This guest editorial has been written by Dr Angela Coulter who built on this topic when she presented Expert on Call on 18th February 2010. Click here to listen to a recording of the event.

Helping patients make treatment decisions

Nowadays most people would agree that patients should be involved in decisions about their care, but this is far from an everyday reality in the NHS. Many patients feel uninformed and uninvolved. About 50% of inpatients and 40% of general practice patients would have liked more say in treatment decisions, according to national patient surveys. Indeed patients place much greater importance on participation in treatment choices than on choosing where to be treated, yet the policy emphasis has been on extending hospital choice, not treatment choice. What can be done to redress the balance?

Preference-sensitive care

While some tests and treatments are of proven effectiveness and the situations in which they should be used are well understood and clear cut, many others fall into the ‘preference-sensitive’ category. In these cases scientific evidence is either lacking altogether or the benefits and harms are finely balanced. Judgments are quite difficult because of the scientific uncertainty, often leading to wide variations in rates of use because doctors have different views on the appropriate treatment threshold.

Instead of relying solely on doctors’ assessments of the risk-benefit ratio, it is important that patients are fully informed so they can choose whether or not to have the test or treatment. Examples include elective surgical procedures such as hysterectomy, prostatectomy, knee replacement and coronary artery bypass graft; treatments such as hormone replacement therapy, statins for high cholesterol, anti-depressants, and infertility drugs; tests for prostate cancer, colon cancer, osteoporosis, genetic screening; and many others.

Shared decision-making

Shared decision-making is a process in which patients are involved as active partners with the clinician in clarifying acceptable medical options and choosing a preferred course of clinical care. The doctor and patient must work together to recognise and clarify the problem, discuss options and uncertainties, clarify the patient’s values and preferences, agree a course of action and implement the chosen treatment.

Shared decision-making is appropriate in any situation when there is more than one reasonable course of action and no one option is self-evidently best for everyone. This situation is very common since there are often many different ways to treat a health problem, each of which may lead to a different set of outcomes. In these cases the patient’s attitude to the likely benefits and risks should be a key factor in the decision. The principles of shared decision-making ought to be observed whenever clinicians have to obtain informed consent or communicate risks.

Patient decision aids

There is consistent evidence that patients tend to opt for less invasive and less costly treatments when they are fully informed. Informed involvement in treatment decisions leads to more realistic understanding of benefits and harms, more appropriate decisions and reduced risk-taking. However, the logistics of providing high quality information about options across a large number of treatment and elective procedures is difficult. Clinicians may not have the requisite skills and are often too short of time to accomplish shared decision making with their patients.

Evidence-based patient decision aids have been developed to give patients the information they need. There are now a large number of these, many of which were developed in North America but some are home-grown. They take a variety of forms including web applications, videos/DVDs, computer programmes, leaflets and structured counselling.  Most share the following three characteristics: they provide facts about the condition, options, outcomes and probabilities; they help to clarify patients’ evaluations of the outcomes that matter most to them; and they guide patients through a process of deliberation so that a choice can be made that matches their informed preferences.

Use of evidence-based decision aids for patients has been shown to lead to improvements in knowledge, better understanding of treatment options and more accurate perception of risks. Decision aids help to increase patient involvement in decision-making and increase their confidence in the process. They also produce a better match between patients’ preferences and the treatments chosen. Studies that have measured economic outcomes have shown that patients involved in a shared decision-making process tend to choose more appropriate and often less expensive treatments. Several trials have shown that decision aids can lead to a significant reduction in rates of elective surgery with no adverse effect on patient satisfaction or health outcomes.

Implementing decision support for NHS patients

A strategy to strengthen shared decision-making in the NHS would need to include the following ten steps:

1. Recognise that patients are decision-makers and as such need reliable, evidence-based information about treatment options and outcomes
2. Ensure that all patient information (e.g. on NHS Choices) meets this standard
3. Establish a patient decision support service in each SHA with telephone and email access
4. Develop a (virtual) library of patient decision aids
5. Ensure these are kept up-to-date and evidence-based
6. Train clinicians in the principles of shared decision-making
7. Encourage patients to ask questions about options and outcomes
8. Encourage GPs to ‘prescribe’ decision aids prior to referral
9. Incorporate access to decision aids in outpatient clinics
10. Monitor levels of involvement and decision quality in patient surveys

Dr Angela Coulter

Director of Global Initiatives at the Foundation for Informed Medical Decision Making

Angela's Expert on Call WebEx, Involving patients in treatment decision, took place on Thursday 18th February 2010, at 4pm.  Click here to listen to a recording of the event.