In the process of developing and producing guidelines, we should not forget that patients, too, need to have evidence-based information. By this I mean that all agencies involved in the clinical effectiveness agenda need to produce a version for patients – or do they?
My involvement with the Scottish Intercollegiate Guidelines Network (SIGN) over the last few years has left me questioning the virtue of such organisations doing anything more than identifying 'key messages' for patients – which serve simply to 'guide' patients through guidelines.
When SIGN and other organisations start to produce patient leaflets based on the evidence, it all becomes messy. After all, it's not what they're there for, nor funded for, nor where their expertise lies. Moreover, current guidelines usually relate to a specific treatment or disease. Patient information based only on a specific area of treatment limits the potential impact of the messages for patients. Patients deserve evidence-based patient information from a raft of SIGN guidelines which better reflects living with a disease, e.g. diabetes or heart disease.
Our experience, in SIGN, of key messages and developing a SIGN-POST for patients is evolving. In our eagerness, we talk about translating the guidelines for patients but we differ in our views of utility, distribution and target audiences. Worthy principles are not matched by resources, nor is there a coherent strategy that draws together agencies and providers.
My view is that we need to develop an independent 'brand' for accredited patient information. We also need an independent agency to facilitate and coordinate the products from these clinical effectiveness organisations. Such an agency will pursue evidence-based patient information involving patient groups, voluntary organisations etc and rigorous patient-focused production methodologies. It will interface with SIGN and others, but the information will be produced primarily for patients and not as a medical byproduct.
The rigours of guideline development methodologies mean that there is infrequent reference to soft or grey areas of evidence. It is often these hreas where patients seek out answers, e.g. alternative drugs or therapies, new drugs, or new diseases.
The rich sources of qualitative research by voluntary organisations, health councils and others are rarely searched. The medical magnet pulls to the medicalisation of disease – to the science rather than the art – and hence leads to an over-reliance on the appliance of that science.
Two of the most common complaints received from patients are poor communication (not being listened to) and lack of information (not being involved). Patients need to know what works and what doesn't, and need to be assured they are getting the most up-to-date care.
We need quality information to encourage and support patient involvement in decisions about care and treatment. It should contribute to effective consultation and communication. Only then can we start to concentrate on the process of information giving as well as the content of the message.
Patients generally don't know what they don't know, whereas clinicians generally do know what they don't know. There are large gaps in medical knowledge and science cannot always define the best care. This uncertainty, combined with imperfect processes of analysing evidence and the 'imperfections' of individual patients, adds to the complexity of understanding and presenting risk.
Yet guidelines themselves are risk-reducing tools for use by both doctors and patients. We are likely to under-estimate significantly the power of informed patients to improve practice until we move evidence-based patient information higher up the agenda.
- See Getting the most from patient involvement in guideline development in this issue