Public involvement in health care
BMJ 2004; 328 doi: https://doi.org/10.1136/bmj.328.7432.159 (Published 15 January 2004) Cite this as: BMJ 2004;328:159
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The article about "Public Involvement in Health Care" is interesting,
but one must always remember that it was written by a profesional.
I must admit I am not, Iam a member of my local P.P.I.forum and I joined
because the concept excited me.
Now I am the first to admit that to become effective will take time
and will also depend on the willingnes of the P.C.T. that I am attached to
to accept someone like me and the other forum members into its decision
making processes. I would add at this point, it also depends on how
serious the governments intentions are. We as a society must not forget
the circumstances that led up to the decision to bring the C.P.P.I.H. into
existence.
I am a member of "the forum" attached to Wyre P.C.T.I attend Board
meetings and also Governance committee meetings and I will admit that
there are times when I think "what the blazes are they talking about" but
as I gain experience these moments grow less,and I must add that I have
never been made to feel inferior or that my views are not worthy.
It is easy to criticise, and it is easy to doubt, and I don't know
myself whether we, as Patient groups, will be succesful , but I do know
that I will try my hardest to make them so.
Competing interests:
None declared
Competing interests: No competing interests
I found the Florin and Dixon article interesting and an example of
academic thinking regarding public involvement in healthcare.
My two year experience as a member of a pilot Patient's Forum showed that
members of the public are able to influence only certain areas of a
Primary Healthcare Trust's (PCT) delivery of consistent healthcare to the
public. These are areas such as waiting room arrangements, appointment,
transport, provision of computers to therapy services, etc. To add value
at the policy and strategy level within a PCT by a member of the public
and /or a patient will be far more difficult. As a lay member of a PCT's
Clinical Govenance Committee I have found it difficult to comprehend the
financial challenges, the business issues and have the courage to speak up
and have my say. Prior to my retirement I served for over 30 years in the
medical device industry in senior management positions and have a little
knowledge of subjects medical.
To be an effective member of the Commission for Public and Patient
Involvement in Health (CPPIH Forum will involve some considerable time of
absorbtion in our NHS culture.
Competing interests:
None declared
Competing interests: No competing interests
I believe that meaningful involvement of patients is the
key to effective public involvement.
Only if ordinary members of the public are willing to give
their time to sitting on patient forums, completing
questionnaires, and becoming active members of
foundation trusts, will the NHS gain the perspective of
the public.
The problem is how to engage members of the public.
Unfortunately, those who take up invitations to
participate may do so because they have an axe to
grind. Too many of the rest are suspicious of finding
themselves the token patient, presented with a
mountain of incomprehensible documents to read,
sitting unconsulted in endless meetings, and being put
in a position of responsibility without power.
Perhaps members of the public have so little
confidence that their contribution will be valued
because that has been their experience as patients. If
they do not feel part of a partnership with clinicians in
the problems of their own health, they are unlikely to
believe that time on committees is going to be well
spent.
Competing interests:
None declared
Competing interests: No competing interests
Sir, The multifaceted experience of community participation in
developing countries could enlighten the issues pertinently raised by
Florin and Dixon (1). Community participation has been strongly promoted
in public institutions for over 25 years since the 1978 Alma Ata
Declaration. Approaches range from health facility committees, management
of locally generated income (e.g. Bamako Initiative), devolved elected
governments with health responsibilities and community meetings. Their
effectiveness in achieving change, democratic accountability, and dialogue
with professional and bureaucratic powers depends on the adjustment of
participation design to the context. The rationale for community and
patient participation differs - the latter entails negotiations on
diagnosis, treatment, follow up, life mode, and individually tailored
prevention. The two strategies are thus not, as suggested in the article,
substitutes but different in their purpose.
Experience suggests that pluralistic boards of trustees combining
community representatives, civil servants and health professionals can
contribute to: improve quality of care and coverage; reduce corruption,
and patronage; define and apply patients' rights; monitor access to care;
encourage payment modes consistent with solidarity; organise credit for
indigents; penalise irrational utilisation of services; control costs;
favour use of essential drugs; select priority disease control programmes;
organise mutual aid associations and link them to the management of health
facilities (2,3,4). To do this effectively, community representatives
require access to accurate information provided by motivated managers and
professionals willing to collaborate with them.
What are the lessons for industrialised countries? Firstly, medical
practice and health management differ structurally according to whether
they are performed in the public interest or for profit (5). Public funds
should be used in the interest of both the individual patient and the
public. Together with democratisation of management and responsiveness of
health care, public involvement should contribute to the selection of
quality standards for health care delivery and management. Secondly,
transcending the concept of “community”, the social composition of
participatory bodies is critical, at all levels. Strategic planning can
help identify social organisations to be involved in co-management.
Thirdly, biomedical methods alone applied to the evaluation of
“interventions” fall short of reasonable assessment and planning of
participatory mechanisms. A multi-disciplinary (including political)
approach is needed to conceive them. Finally, continuous education,
professional bodies and pressures exerted by social organisations can lead
some health professionals to provide user representatives with information
likely to make public involvement in health care relevant.
1. D. Florin and J. Dixon. Public involvement in health care. BMJ
2004; 328: 159-161
2. H. Annett and PJ. Nickson. Community involvement in health: why is
it necessary? Trop Doct 1991; 21: 3-5
3. H. Van Balen. The Kasongo project: a case study in community
participation. Trop Doct 1994; 24: 13-16
4. D. Levy-Bruhl, A. Soucat, R. Osseni et al. The Bamako Initiative
in Benin and Guinea: improving the effectiveness of primary health care.
Int J Health Manage. 1997; 12 (Suppl. 1): S49-S79
5. JP. Unger, B. Marchal and A. Green. Quality standards for health
care delivery and management in publicly oriented health services. Int J
Health Plann and Manage. 2003; 18 (Suppl.1): S79-S88.
Competing interests:
None declared
Competing interests: No competing interests
Florin and Dixon's article raise important points about the need for
clarity on the issue of increased public involvement in decision making in
the NHS.
Two points are worth emphasizing : First, the potential for the entire
process to be reduced to a tick-box exercise, where trusts co-opt "tame"
representatives to rubber-stamp decisions ; and secondly, the potential
for "professional" public representatives to emerge, whose views are not
necessarily representative of the public's and who turn up as public
representatives on every committee and board.
The process by which the public is involved in making health service
decision needs to be transparent and open, and may require extra effort,
to ensure that the process is indeed inclusive.
Competing interests:
Employed by the NHS
Competing interests: No competing interests
Florin and Dixon’s dissection of the rationale for public involvement
in health care is curious (1). They philosophise about its meaning and
even its desirability when, for everyday NHS purposes, the Health and
Social Care Act 2001 settled the issue. Section 11 of the Act is an
unambiguous “must do”: NHS Trusts, PCTs, Strategic Health Authorities and
Ambulance Trusts must make arrangements so that ‘persons to whom …
services are being or may be provided are, directly or through
representatives, involved in and consulted on’ all aspects of service
planning and operation. This is about more than current patients.
We have copious “how to do it” guidance. Patient and public
involvement is even one of the six pillars supporting the hallowed temple
of clinical governance. Foundation Trust hospitals have been brought
within the statutory public involvement net too. The time for speculating
is over. Now we need empirical evidence that involvement makes a
difference to how services are commissioned and provided and, crucially,
how they are perceived and experienced by users.
Health and social care is a continuum of services from the users’
perspective. Their involvement along that continuum is, after all, only a
process. It should be leading to shared power in decision-making and
genuine user-provider partnerships that improve things for all concerned.
There are no short cuts or quick fixes to this type of involvement, as the
national evaluation we undertook for the Department of Health of the Pilot
Patients’ Forums found (2). Joint health and local government investment
in realistic community development strategies is needed for sustainable
engagement to take root.
It is not a question of needing to shift the emphasis to patient
involvement, as Florin and Dixon suggest, at the expense of the more
diffuse public involvement dimension. Trying to increase the
responsiveness of health services means that every voice counts, not just
patients (3). But they rightly highlight the underdeveloped opportunities
presented by user participation in primary care settings, especially as
many users no longer recognise themselves in a depowered “patient role”.
Our local experience in Wandsworth suggests that user participation
groups in GP practices can create learning opportunities for mutual trust,
responsibility and partnership which will stick when applied on the wider
health care canvas. These benefits should not be overlooked in the dash
for more involvement. Supporting practice-based participation could open
new channels for compliance with consultation and involvement requirements
and create a lasting dividend in the form of complex user involvement
structures reaching out into the community. But it will take investment
as well as good intentions to achieve that.
Andrew Craig, Partner, The Moore Adamson Craig Partnership LLP
andrew@mooreadamsoncraig.co.uk
References
1 Florin D, Dixon J. Pubic involvement in health care BMJ 2004;
328: 159-161
2 MAC Partnership. Building Capacity for Pilot Patients’ Forums: the
experience of recruiter and recruited (November 2002) downloadable from
www.mooreadamsoncraig.co.uk
3 Anderson W et al. Every Voice Counts: primary care organisations
and public involvement. Kings Fund, London: 2002
Competing interests:
Andrew Craig is a partner in The Moore Adamson Craig Partnership LLP, a consultancy specialising in user and public involvement, research, policy and training.
Competing interests: No competing interests
Editor - Florin and Dixon's excellent paper brings coherence and
clarity to what has hitherto been a remarkably muddled debate. Two things
are worth adding.
First, the more devolved and local does public involvement in health
policy development become, the more do the government's national strategy
and targets become givens. For example, there was no public involvement
in the the British government's decision to focus on mortality and cure
(things that are relatively easily measurable) at the expense of long-term
medical conditions which chiefly affect the quality of people's lives.
But that focus has become a given that will necessarily dominate local
health policy development.
If governments wish to provide the sort of healthcare people want,
then there is a real need for public involvement in health strategy
development at the highest level.
Second, there has been and still is a tendency to see public
involvement as something separate from the rest of health policy
development instead of an integral part of it. Dermatology is a
refreshing exception.
The Action on Dermatology (AoD) Programme was established in 2000
chiefly in response to long waiting times. A task group was established
to identify, develop and disseminate good practice in the delivery of
dermatology services. Essentially, and although numbers have varied
slightly over time, the task group consists of two or three
representatives of the Modernisation Agency, two consultant
dermatologists, two dermatology nurse specialists, two GPs actively
interested in dermatology, two patient representatives and a pharmacist.
Everybody within the group has equal status. There is no politically
correct pandering to the patient representatives, of whom I am one, but
our views are weighed equally with those of others and we are most
certainly not 'token patients'.
I believe that it is, in large part, this inclusiveness and
egalitarianism that has made the AoD programme so successful. Its
findings were published in a well-received Guide(1) and are now being
developed further within a dermatology sub-group of the Long Term
Conditions Care Group Workforce Team. So useful have all parties found
the AoD task group as a forum for the exchange of information and ideas
that it has been kept running despite funding for the AoD programme itself
having ceased in March 2003.
Peter Lapsley, chief executive, Skin Care Campaign
(1) Action on Dermatology Good Practice Guide, NHS Modernisation
Agency, January 2003
Competing interests:
None declared
Competing interests: No competing interests
PPIs what are you doing? .
It is necessary that people who have not yet become too sceptical
about the concept of genuine 'public/patient involvement' do give it a
whirl.....but lessons from past excercises should not be
dismissed.....otherwise new members to such forums will be constantly
reinventing the wheel, often given the run about by more experienced
participants of committees or be undermined in other ways. For example by
focussing attention on issues such expenses claims (see latest CPPI
News); or eg., whether members are 'representative', No one individual
from any section, medical, managerial, patient,public or research group,
can represent all members of a community.
There has been one article published by 'spiked on-line' by re the
decision by practitioners in the Camden North London area to 'quietly
refuse' to comply with DoH directives to copy letters to patients. But
despite being the Lead for Patient and Public Involvement in her
locality,this was published as a 'personal opinion'. Is this not the sort
of issue which should be presented to the community by a PPI forum?
Some of the questions raised by the Kings Fund are in fact
highlighted by the questionnaire produced on line by the Commission for
Public and Patient Involvement.They request a wide public response. It
seems a little strange that some of the questions are being asked so long
after the PPIs have been set up though. They might have acessed some of
the many especially 'user-led' studies produced over the past two decades,
which address the questions they raise and to some extent raised also by
the group from Kings Fund. There needs to be committment to taking
forward the the aims of the PPI now.
There is no information about the activities of the PPIs in Wales as
yet.
The r.r. from A D Macleod included no actual information about the
decisions arrived at by the PPI. although his committment to the process
is clear.It would be interesting to read of some of the work carried out
by the PPI Forum by a person designated to do that part of the work.
The information on web by PPI is fairly limited. Communities need to
know where they can access information about the work of the PPIs in the
locality - not just on-line if the PPIs are not to become another closed
activity.
Rather than focus his anxieties about the potential for confrontation by
members of PPIs or obstruction from real partnership by others, as raised
in his letter introducing the qustionnaire, Meredith Vivien, Head of PPI
DoH needs to have faith in support from all participants if yet another
partnership initiative is not going to slide into tokenism.
Competing interests:
None declared
Competing interests: No competing interests