'Choice is more complicated for cancer care than for a single surgical operation'
'Information gives peace of mind' said a contributor to our recent study on patient choice for cancer patients.
We wanted to know whether data such as hospital star-ratings and success rates for surgeons could be used to assess cancer services.
The 2000 cancer plan led to the creation of 34 cancer networks to co-ordinate care between trusts and primary care services, share expertise and support best practice.
The NHS improvement plan sought to increase patient choice over their care, and encourage providers to compete for patients on quality. This market approach conflicts with the managed system of cancer networks, but can information offer a connection between managers and patients?
After a survey of cancer network managers' views of information, we held two focus groups for patient representatives to discuss supporting patient 'choice' in cancer care.
With cancer, patients need guidance and time to adjust. They seek information to understand how their disease has developed and options for treatment. Only then will they consider where that service might best be provided.
Choice is more complicated for cancer care than for a single surgical operation, as there are several points of contact along the course of care - from GP referral to investigation, treatment options, follow-up and palliative care if necessary. Information to support choice should describe the characteristics and performance of each provider.
Our informants wanted a good-quality local service as their preferred option, where possible. And they wanted information to be available throughout the patient pathway.
Patients seek to access the full range drugs and services they believe they need, including expensive or 'research' drugs. They may also seek an individual specialist. Yet current multi-disciplinary care requires collaboration between clinical groups. Cancer treatment depends on the team as much as the individual; and the quality of care also depends on good co-ordination between the hospital and primary care.
Data can support patient choice in cancer care as it describes group, rather than individual, experience and there is value in knowing the perspectives of others. Numbers can be 'objective', smoothing out variations over time.
Waiting times are the current NHS measure of hospital performance for cancer care, but data sets describing wider aspects of hospital performance, including activity and standards, patient satisfaction and survival, are needed to support choice.
Data needs to be presented clearly. While some informants sought statistics to show 'which hospital is good and which to avoid', they recognised that data needs to be interpreted, especially to indicate whether differences between hospitals may be due to chance.
Data supplements other sources of information for patients, including word-of-mouth recommendations and media reports.
Clinicians also need comparative data on services, for themselves and in discussions with patients. Our informants thought that choice should be assisted, but not necessarily encouraged: trust in the doctors and nurses, after all, remains an important therapeutic link, and staff need to guide patients through the options available.
Who should provide this data? Our informants said it should not be voluntary patient groups - the NHS cancer network teams should pay more attention to providing information about services. This would enhance the links between managers, clinicians and patients.
Mark McCarthy is professor of public health, Susan Michie is professor of health psychology, and Dawn Wilkinson is a research fellow, University College London.