Patients and doctors must change attitudes for public to have real role in decision-making

February 12, 2003

Both doctors and patients need to change attitudes if moves towards greater public involvement in healthcare decision-making are to succeed, according to new research funded by the ESRC.

It is recognised that doctors have been a 'closed' profession and need to be more open, but patients must stop being concerned only about their own experiences and take a more general view of the quality of healthcare, says a study led by Dr Andrea Litva of the University of Liverpool.

The research examined NHS efforts to enhance consumer confidence by increasing transparency and accountability after a period when there have been a series of high profile adverse incidents.

Primary care trusts (PCTs) and groups are responsible for the ordering, buying and quality of local healthcare services, along with 'clinical governance' and involving the public.

It has been assumed that healthcare professionals and users agree with and support the central importance of the public's role.

But according to Dr Litva, neither health professionals nor lay people currently support direct public involvement in 'clinical governance'.

She says: "At no point did either group feel that the public should make decisions. The lay people spoke of 'shaping' decisions and the professionals of public 'input'." The study warns that creating a culture shift among lay people will require time and support from primary care trusts, which will have to go beyond simply developing strategies for public involvement. If lay people's attitudes are not changed, moves towards involving the public in decision-making will fail.

In-depth interviews were carried out with members of Liverpool primary care trusts, with lay people taking part in focus groups. The favourite type of involvement put forward was having a lay 'overseer' or 'watchdog' who would attend PCT meetings but not necessarily participate. People were concerned that by participating as part of the board, lay people might become 'one of them' and lose objectivity.

The role of the lay person was to ensure that public concerns were addressed effectively, ask difficult questions and feed back information to the public. Lay people felt that they would need a spur to be involved directly in decision-making, usually having experienced poor care in the past. And doctors were particularly concerned that groups with personal agendas would dominate and so limit proper public representation.

Professionals recognised the new emphasis on accountability to patients, the public, the local PCT board, the General Medical Council and to each other. They said GPs needed change and for their culture to be challenged by introduction of standards and targets.

While lay people wanted public involvement because they pay for the service through taxes, doctors emphasised that it was needed to increase confidence in the NHS. Professionals and lay people wanted public involvement to ensure healthcare was designed and operated for patients, not doctors, and would therefore be more responsive to the priorities and needs of the sick.

Patients spoke of 'a doctor who listened' or 'getting an appointment' as key features in judging quality. They were generally very positive about the quality of care they received, though there were stories of expectations not being met.

They criticised the fact that quality of service received depended on which part of Liverpool they lived in. But they felt that any assessment of a doctor's performance should be left to the experts and not involve users.
-end-
For further information, contact: Dr Andrea Litva on 0151 794 5603, e-mail: litva@liverpool.ac.uk Or Iain Stewart or Lesley Lilley at ESRC, on 01793 413032/413119

Economic & Social Research Council

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