4th May 2011
A BMJ editorial and a feature article reporting an expert discussion mark the signing of the Salzburg statement on shared decision making (reproduced at the end of this review). Patient decision aids (PDAs), such as those produced by the NPC, may be helpful in supporting shared decision making.
The editorial points out that policy makers in the UK have advocated a stronger role for patients in decision making, in the NHS constitution and as a central part of current NHS changes: “no decision about me, without me”. However, the most recent national patient survey suggests that one in three patients in primary care and one in two patients in hospital would have liked greater involvement in decisions about their care. The editorial goes on to discuss what the authors call the “challenging territory” of a “re-conceptualisation of the roles and responsibilities of patients and health professionals in improving health” which, they say, is “deeply counter cultural” because it challenges the (perhaps unconscious) belief of some health professionals on the one hand, that they know what is best for the patient and that patients are not able to understand complex information and are not emotionally ready to make decisions; and on the other the belief of patients that their doctor or nurse is usually making the best decision.
As a former Chief Executive of the Picker Institute Europe has written, patients’ desire to play an active role in decision making varies, and evidence suggests health professionals are not always very good at predicting what role patients want to play. However, shared decision making requires that health professionals have the necessary information to hand and are able to give patients sufficient and appropriate information in a format that they can make sense of and understand.
Support for professionals and patients
NICE guidance on involving patients in decisions about prescribed medicines and supporting adherence recommends using, among other things, symbols and pictures to make information accessible and understandable. One way of doing this is the use of patient decision aids (PDAs). PDAs have been described as “evidence-based tools designed to prepare clients to participate in making specific and deliberated choices among healthcare options in ways they prefer. Patient decision aids supplement (rather than replace) clinician’s counselling about options.” A Cochrane review found that, compared to usual care, using PDAs led to patients having greater knowledge and lower decisional conflict related to feeling uninformed or feeling unclear about personal values. Their use reduced the proportion of people who were passive in decision making, and reduced the proportion of people who remained undecided. Exposure to a decision aid with probabilities resulted in a higher proportion of people with accurate risk perceptions.
Many PDAs are intended for use by patients largely away from the consultation, to prepare for the discussion with a health professional. Examples include the three PDAs available on NHS Direct. The PDAs on the NPC website are intended for use by health professionals within the consultation, to support and augment their presentation of the options available to patients. Since 2007, we have developed a number of PDAs and more than 25 are currently available to download and use. The single most popular of our PDAs is the one on statins for prevention of cardiovascular disease. NICE highlighted this resource in its guidance on lipid management.
Feedback suggests that the clear majority of professionals, patients and carers who have used these PDAs find them helpful, and feasible to use within the time pressures of a normal consultation. We welcome feedback on our PDAs and we are currently inviting users to complete a short anonymous survey on their experiences with them, which takes about 5-10 minutes to complete.
Salzburg statement on shared decision making
We call on clinicians to:
- Recognise that they have an ethical imperative to share important decisions with patients
- Stimulate a two way flow of information and encourage patients to ask questions, explain their circumstances, and express their personal preferences
- Provide accurate information about options and the uncertainties, benefits, and harms of treatment in line with best practice for risk communication
- Tailor information to individual patient needs and allow them sufficient time to consider their options
- Acknowledge that most decisions do not have to be taken immediately, and give patients and their families the resources and help to reach decisions
We call on clinicians, researchers, editors, journalists, and others to:
- Ensure that the information they provide is clear, evidence based, and up to date and that conflicts of interest are declared
We call on patients to:
- Speak up about their concerns, questions, and what’s important to them
- Recognise that they have a right to be equal participants in their care
- Seek and use high quality health information
We call on policy makers to:
- Adopt policies that encourage shared decision making, including its measurement, as a stimulus for improvement
- Amend informed consent laws to support the development of skills and tools for shared decision making
- Much of the care patients receive is based on the ability and readiness of individual clinicians to provide it, rather than on widely agreed standards of best practice or patients’ preferences for treatment.
- Clinicians are often slow to recognise the extent to which patients wish to be involved in understanding their health problems, in knowing the options available to them, and in making decisions that take account of their personal preferences.
- Many patients and their families find it difficult to take an active part in healthcare decisions. Some lack the confidence to question health professionals. Many have only a limited understanding about health and its determinants and do not know where to find information that is clear, trustworthy, and easy to understand.
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