This week NHS leaders published the Five Year Forward View setting out their vision for the future of the NHS in England. One of the key themes was empowering patients. To achieve this vision will require the NHS to 'do more to support people to manage their own health - staying healthy, making informed choices of treatment, managing conditions and avoiding complications'. So how and why should the NHS involve patients more in decisions about their care?
Developments in shared decision-making
The idea of shared decision-making is not new. There is already national policy to support it. The government committed to ‘no decision about me without me’ in the White Paper Liberating the NHS and new legal duties were introduced through the Health Act.
A Cochrane systematic review found that the use of patient decision aids increases patients’ knowledge, resulting in them having more accurate expectations. Treatment choices then more accurately reflect patients’ true preferences.
The Health Foundation has supported sites across the UK, including Cardiff and Newcastle, to implement shared decision-making through the MAGIC programme and recently published a review of the evidence on person-centred care.
Despite this, the majority of patients’ decisions are still made without them being fully informed about treatment options. Clinicians are still making decisions in the face of ignorance about the preferences and values of patients. Professor Al Mulley, a leading proponent of shared decision-making, has coined the term 'silent misdiagnosis’ to describe this. It also means that commissioners are buying care whilst ignorant of public preferences.
So why does this matter?
This matters for both patient and clinician. Treating someone who would not have chosen that course of action if fully informed of the risks and benefits falls well below the standard of patient-centred care and at worst is unethical.
Patients tend to opt for more conservative treatment choices when fully informed. So we are spending money on care that is neither needed or wanted.
One study of the implementation of decision support in Group Health in Seattle reported per patient savings of roughly $2000 for individuals with knee osteoarthritis and $3000 for those with hip osteoarthritis. However, a recent systematic review found the evidence of system-wide savings from the implementation of shared decision-making was still lacking.
What can be done to improve patient involvement in decisions?
Patients need to feel that they have a major role in decisions and that they can speak up and challenge health professionals. Health professionals need to ‘legitimise’ this expectation. The latest GP Patient Survey shows that a quarter of people don’t think their GP is very good at involving them in decisions about their care.
So how might we overcome this mismatch between patient and clinician perceptions?
Glyn Elwyn and his team have developed 3 simple questions:
- How much effort was made to help you understand your health issues?
- How much effort was made to listen to the things that matter most to you about your health issues?
- How much effort was made to include what matters most to you in choosing what to do next?
AQUA in North West England has been testing the measure (CollaboRATE). Further research and testing is planned but initial findings are positive; it is quick and easy to use and discriminates between services. The measure holds out the possibility of systematically and routinely collecting information from patients on whether what matters to them was taken into account when planning the next steps in their care.
Trish Greenhalgh and colleagues recently wrote about a new approach to evidence based medicine. One of the features of this is to ’individualise the evidence’, in order to agree the best course of action for a particular patient at that point in their illness or condition.
Perhaps we need a new evidence base that combines not only what we know from clinical trials about the effectiveness and cost effectiveness of treatments but data about what matters to patients and what actually happens in the real world. Measuring what matters will be an important first step in delivering on the vision for an NHS that fully engages patients.
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