then assimilated by an inter-stakeholder forum at which
common themes were identified and a consensus formulated on the most urgent
priorities, with a formal consideration of how action plans could be drawn up
and implemented with an expectation of reduced maternal and neonatal mortality
and morbidity.
Encouragingly, the developed programme has been implemented
operationally within eight municipalities at the time of writing and although
the consultation process described above was standardised across them,
interesting differences were observed in the way in which each municipality
subsequently customised the programme in alignment to its particular individual
context and local priorities. Remarkably, maternal deaths are reported to have
decreased to zero since 2006 in 90% of the municipalities participating in the
programme and a further benefit of the development and implementation process
has been a greatly enhanced sense of ownership within the communities and a
growing leadership within them, so that people’s relationship with their local
health service has improved significantly and intersectoral links and
mechanisms of coordination have additionally been strengthened. The programme
continues to promote people-centered care by actively informing the development
of national policies, recently becoming accepted for inclusion within the El
Salvador national plan for the reduction of maternal, perinatal and neonatal
mortality and the national plan for social participation.
Malaysia
A similar example of encouraging
success in the development and operation of people-centered medicine policies
and practices and documented within the WHO Report [13] has been supplied by
Malaysia, a populous country of some 27 million people with a definitive
person focus prominent within the country’s stated national health service
goals. This policy currently translates into an emphasis on wellness, a
commitment to the availability and provision of accurate and timely health
information, processes for the empowerment of people in the self-management of
their health, together with tailored and integrated health services provided
locally and universal access to primary care services at minimal direct cost –
the Report [13] quotes the US dollar equivalent of $0.30 for each outpatient
visit.
Further examples of the commitment of the Malaysian Ministry
of Health to the promotion of people-centered care recorded by the Report [13]
are provided by its introduction into practice of a set of innovations aimed at
the improvement of the quality of care which include the availability of
home-based health cards allowing inhabitants of more rural and remote areas of
Malaysia to have access to their health records and to obtain health care at
any facility. The creation of an on-line ‘my health e-portal’ is additionally
documented. Further initiatives include the availability of electronic
lifetime health records and also the extension of clinic hours with the aim of
making service availability and attendance opportunities more convenient for
patients, with home attendances increasingly possible in some areas for
children and studies underway evaluating the benefits of postal delivery of
medications and drive-through pharmacies.
A noteworthy additional set of innovations has been
governmental action resulting in the introduction of practice guidelines,
credentialing and privileging, continuing professional development programmes and
systems for patient and family feedback on their experience of care. These
mechanisms appear set to improve the overall quality of clinical care as part
of a determination by the Malaysian government to increase the professionalism
of health care workers and of the standard and extent of caring in general.
Rwanda
Having recorded these developments
in El Salvador and Malaysia, the WHO Report [13] continues by reviewing the
innovations introduced and progress made in Rwanda. Psychiatric and psychological
morbidity in Rwanda is high, with rates of depressive illness and
post-traumatic stress disorder that are greatly in excess of national averages
elsewhere, disturbances which are perhaps most easily understood in terms of
the effects of the 1994 genocide on the collective conscience of the remaining
people. In order to address this problem, the Government of Rwanda instituted
a programme aimed at the provision of people-centered health care to all those
citizens presenting with mental health problems.
An initial national mental health policy was agreed shortly
following the cessation of violence in 1995, with officials and others
proceeding some ten years later in 2005 to the prioritisation of mental health
as a major area for health intervention, calling additionally for the
integration of mental health services in all national health system structures
and at the community level. At the time of writing of the WHO Report [13], a
decentralisation of mental health services had taken place, such that 41 of 43
district hospitals in Rwanda now operate mental health care services.
Moreover, success has been achieved in the methods used for
drawing up personalised mental health care plans, with care provided as close
to people’s homes as practicably possible. Importantly, trained nurses, acting
under medical supervision, now contribute to the delivery of clinical services
and, from a governance and audit point of view, participate regularly in
individual case review sessions along with other mental health workers,
including medical students. A key feature, and one emblematic of the
people-centered approach being taken in Rwanda, is the management of mental
disorders from the biopsychosocial and holistic perspective. Thus, people
presenting with psychological dysfunction or frank psychiatric illness are
considered not simply in terms of their diagnostic category, but rather in
terms of their history, community and indeed their current life circumstances,
with efforts currently underway to integrate mental health services with
general health services. The support of family structures is emphasised here,
such that the Rwandan National Mental Health Programme is clear that ‘families
are our partners in the health care business; everything is done with them’.
Thailand
Having considered the status of
people-centered care in Rwanda, the WHO Report [13] moves to a review of the
position in Thailand, a country which has recently modified the model of its
health services delivery from one built essentially entirely on a secondary
care model to one now organised principally in and from the community. Historically,
the move within Thailand to people-centered care began in 1991, following the
initiative of a small group of health services researchers demonstrating, over
a range of different health facilities, that people-centered approaches to care
were not only possible to implement, but indeed preferable to the prevailing
system.
Methodologically, regular community consultation aimed at
eliciting people’s views was followed by a more systematic utilisation of
patient and family records, the construction and use of registries for clinical
populations and the introduction of improvements in referral systems between
primary and secondary care facilities, together with a greater use of home
visits and the use of a payment system based on flat rates per illness episode.
A measure of consolidation was achieved by disseminating knowledge of the
innovations across health services and networks and by introducing the relevant
training into pre-service nursing and medical curricula.
This ‘bottom up’ approach to the implementation of
people-centered medicine was commended to the political classes of Thailand via
the organisation of visits by the Minister of Health and other relevant
officials to the reorganised and developed health facilities, where direct
observation of the successful operation of the new model of care was possible.
In this way, political interest and support was developed strategically to the
extent that, following the publication of Thailand’s universal coverage
reforms of 2001, the people-centered approach was adopted by the government as
the foundational model for its primary care-based health care system.
The associated statistics are illustrative. Indeed, within
a one year period, the people-centered programme had extended from 60 health centres
serving some 60,000 inhabitants to 1164 health centres, serving some 12 million
people.
Tanzania
The final example presented at the
Third Geneva Conference and discussed in the WHO Report [13] is provided by the
United Republic of Tanzania and takes the form of a project designed
specifically to improve the care of people receiving anti-retroviral therapy
(ART) by assisting the adherence of HIV-infected individuals to their
anti-retroviral regimens with the aim of securing the best clinical outcomes
possible in terms of morbidity and mortality from infection and disease. The
rationale for the project derived from baseline analyses which had reported
that up to 36% of patients routinely missed their clinical appointments in any
one month, raising serious concerns about the effects of treatment interruption
on individual and public health. At the time of writing of the WHO Report [13],
six health centres are in the process of implementing the aims of the project,
with a subsequent extension planned to enable the coverage of the entire region
and thus some 2 Million inhabitants.
The development of the people-centered health care approach
commenced with the identification, through convened focus groups consisting of
local people, of the common barriers to clinical attendance and how such
difficulties might be overcome. The barriers described were simple, yet
fundamental: the availability (or lack of it) of transport to and from the
clinic centres and the fear of stigma and discrimination associated with being
seen as an attendee at the clinics. Through the direct elicitation and use of
patients’ own solutions to these logistic and cultural barriers to clinic
attendance and drug regimen adherence, the health services researchers were
able to reconfigure existing services to take account of people’s needs and to
modify health worker – patient interactions. For example, the quantity of
antiretroviral drugs dispensed was increased to a two month supply to reduce
the frequency of clinical attendances required and relatives were permitted to
collect anti-retroviral drugs on behalf of patients in order to attenuate the
patient’s fear of being identified as a clinic attendee, with measures
additionally taken to enhance the privacy of the anti-retroviral clinic
facilities themselves.
Shared decision making processes were also introduced within
clinic facilities, so that consultations no longer involved the handing down of
paternalistic treatment decisions and instructions, but rather became
characterised by patient involvement in decision making and their active
participation in the planning of their care. Although health care workers were
initially resistant to the changes described, audit of progress demonstrated a
growing satisfaction with the quality of care by both health care workers and
patients and the demand for reconfigured services is reported to have increased
threefold, posing operational challenges of its own. Notwithstanding these,
the Tanzanian Ministry of Health and Social Welfare is currently in the process
of developing quality improvement guidelines and training manuals to assist the
dissemination of the innovations described to other areas within the country.
What lessons may be learned from the specific projects discussed?
A key feature of the WHO Report [13]
is the section which discusses the lessons that can be learned from the
experiences described in the five countries studied and which identifies a
series of factors that appear to be of methodological utility in the
development of people-centered health care within the given contexts. The
Report [13]recognises that action at multiple levels, not just a single level,
is required to ensure the progress and ultimate success of people-centered
approaches to care and that these will include modifications in the health
worker – patient interaction and relationship, reconfiguration of clinical
service organisation and delivery, the involvement of the local community and,
very importantly, political commitment.
The Report [13] observes personal interactions as
fundamental to success. Here, regular communication with patients and their
families and the building of close relationships with community organisations
such as non-governmental agencies, community health workers, volunteers, self-help
groups, schools and employers was viewed essential, so that knowledge and
trust is established and patient feedback made available for use in the
development of services. Not that professional engagement with this philosophy
was automatic. On the contrary, in the examples described within the Report [13],
initial professional resistance to a modification of service delivery that
incorporated these principles was a recurring feature and health care workers
typically required direct evidence that the active participation of patients in
their care - and the time taken away from busy schedules required to build and
maintain personal relationships and to take proper account of patients’
preferences, values and expressed needs and to encourage health promotion,
disease prevention and risk reduction - was useful and likely to lead to
better clinical and related outcomes. Likewise, the use of methods designed
to ensure continuity of care through decentralisation of clinical services and
the proper functioning of referral systems were seen as vital, with primary
healthcare teams viewed as ideally suited to the implementation and use of such
methods.
Guideline development, as part of educational strategies,
and the use of so-called ‘toolboxes’ also proved of significant use in
fostering people-centered approaches to care. All of these systems and tools
require adequate information technology or at the very least structured patient
and family records held as databases or in a formal Registry, without which needs
assessments, care planning, the evaluation of progress and clinical outcome
measurement/description all become essentially impossible, severely limiting
the possibility of developing people-centered approaches at the level of the
population and person-centered care at the level of individuals. The WHO
Report [13] recognises, from direct observation of the examples given and from
separate experience, that attempts to utilise these principles and methods in
isolation from effective leadership at national and local level and in the
absence of what might be termed a ‘positive policy environment’ and the
commitment of senior government officials through personal authority and
influence or through agreed governmental policy, is essentially futile. Neither
can people-centered approaches to care or those at the level of the individual
patient be successfully fostered without adequate education of all relevant
health workers and the Report [13] recognises the need for training reform as
part of the development of people-centered health care. Here, the institution
of continuing professional development programmes and the use of practice
standards, credentialing and auditing for existing professionals is of very
particular importance as is the need to consider the potential for introduction
of people-centered care teaching into undergraduate clinical curricula for
those in training.
Discussion
Taken both individually and
especially together, these examples provide a compelling indication of the
nature and scale of improvements in people and person-centered care that is
possible in the particular circumstances in which the reported improvements
were attempted and achieved: low and middle income countries. Nevertheless,
the WHO Report [13] has the status of a narrative record of the oral
presentations made at the Third Geneva Conference and this is at once its
strength, but also its weakness. Indeed, while these stories of health care
quality improvement driven by the person-centered philosophy are both highly encouraging
and greatly inspiring, they are no substitute for a scientifically rigorous
documentation, analysis and interpretation of the results from suitably
designed and controlled studies.
This is not to criticise the progress reported. On the
contrary, the WHO Report [13]itself, emphasises that there is a lack of
consensus on how to measure progress towards people-centered care and an urgent
need to define indicators with which to set targets, monitor progress and
evaluate the effectiveness of the variety of interventions that can be used to
facilitate the development of the people-centered approach. Indeed, the
Report [13] is clear that from a methodological point of view, the current
health services research and development base for the operationalisation of
people and person-centered medicine in low and middle income countries is
substantially incomplete. Review of the associated literature shows that a
plurality of methods has been used and research conducted in different
populations under highly varying circumstances. This, as is pointed out, makes
comparative studies essentially impossible and generalisation hazardous. The
development of standardised methodologies for testing people and
person-centered interventions under controlled experimental conditions, with
subsequent evaluation of the results obtained, is therefore, crucial – and
urgent.
Clearly, these experimental conditions (and the prioritised
needs of communities, regions and countries) will differ markedly between high,
medium and low income countries and the Report [13] is concerned to emphasise
the need to include the last two of these socio-cultural and economic contexts
in methodological thinking as soon as possible, especially given that the
greatest volume of literature available so far has been generated from research
conducted in high income environments. Certainly, if the methods employed by
the five countries documented within the Report [13] can be tested more
rigorously and their results examined for generalisability and sustainability
in the longer term, then the vision of the WHO and the INPCM for the
operationalisation and maintenance of people-centered care in developing
countries will translate steadily into an achieved health benefit and a great
public good.
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