Published: 16/01/2003, Volume II3, No. 5838 Page 26 27 28
Primary care patients have had little practical opportunity to discuss and set standards they expect of their service.
Keith Stevenson and colleagues set out to change that
How should patients be involved in their own care? Government policy for the NHS stresses a commitment to patient and public involvement and making services responsive to users.Yet it is far from clear how partnerships with patients and the public should work.
There is increasing acknowledgement that taking the patient perspective into account may lead to better targeted and more effective services based on the needs and standards identified by patients. The Commission for Health Improvement has proposed a model in which patients' experiences will be central to its reviews.
The government has also made explicit commitments to improve openness and accountability; to develop more locally responsive services and to promote local ownership of NHS services.Department of Health guidance on patient and public involvement recommends that 'clinicians, patients, carers and the public can come together to discuss the elements of good-quality care and how to deliver it consistently and appropriately'.
1Patient organisations have argued that patients are able to provide information on the quality of care that health professionals provide. Specifically, patients can offer valuable insights into access to services; delivery of treatment and care; accessibility, efficiency and effectiveness of care delivery across different sectors (eg between primary and secondary care; and between health and social services); patient and carer information and support needs.
But the difficulty in involving the public in primary care is establishing a way of patient information being accessed and valued by the service it is being asked to advise. Though patient involvement is not a new concept, there are few examples of patients in primary care being given the opportunity to discuss and set the minimum standard of service that they want.
2Our project tested a methodology for doing this.
The research was set in East Lindsey primary care group, now part of East Lincolnshire primary care trust, between May 2001 and October 2002. The project was funded with£58,000 from Trent region's NHS building bridges fund. It aimed to establish patients' quality standards for primary healthcare services against which the PCG's 18 general practices would then agree to be assessed. Nine of the 18 practices in the PCG agreed to take part.
A group of 92 patients was established by asking practices to circulate a letter about the project to patients with coronary heart disease or cancer and by placing advertisements for volunteers in the local press and pharmacies. Twelve focus groups were held in which participants prioritised 50 issues. Phone interviews were carried out with 10 patients who could not attend one of the focus groups. From these, the top 20 standards were taken for general practice (see table 1).
The nine participating practices agreed that their practice managers would meet representatives of the project team and discuss how the practice could demonstrate how the standards were being met.
These practices were then given three months to prepare for their actual assessment.
To measure service assessments against patient perceptions, the project team organised a patient survey in each practice using a statistically appropriate sample size. Each practice then received written feedback indicating the number of standards they were meeting (according both to selfassessment and patient assessment) presented in a way that allowed comparison with other practices.
The graph overleaf shows the number of standards that each practice felt it was achieving (left bar) and the right bar indicates what 75 per cent of a sample of patients from their practice felt was being achieved. It illustrates a discrepancy between the standard of service the practices thought they were providing, compared with what the practice patients thought was being provided.Only in one of the nine practices did patients rate the standards of service more highly than the practice rated itself.
It should be noted that at the time of assessment, most practices had changed some procedures in line with the standards, and it may take more time for awareness of changes to filter through to patients. The PCT quality improvement staff who undertook the assessment visits found the patientgenerated quality standards process to be an excellent vehicle for discussing how quality improvement can be addressed. Even though the project ended in October, the assessment process is to be continued by East Lincolnshire PCT quality co-ordinating staff.
We found that the project gave patients a structured opportunity to put forward their views on how services could be improved for them in their locality.
While East Lincolnshire PCT has been supportive of the project and patients were keen to be involved, there was clearly resistance towards patient involvement in some practices.This resistance needs to be examined and removed if patient involvement is to be encouraged to become an effective agent for change. The research also generated patients' standards for the PCT (see table 2).
Patient involvement is at the heart of the government's plans to modernise the health service and PCTs now have a statutory duty to involve patients in their planning and delivery of care.The findings from studies like ours will be crucial to developing a better understanding of how patient involvement can be made to work in the changing world of primary care.
1Secretary of State for Health. Patient and public involvement in the new NHS. Department of Health, 1999.
2Crawford MJ, Rutter D, Manley C, Weaver T, Bhui K, Fulop N. Systematic review of involving patients in the planning and development of health care. BMJ 2002; 325: 1263-1265.