6. Patient involvement

Summary

This chapter is about patients, and how their actions and attitudes can improve safety.
It will concentrate on ‘tools’ or ‘initiatives’ which are focussed on the role of patients themselves
making a contribution to improving their own, and potentially fellow patients’ safety, and on developing
a culture which is more conducive to improving patient safety. In a recent study of this topic it was found that
there is relatively little research or evidence on the effectiveness of such measures, despite health care systems across the world commonly proclaiming the importance of ‘patient empowerment’. Clearly there is a need for more, but there is no shortage of existing or potential initiatives. Necessarily, the nature of the existing evidence is often not so scientifically robust as other studies, and will include qualitative research and ‘expert opinion’. Nonetheless, it would be wrong not at least to take stock of the current state of play and raise awareness of what can and perhaps should be done in the future.

We will look at four kinds of ‘tool’ or ‘initiative’, mainly from the United Kingdom:

– for empowering patients to make patient safety interventions
– for eliciting reports/information from patients on patient safety incidents
– for involving patients in patient safety work more generally
– for the development of a culture which is more conducive to patient safety – a ‘patient safety culture’.

There is relatively little research evidence on the efficacy of patient interventions on improving patient safety or preventing errors. Coulter and Ellins provide a useful summary of such evidence as they were able to find. (9) Yet, there appears to be fairly widespread agreement that the empowerment of patients to intervene in or even to manage their own treatment can both help improve safety and is the right thing to do in principle. Anecdotal evidence from the National Patient Safety Agency (NPSA) also suggests that the wider involvement of patients in identifying risks and solutions has beneficial effects. (10) In this section we look at some examples of tools / initiatives for supporting such empowerment or involvement of patients. The examples given here are not exhaustive. They are intended to stimulate discussion as to what should be tried and tested with further research:

• Hand hygiene


• Diagnostic imaging/tests


• Decision-making


• Experiences and results achieved


• Patient reporting of incidents


• Involvement in planning


• Patient safety culture

Systems for awarding compensation following clinical errors or negligence is a recurrent theme in discussions around creating the right patient safety culture. In some circles, particularly amongst health professionals, the concept of ‘no-fault’ compensation schemes has become popular. The same enthusiasm is not necessarily shared by patients groups or States. ‘No-fault’ compensation schemes as opposed to litigation through the courts are seen as part of a ‘no-blame’ culture. The theory is that injured patients will find it easier to get some compensation whilst health professionals will not feel so threatened or afraid to report incidents, and avoid adversarial and costly court actions. However, when the English chief medical officer’s working group reviewed these ‘no-fault’ compensation schemes for his report Making Amends, the idea of a no fault compensation scheme for England was rejected. (11)

It was found both that existing schemes were not strictly speaking ‘no-fault’ (in that they still required establishing that an error had occurred) and that they had down sides in practice. For example, given the huge scale of estimated medical error which currently goes uncompensated, the cost to the State of making compensation so readily available may not be affordable. Also, most schemes looked at involved some form of capping or tariff system for compensation. Patient groups such as Action against Medical Accidents pointed out that whilst this might mean some people who might not otherwise have received compensation would get some, it would not necessarily be what patients or their families needed or deserved. Consequently, some of the most needy and deserving cases might be ‘short-changed’ by such schemes. There were also points of principle raised such as whether people should be ‘compensated’ if there had been no fault. Some patient groups responded that patients in this situation just wanted appropriate good quality care. On the other hand, research conducted for Making Amends confirmed what Action against Medical Accidents had always said – that what matters most to patients who have suffered as a result of negligence is assurance that errors have been recognised and acted upon. Simply allocating money on a ‘no-fault’ basis, without admission of negligence, would not meet that need. The resultant legislation in England, the NHS Redress Bill, instead sets up an NHS Redress Scheme as an alternative to litigation for smaller clinical negligence claims. It is an administrative scheme run by the NHS itself, whilst still using the legal test for negligence as the courts (but without the rigorous testing of evidence through legal representation or independent adjudication). The proposals have been heavily criticised for their lack of independence and failing to use an alternative test for qualifying for compensation or ‘redress’ than the courts. (Such a test invariably leads to pressure to identify individual negligence and ‘blame’). The government rejected the suggestion that the approach adopted by Denmark could be a better model for an administrative scheme.

The Danish Patient Insurance Association runs an administrative scheme which is not a ‘no-fault’ compensation scheme and does not use the legal test of negligence, and is independent. Administrative schemes of different types also exist in Finland, Sweden and France. Unfortunately, there is very little research evidence as yet as to the effect of these different schemes on attitudes / culture of patients and health professionals. Research in this area would be useful in helping identify the best means of providing for compensation where it is due, whilst developing a genuinely ‘open and fair’ patient safety culture.