Lessons from overseas patient/user organisationsGraham
Lister: The College of Health 15
Feb 2001 IntroductionThe
NHS Plan, with its emphasis on working with patients and the public, is
a very welcome signal of a new approach to public and patient engagement
with the NHS, not simply as “customers”, but as partners in
improving personal and public health.
As
an optimist I hope that we can use this new start to build stronger
relationships and a better structure to support them, but we must also
recognize that good intentions are not enough.
We have to get down to the difficult task of working out how we
can change our working culture and that of the NHS to enable us to work
together better and to decide on the organisation and structures we
need, at local and national level, to support this.
For this reason the College of Health has been glad to form part
of an open consortium with our colleagues from the Patient Forum and the
Long Term Medical Conditions Alliance to investigate the scope of a new
national organisation or network to support public and patient
involvement with the NHS. We
hope that as many as have ideas on this issue will join in. This
does not mean that we can or should start with a blank sheet of paper,
indeed given the very small budget and timescale for our review we could
not do this even if we wished. We
must build on experience and best practice.
The main source of good practice in this country has of course
been the work of Community Health Councils and ACHCEW, I hope they will
contribute generously to the review.
May I add that our consortium has seen no contradiction in
looking forward to the new structures we need while joining our names
with the protest at the way in which the abolition of CHCs has been
announced without consultation. In
this paper I will take a preliminary look at another source of ideas for
public/patient involvement; lessons from other countries.
So far this is based on a limited questionnaire sent to personal
contacts in six countries. Most
of these were ex colleagues working in the health consulting practices
of PricewaterhouseCoopers to whom I am very grateful.
The questionnaire is attached at Annex A.
I will draw lessons from:
While I recognize that we cannot simply transplant methods of involving public and patients from other countries there are valuable lessons to be learnt. In the final section of this paper I speculate on how we might apply such lessons to our system. I suggest the components that are required to build and support community involvement. These include commitment and training at all levels for behaviour change, a legal basis for patient rights, a network organisation to support local initiatives and technical resources such as training, measures of patient perception and expertise to engage communities across ethnic and social divides. I also refer to the potential to develop Open Health as a DiTV resource to increase involvement and the need to establish a strong European and global network of patient organisations. The Netherlands “Polder model” of patient and public engagementThe Dutch
health system is based on social and private health insurance, which
ensures universal free access to GPs and hospitals.
Health insurers were once regionally based but now compete for
clients. Patient rights and
interests are supported in four very important ways.
First, a declaration of patients' rights is enshrined in the
civil law. Second
participation is high, almost one in five of the Netherlands population
of 15 million belongs to a wide range of patient and health consumer
organisations. Third the
Dutch Ministry of Health supports the Patient/ Consumer movement with
serious funding. Most
importantly there is a clear structure and process for representing
patient and consumer interests and dealing with patient rights and
complaints, taking up both local and national issues. The Netherlands
Federation of Patient Consumer Organisations (NFPCO) was founded in the
early 80s, my co speaker at this conference and friend Fons Dekker,
played a very important role in developing this organisation.
The Federation offers facilities, training, financial support
and, above all, a national platform.
It acts as a highly effective mouthpiece for a host of
organisations and interest groups that represent some of those least
fortunate and able to articulate their needs at the highest political
level. Since one of its
main aims is to promote freedom of choice as the prerequisite of
informed consent, a key task is to provide a wide range of information
in the form of books, leaflets and newsletters through a national
network of information centres and services.
Another aim is to define the needs of patients and carers from their
point of view. The Federation has funded research studies and is
producing a handbook for health professionals pointing up the gaps
between what patients want and what professionals provide. There are
about 20 umbrella organisations representing patients interests drawn
together in the NFPCO, there are about 2 million associated members.
This national
structure is mirrored by 30 Provincial Patient Councils, which draw
together patient and consumer interests at this level, each council runs
their own complaints and information desk.
Legislation ensures that these regional Patient Councils are
involved in provincial. Insurers
and local health providers also have formal “patient/user councils”
which are required by legislation.
Patient representatives are also involved in complaints
committees again as a legal requirement.
In addition hospitals and insurers offer places on boards and
committees to patient representatives as a matter of good practice. What is perhaps
most striking about the Dutch system is that the government has
conferred on the NFPCO the status of equal partner in a triangular
relationship between the purchasers and providers of health services and
the recipients of those services - the patients and their carers.
They are seen as key contributors to the system of checks and
balances for the protection of patients' rights.
A series of laws have been passed which give formal recognition
to the rights of patients to meaningful participation in decision-making
at every level of healthcare and to the systematic provision of high
quality information as the key to involvement, freedom of choice and
quality of services. The Dutch
system has given a very powerful role to the NFPCO.
The Federation, the Royal College of Physicians and the National
Hospital Association meet on a joint board that supports and runs a
national network of patient/consumer advice centres in the community and
complaints bureaux in hospitals (required by law).
Patients register complaints and are advised how to take it
forward, if necessary support and/or mediation will be provided.
If the patient is not satisfied the patient/consumer bureaux will
follow up the issue on their behalf.
The Federation publishes a powerful annual report, which receives
widespread media coverage and there are also plans to produce ratings of
hospitals' performance against patient-defined standards.
The Federation works as an equal partner with the Dutch Royal
Colleges and the Hospital Association in developing guidelines for good
practice. The Dutch model
of patient and public involvement can be seen as a facet of what they
call the “Polder Model” of society in which consensus is achieved in
an empowered community. The NFPCO crosses the divide between government and the
voluntary sector, it is an impressive example of an empowering support
organisation that works. Switzerland
focuses on value for money The Swiss take
great pride in their health system, which by many standards could be
judged to be the best in the world, they spend more on healthcare than
any other country except the USA but were the last country in Europe to
legislate for universal social health insurance coverage.
Their system is based on a mixture of social and private
insurance companies. As
people are increasingly aware of the high cost of health insurance in
Switzerland there is a particular demand for value for money for
consumers in their system. Switzerland is
a federation of 26 Cantons and it is at this level that citizens
participate in government decisions, by a show of hands at a local
meeting or in national ballots. There
are a great many local patient organisations as well as national disease
specific organisations. These
are divided between local and disease specific patient based
organisations and “Liga” which are disease specific organisations
with medical leadership, which raise money for research and development
for specific diseases. There is also a
strong consumer movement, which has developed rapidly in the health
sector. This is often based
on a magazine for example Ktip (K=Konsumer) or in one case a long
running popular television programme, but these are now backed by web
sites and other media offering evaluations of medical treatments,
products and services. These
organisations provide consumer advice both on health providers and on
the different social and private health insurers. At national and
level patient and consumer organisations are supported by the Swiss
Patient/Insured Organisation (Schweizerische Patienten Versicherten
Organisation- SPO) and at local level by Patient Offices (Patientenstelle).
This is funded by government at federal level and by Cantons at
local level but is an independent watchdog for patients.
They produce a range of patient information and represent general
patient views alongside the major patient organisations themselves and
they also provide counselling and advocacy services. It appears that
there are no specific procedures for supporting patient complaints at a
local level, this depends upon the good practice of the hospital or
doctor. There is, however,
a strong “Ombudsman” system to pick up complaints, which are not
dealt with satisfactorily. Patient
rights are an important issue for the patient movement the SPO web site
currently greets you with “Als patient haben sie recht” (you have
rights as a patient). The Swiss
system provides support for patient and consumer representation as a
matter of course. In recent
years there has been a great rise in the awareness of the cost of
medical insurance, even though for the majority of people it is covered
by compulsory social insurance payments.
A survey in 1997 showed that the majority of Swiss people would
be prepared to accept some limitations on their health coverage if they
could reduce the health insurance premium.
So the Swiss demand value for money not only from their health
providers but also from their health insurance organisations.
Consumer organisations have developed services to rate the
quality of both insurers and health providers and the Swiss Government
is experimenting with measures of patient experience and satisfaction
similar to those introduced in the UK.
Australia: a
leading example of patient/consumer reforms Australia has a
federal government structure; its health system is funded from three
sources, the State (regional) Governments, Commonwealth (central)
Government and insurance and local co-payments.
Australians feel their system achieves a balance between national
policies, regional control and local responsiveness to patients
delivering high quality services at a reasonable cost.
The
Commonwealth Government has instituted a number of interesting reforms
to its health service in recent years and though these tend to proceed
rather slowly due to the need to gain consensus at state and local
levels, they may be the better for this.
In April 1997
the Consumer Focus Collaboration was established as a Commonwealth/state
committee to examine consumer involvement in healthcare.
The collaboration itself was drawn from patient/consumer groups,
professional bodies, complaints commissioners (see below) government and
private sector representatives. It
established a strategic plan with the aims of: improving information to
health consumers, facilitating consumer involvement, improving
accountability to consumers and promoting training in support of
involvement in health service planning and delivery. This
development led to the creation of a series of programmes including: ·
Consumer and Provider Partnerships in Health Project ·
National Resource Centre for Consumer Participation in Health. ·
Structural and Cultural Marginalisation in Health Care Project. ·
Provider/Consumer Education & Training for Consumer
Participation Project. ·
Stock
take of models for the facilitation of consumer access to information. ·
Project to support nurses to involve consumers in their health
care ·
Project to support medical
practitioners to involve consumers in their health care ·
Documenting a model to select and support consumer
representatives (Breast Cancer Network) ·
Communication and clinical outcomes ·
Toolkit for consumer participation ·
Reporting to consumers on health service quality ·
Consumer participation in the
accreditation of health care services ·
Consumer perception of adverse events I
have chosen to quote this rather extensive list because it illustrates
the scope and depth of the initiatives that this programme invoked.
It is clearly not a quick fix and it has required and will
continue to require a great deal of investment and work at all levels to
achieve its objectives. The
Commonwealth Government funds these programmes. At
national level the Consumer Health Forum provides a focus for
patient/consumer voices in health as does the Australian Consumers
Association. There is a
national ombudsman for private health insurance.
Supporting organisations include the National Resource centre for
Consumer participation in Health and the Health Issues centre.
There is an Australian Clinical Guidelines Development Programme
with mandatory patient involvement. At
state level there have also been very active programmes to promote
consumer participation in health care.
In Victoria they have recently been engaged in developing
guidelines for health boards in establishing the Community Advisory
Committees and Community Participation programmes, which are now
mandatory. It is important
to note that they do not stop at the establishment of a representative
committee but also mandate and guide the development of active
programmes for promoting community participation.
A
similar development can be seen in New South Wales where they are
establishing a state wide Consumer and Community Representative Forum
and a resource group to support local consumer organisations.
The recent New South Wales report on Community Participation
recommended that formal structures for ongoing community participation
in each Area Heath Service should be established and published in their
annual report and that each Area Health Service must: ·
Show
how it has involved local communities in the development of its Area
Health Plan ·
Include
expectations about consumer and community participation in the
performance agreement of their Chief Executive Officer. ·
Make
their planning and budgeting processes and timetables clear to the
community ·
Establish
a sub-committee with responsibility for overseeing community
participation ·
Designate
staff to facilitate and support community participation activities. At State level there are also Healthcare Complaints Commissions, which were established by parliament in 1994 to provide an independent accessible organisations, which could take up patient complaints. The Patient Support Office of an HCC has the following functions: ·
Assist
consumers to understand and uphold their health rights. ·
Resolve
concerns by: ·
providing
information and facilitating self advocacy ·
assisting
consumers negotiate and discuss ·
Provide
information on avenues to resolve concerns ·
Provide
information on health, welfare & support groups ·
Facilitate
fair, simple, timely & efficient resolution of concerns ·
Provide
information on health services & consumer rights &
responsibilities ·
Assist
resolution through: clarifying issues, identifying options and direct
assistance ·
Network
with community groups to provide information and understanding of: the
health system, health consumer rights, resolution of concerns with
health services, the role of the Patient Support Office itself. I felt it was useful to quote these examples at some length since they give a further indication of the commitment to consumer involvement that is evident at national and state levels in the Australian health system. It is for this reason that the Australian model is often quoted as an example of a wholehearted attempt to strengthen community involvement at every level. They have not yet achieved the level of participation achieved by the Dutch as it will obviously take many years to change attitudes and working habits. United States of America: measuring patient perceptions Americans tend to regard European health systems with horror; they have come to associate any service provided by the state as second rate and many cannot imagine that we do not envy their private sector dominated health services. At their best these can provide a very high quality of treatment and care for those who can afford it. But there is really no such thing as “the” American health system, there are thousands of different health plans offered by insurers, HMOs and employers plus the Government funded Medicare and Medicaid. Through these programmes the US government spends about the same per head of total population as the UK, but these patients expect and get a decidedly second-rate service. Worse still 17% of the population are not poor enough to qualify for Medicaid, nor old enough for Medicare, but not rich enough to afford health insurance, illness is still the greatest cause of bankruptcy in the US. Health reforms including the rise of health maintenance organisations (HMOs) are said to be holding back the rising cost of health care but even so costs are forecast to rise from their current level of 14.6% to 16% of GDP within three years. The American patient movement is equally fragmented with no clear leadership. At a national level there are hundreds (and maybe thousands) of organisations representing patient interests. Many of these organisations are focused on certain diseases/conditions (e.g., American Heart Association, American Cancer Society, etc.). Others represent certain interest groups (e.g., American Association of Retired Persons is quite vocal about Medicare program for the elderly). Those organizations that are disease/condition specific do have a structure that usually has a national parent organization supported by state or local (e.g., county) chapters. State and local chapters will focus on fundraising, educational activities and elevating local issues to the national organization. The national organization usually has a lobbying arm in Washington D.C. and may work with national medical societies on specific research (e.g., American Heart Association works closely with American College of Cardiology). From time to time, depending on the issue, various coalitions of these organizations have come together, but not on a consistent basis. One organization, the Center for Patient Advocacy, is trying to organize actions on a national level, but it is not clear how effective they have been. Because
much of healthcare funding depends on the link between employers, health
insurers, and providers, some large employer groups have taken on a
“consumer role” by requiring certain protections, complaint
processes, etc. for their employees.
Other
associations, such as the American Medical Association, American
Hospital Association, etc. have a variety of patient advocacy
initiatives (see information on Patients’ Bill of Rights below)
although some cynics would say that these are really meant to increase
physician and hospital standing vis-à-vis health insurers. Many private health insurance companies are starting consumer advisory committees, in which the insurance company solicits feedback on proposed policy changes, feedback on customer service, etc. Some think the insurance companies have done this as a defensive mechanism to delay attempts to legislate such input. These committees usually include people covered under the health plan. Public health agencies also will have consumer advisory boards that are asked to provide input on new or existing programs. All
health insurance companies also have an appeals process by which
physicians and members can appeal payment/coverage decisions.
Traditionally, health plan employees and medical directors have
reviewed these appeals. More
and more, health plans are seeking independent review, usually by
outside physicians, that is then binding on the health plan.
Other types of consumer complaints are made directly to the
health plan and then handled through an internal review and response
process and/or to the State Health Insurance Department.
The State health insurance departments track all complaints
against each insurance company and make this complaint rate available to
the public. Complaints
against specific providers (physicians, hospitals, etc.) may also be
made to the State Department of Health, the state Attorney General, or
the State Licensing Board. A
number of institutions have developed ways of assessing patient
responses to the quality of service they receive from hospitals.
The best known in the UK is the Picker Institute, which developed
an understanding of patient’s perspectives as a result of a survey of
6000 patients and 2000 carers in the US.
From this survey they established seven dimensions of care that
were seen as most important to the patient experience: 1.
Respect for individuality 2.
Co-ordination of care 3.
Information and education 4.
Promotion of physical comfort 5.
Provision of emotional support and alleviation of fear and
anxiety 6.
Involvement of family and friends
Although
based on US experiences and practice, proprietary measures based on
these dimensions have been applied in the other countries including the
UK, Canada, Sweden and Switzerland.
Not surprisingly comparisons show the UK as lagging a long way
behind Canada and the US in the quality of the patient experience. The
American Hospital Association has a long-standing patient bill of rights
that all hospitals are expected to adopt or adjust to local market
needs. In addition, many states have legislated patient rights
requirements for hospitals that include mechanisms for responding to
patient complaints. Hospitals
may have also a small number of consumer representatives on their board.
There is currently a well-publicized effort to legislate a national Patients’ Bill of Rights (PBOR). Many of the elements in the proposed legislation are a direct result of the backlash against managed care and include items such as allowing consumers to sue their health plans for medical malpractice, requiring coverage for any emergency services that a “prudent layperson” would consider an emergency, prohibiting health plans from having gag rules in contracts with providers (in which providers are not allowed to discuss treatment options), and so on. Various versions of the PBOR have come forward – one was passed by the House of Representatives in October 2000 but then languished before the Senate and is now stalled awaiting the new Presidential administration. In the meantime, several states have legislated their own PBORs. Also, many health plans have started to make some of these changes on their own or have started to publicize the fact that they have never had such restrictions. From a European
perspective the US health market seems deeply divisive.
The efforts to develop a patient’s bill of rights though
laudable do not address the rights of access to health services or
equity of treatment, which are fundamental to virtually every other
health system in OECD. The
US seems to depend more upon legal process than advocacy to maintain
patient interests and the process of patient involvement in health
policy seems more like lobbying than representation.
Despite this we can learn from the way in which they study and
learn from their patient/customers. New Zealand: a radical approach to patient
rights The New Zealand health services are largely funded through taxation though a comparatively high proportion of the population has private medical insurance to provide additional services. Health reforms in New Zealand preceded the UK “internal market”, and took a more extreme form with the commissioning role of Regional Purchasers and later the Health Funding Authority separated from health provision by Crown Enterprise - Hospital and Health Services. They also developed a form of fund holding practice that allowed a lot of experimentation with local budgets, including links between health and social care. These reforms have since been reversed, it is arguable, however, that New Zealand Health service learned a lot from these experiments and the current service achieves reasonable health outcomes at a comparatively low cost by OECD standards. While patients and the public are invited to comment on health policy and legislation through consultation processes, which are underpinned by administrative law, there are no formal national or regional organisations that represent patient interests on a broad front. There are numerous ‘single issue’ representational groups that seek to protect and promote the interests of people with particular conditions (e.g. asthma, diabetes, cancer) and their families/carers. There are also groups that claim to speak for particular population groups (e.g. ‘Grey Power’, Women’s Health Action Trust) and others that might most accurately be described as ‘lobby’ groups. An example of such a lobby group is the Coalition for Public Health – which was disbanded shortly after the 1999 general election in the belief that its role as a self-appointed ‘guardian’ of publicly-funded and owned health services would become redundant following the election of a centre-left Government. As in the UK some of the patient and consumer organisations have received short term government funding for services and projects such as provision of information services, input to planning studies or direct patient services. Prior to 1 January 2001 there was no formal provision for public ‘voice’ at either the purchaser (Health Funding Authority - HFA) or publicly owned provider (Hospital and Health Service - HHS) level in New Zealand's Health System. Following the New Zealand Public Health and Disability Act 2000 wide-ranging structural changes took effect on 1 January 2001. Those changes brought about the dis-establishment of both the HFA and HHSs with their responsibilities being shared between 21 new District Health Boards (DHB) and an enlarged Ministry of Health. The new DHBs will own and operate hospitals and related services within the areas they serve (thus having a provider role) but will also enter into agreements with non Crown-owned providers to deliver a wide range of non-hospital services (in effect, a purchaser role). In October 2001 elections will be held to select seven members to serve on each Board (the balance of up to four members per Board will continue to be appointed by the Minister of Health). Voters will be eligible to vote for members of their local DHB Board; and candidates must be resident in the area served by the Board to which they seek election. Each DHB is required by to establish a Hospital Advisory
Committee, a Disability Support Advisory Committee and a Community &
Public Health Advisory Committee. These
Committees will provide advice to the main DHB Board on their specific
areas of responsibility and may, with the agreement of the main Board,
be delegated decision-making powers.
The composition of these Committees is not defined in law and may
encompass practitioners, members of the public and/or members of the
main DHB Board. Some 50% (by value) of New Zealand’s health and disability support services are delivered by non Crown owned (ie private or charitable/voluntary sector) providers. There are no formal requirements for such providers to involve patients or the public in their operations although, in common with all other providers, they are required to comply with the Code of Health and Disability Services Consumers' Rights. In practice, many providers (especially those the not-for-profit) operate some form of consumer representation arrangements. The Code of Health and Disability Services Consumers' Rights confers a number of rights on all consumers of health and disability services in New Zealand and places corresponding obligations on providers of those services. The Code was established under the terms of the Health and Disability Commissioner Act 1994 which seeks "to promote and protect the rights of health consumers and disability services consumers, and, to that end, to facilitate the fair, simple, speedy, and efficient resolution of complaints relating to infringements of those rights". The Act also established the role of the Health and Disability Commissioner to protect the “rights of consumers” and “duties of providers” which have a legal basis in this law, they are:- ·
Right
1 : the right to be treated with respect ·
Right
2 : the right to freedom from discrimination, coercion, harassment, and
exploitation ·
Right
3: the right to dignity and independence ·
Right
4 : the right to services of an appropriate standard ·
Right
5 : the right to effective communication ·
Right
6 : the right to be fully informed ·
Right
7 : the right to make an informed choice and give informed consent ·
Right
8 : the right to support ·
Right
9 : rights in respect of teaching or research ·
Right
10 : the right to complain New Zealand seems to take more decisive steps than the UK both in its experiments with the internal market and now in making its health services accountable to the public by elections to health boards, the adoption of clear legally enforceable patient rights and the creation of user committees which may have delegated powers. The patient rights (and provider duties) are particularly interesting in the light of recent events in the UK for this reason I have included a more detailed resume of the rights at annex B. Canada takes a long look at patient/public
involvement The Canadian health system is funded from taxation
and insurance payments from higher income groups; this provides equal
access to a common range of services managed at Province level. Health care and patient service levels are generally very
good and are provided at a cost well below that of the USA, though some
Canadians travel to the US for advanced medical procedures not commonly
available in Canada. In October 1994 the Prime Minister of Canada launched
the National Forum on Health to involve and inform Canadians and to
advise the federal government on innovative ways to improve the health
system and the health of Canadian people.
The Forum, with a four-year mandate, was set up as an advisory
body with the Prime Minister as Chair, the federal Minister of Health as
Vice Chair, and 24 volunteer members who contributed a wide range of
knowledge founded on involvement in the health system as professionals,
consumers and volunteers. To fulfil it’s mandate, the Forum focused on
long-term and systemic issues. Working groups in four key areas: Values;
Striking a Balance; Determinants of Health; and Evidence-based Decision
Making, met to formulate advice on national policies.
The working groups commissioned research papers from eminent
specialists in their fields; reviewed international trends; conducted
public opinion surveys and held workshops. One of the research papers addressed the issue of
consumer involvement in health policy development. The study concluded that consumers can be a potent voice in
advocating for and effecting change within the health care system.
However, it also observes that consumers are often poorly
informed and have limited access to organized resources.
Therefore, extraordinary effort by government is required to
enable them to play an effective advocacy function.
In order to facilitate a more effective role for consumers in
health care policy decision-making, the paper recommended a programme of
actions including: ·
Clarify
the goals of consumer participation ·
Ensure
funding for consumer interest groups (currently groups lose their
charitable status if more than 20% of their resources are spent on
advocacy activities). This
limits the ability of advocacy groups to raise funds in the private
sector. ·
Mandate
and support more consumer participation in decision making; ·
Develop
and fund a national consumer health forum along the lines of “The
Consumers’ Health Forum of Australia”.
·
Sponsor
a national consumers’ health conference to encourage consumer advocacy
organizations from across the country to review their current
perspectives on health reform and to promote their willingness to work
together on a joint agenda. Each province/territory has legislation to establish self-regulating bodies that govern the licensing and disciplining of health care professionals i.e. doctors, nurses, physiotherapists etc. This legislation includes a mechanism for investigation of patient complaints and where necessary, the discipline of the professional involved. Public hospital boards include consumer representatives and the Canadian Council on Accreditation of Health Care Facilities includes consumer input in their survey process. Provinces also have legislation to establish an Ombudsman position. The Ombudsman’s job is to investigate complaints against the provincial government organizations. It is an office of last resort, when all other appeal procedures have been used. In Ontario the ombudsman cannot investigate complaints outside his/her jurisdiction e.g. police, doctors, lawyers etc. but can investigate complaints about health insurance, access to government services, patient care in psychiatric hospitals and so on. The Canadian approach to public and patient involvement shows that this issue is being addressed seriously as a long term development with important implications not just for the democratic process but also for public health. It is notable that they set a 4-year horizon to address this issue rather than 4 months as in the UK. Taking Lessons from Other Countries for the UK While
we can learn from developments in other countries, we must recognise
that in each country the engagement of citizens with their health
service depends upon a host of cultural, social and historic
circumstances. The
experience of talking to colleagues from other countries has convinced
me that the lessons we can share are not just useful for major
structural change; indeed we tend to invest too much hope in such leaps
in the dark. We have more
to gain from a continuing process of learning and development. However,
if I were to choose one lesson from each of the countries referred to in
this paper my choices would be:
There is much more to learn by working with patient
and public representative bodies from other countries.
That is why my colleague Fons Dekker and I are seeking support
for an initiative to bring together the leading network organisations in
all countries of the European Union. It is surprising to find that there is currently no such
network, despite the increasing importance of European court rulings and
EU policies for health and the potential to share experience and
resources. Together we
could reach beyond Europe to create a global network promoting community
to community links for health. Annex A Questions to Participants Public and Patient Involvement in Health
My
thanks are due to my respondents Fons Dekkers from the Netherlands Jennifer Lis from Canada Phil Davies from New Zealand Heinz Locher from Switzerland Helen Favelle from Australia Jean White the
USA In
all cases information was provided on a personal basis, opinions and
errors are mine Graham
Lister 15 Feb 2001 G_C-Lister@msn.com Annex
B:
New Zealand Health and Disability Act 1994 Rights
of Consumers and Duties of Providers RIGHT 1:
Right to be Treated with Respect
1.
Every
consumer has the right to be treated with respect. 2.
Every
consumer has the right to have his or her privacy respected. 3.
Every
consumer has the right to be provided with services that take into
account the needs, values, and beliefs of different cultural, religious,
social, and ethnic groups, including the needs, values, and beliefs of
Maori. RIGHT 2:
Right to Freedom from Discrimination, Coercion, Harassment, and
Exploitation
Every consumer has the right to be free from discrimination, coercion, harassment, and sexual, financial or other exploitation. RIGHT 3:
Right to Dignity and Independence
Every consumer has the right to have services provided in a manner that respects the dignity and independence of the individual. RIGHT 4:
Right to Services of An Appropriate Standard
1.
Every
consumer has the right to have services provided with reasonable care
and skill. 2.
Every
consumer has the right to have services provided that comply with legal,
professional, ethical, and other relevant standards. 3.
Every
consumer has the right to have services provided in a manner consistent
with his or her needs. 4.
Every
consumer has the right to have services provided in a manner that
minimises the potential harm to, and optimises the quality of life of,
that consumer. 5.
Every
consumer has the right to co-operation among providers to ensure quality
and continuity of services. RIGHT 5:
Right to Effective Communication
1.
Every
consumer has the right to effective communication in a form, language,
and manner that enables the consumer to understand the information
provided. Where necessary and reasonably practicable, this includes the
right to a competent interpreter. 2.
Every
consumer has the right to an environment which enables both consumer and
provider to communicate openly, honestly, and effectively. RIGHT 6:
Right to be Fully Informed
1.
Every
consumer has the right to the information that a reasonable consumer, in
that consumer's circumstances, would expect to receive, including- (a)
an explanation of his or her condition; and (b)
the explanation of the options available, including an assessment of the
expected risks, side effects, benefits and costs of each option; and (c)
advice of the estimated time within which the services will be provided;
and (d)
notification of any proposed participation in teaching or research,
including whether the research requires and has received ethical
approval; and (e)
any other information required by legal, professional, ethical, and
other relevant standards; and (f)
the results of tests; and (g)
the results of procedures. 2.
Before
making a choice or giving consent, every consumer has the right to the
information that a reasonable consumer, in that consumer's
circumstances, needs to make an informed choice or give informed
consent. 3.
Every
consumer has the right to honest and accurate answers to questions
relating to services, including questions about- (a)
the identity and the qualifications of the provider; and (b)
the recommendation of the provider; and (c)
how to obtain an opinion from another provider; and (d)
the results of research. 4.
Every
consumer has the right to receive, on request, a written summary of
information provided. RIGHT 7: Right to Make An Informed Choice and Give Informed Consent
1.
Services
may be provided to a consumer only if that consumer makes an informed
choice and gives informed consent, except where any enactment, or the
common law, or any other provision of this Code provides otherwise. 2.
Every
consumer must be presumed competent to make an informed choice and give
informed consent, unless there are reasonable grounds for believing that
the consumer is not competent. 3.
Where
the consumer has diminished competence, that consumer retains the right
to make informed choices and give informed consent, to the extent
appropriate to his or her level of competence. 4.
Where
a consumer is not competent to make an informed choice and give informed
consent, and no person entitled to consent on behalf of the consumer is
available, the provider may provide services where:- (a)
it is in the best interests of the consumer; and (b)
reasonable steps have been taken to ascertain the views of the consumer;
and (c)
either,:- (i)
if the consumer's views have been ascertained, and having regard to
those views, the provider believes, on reasonable grounds, that the
provision of the services is consistent with the informed choice the
consumer would make if he or she were competent; or (ii)
if the consumer's views have not been ascertained, the provider takes
into account the views of other suitable persons who are interested in
the welfare of the consumer and available to advise the provider. 5.
Every
consumer may use an advance directive in accordance with the common law.
6.
Where
informed consent to a health care procedure is required, it must be in
writing if:- (a)
the consumer is to participate in any research; or (b)
the procedure is experimental; or (c)
the consumer will be under general anaesthetic; or (d)
there is a significant risk of adverse effects on the consumer. 7.
Every
consumer has the right to refuse services and to withdraw consent to
services. 8.
Every
consumer has the right to express a preference as to who will provide
services and have that preference met where practicable. 9.
Every
consumer has the right to make a decision about the return or disposal
of any body parts or bodily substances removed or obtained in the course
of a health care procedure. 10. Any
body parts or bodily substances removed or obtained in the course of a
health care procedure may be stored, preserved, or utilised only with
the informed consent of the consumer. RIGHT 8: Right to Support
Every consumer has the right to have one or more support persons of his or her choice present, except where safety may be compromised or another consumer's rights may be unreasonably infringed. RIGHT 9: Rights in Respect of Teaching or Research
The rights in this Code extend to th |