interviews

Shared decision making

Getting patients more involved in decisions about their own care can have a positive effect on health outcomes, and even on NHS resources, while also being a worthwhile aim in its own right. NHE discusses the Shared Decision Making programme with its national clinical lead, Dr Steve Laitner.

Shared decision making is an idea and an initiative with many influential backers in health policy circles – but spreading its benefits across the NHS will be a slow and challenging process, since it flies in the face of some existing cultures and practices.

One way it is being promoted by the Right Care Shared Decision Making programme, based at the NHS Midlands & East cluster, is via innovative ‘patient decision aids’. There are 12 of these at the time of writing, with many more coming soon – around 38 are planned by the end of March.

The step-by-step guides, which can be found online, describe the health problem, treatment options and decisions to be made, allow comparisons between different options, help patients weigh up the pros and cons, and ultimately help them make the best treatment decision for them.

They can be printed out by the patient, or by the clinician during a consultation, and mobile app versions are also in development.

But Dr Steve Laitner, national clinical lead for the Right Care Shared Decision Making programme, said the decision aids alone aren’t enough – it’s also important for clinicians to engage.

He explained: “It will be difficult to make progress if you haven’t got a receptive culture and if you haven’t got a way of getting the decision aid to patients, or support for shared decision making to clinicians, or if patients don’t realise they’ve got a choice and clinicians don’t realise that part of their job is supporting the patients to make the right decision for them.

“The decision aids certainly help, but they’re not sufficient on their own.”

Evidence-based decision aids

The aids, grouped by condition rather than treatment – existing ones include cataracts, osteoarthritis of the knee and stable angina, for example – are underpinned by evidence developed by BMJ Evidence.

A multi-disciplinary team of medical advisors, patients and carers have supported and tested the tools, which Dr Laitner, a practising GP, called “credible and evidence-based”.

But he added: “I think there is a culture in the NHS where many clinicians don’t necessarily feel comfortable with very ‘active’ patients who want to be involved in their care and involved in decisions about their care. I think we’re getting better but it’s not where medicine has historically come from – we’ve historically being quite paternalistic in our approach.

“A typical response I get is ‘we don’t need patient decision aids because we’ve got clinical guidelines’. That is interesting because in most cases there’s no one single treatment that’s right for a patient: there is normally a choice that does depend on patients’ own values and preferences as well as their individual clinical need, which varies very much from person to person.

“Another typical response is that there’s not time in an appointment to spend time helping the person make a personal decision – but I think maybe the best phrase I’ve heard about this is that the patient is the ‘greatest untapped resource in healthcare’.”

‘A long way to go’

He insists that clinicians benefit from shared decision making just as patients do, especially if patients ‘do their homework’ before and after appointments with GPs to make best use of their time.

But he acknowledged: “I think we’ve still got a long way to go to be honest. At this stage in the programme we’re focused on working with certain clinical teams, and developing resources including the decision aids.”

Patients are not alone when it comes to getting information and making decisions: the programme also offers ‘health coaches’.

As Dr Laitner explained: “Often people like to be able to talk to somebody to help them through the decision making process. That may be their own clinical team, their nurse or doctor, but we’ve also commissioned some nurses who are on the phone, who will be able to talk through the decision with patient. The programme is a national programme and the coaches are there for anybody to use.”

(Above image shows an Oldham GP with a patient)

Incentives

There are indirect benefits to the NHS as a system too, aside from just health outcomes – for example, a current review suggests shared decision making can reduce the risk of complaints and litigation, reducing the chance of commissioners finding themselves on the wrong side of the law.

Dr Laitner said: “People have talked about incentives and the way we measure patient and carer feedback to help us understand what’s going on; I think there’s been a need for a very long time for patients to be more actively involved in decisions about their care.

“In fact the national inpatient survey, going back to about 1992 shows that half of patients in hospital want to have been more involved in decisions about their care – so it’s been a problem for a long time.

“It was very helpfully highlighted by the previous secretary of state, Andrew Lansley, in the ‘no decision about me without me’ phrase. The use of that phrase increased the status of the need for shared decision making and it was incredibly useful.

“The problem is, a lot of people don’t realise how big a problem it is and the problems it causes [when patients are not involved enough in decisions about their care].

“We might get the diagnosis wrong, then if we don’t really listen to people and help them make the decision that’s right for them, we may well get the treatment wrong as well.”

Dr Laitner cited a “very good paper” by Glyn Elwyn and Chris Trimble for the King’s Fund published last year, ‘Patient’s Preferences Matter: Stop the silent misdiagnosis’, which makes this exact point.

Shared decision making – not rationing

In a world of much greater patient involvement in diagnosis and treatment decisions, some might foresee a resourcing problem.

But Dr Laitner said: “In one way I see shared decision making as almost an ‘antidote’ or an alternative to rationing. So whilst shared decision making in the NHS needs to be mainly structured around what treatments are on the NHS ‘menu’ so to speak, the evidence is, internationally, very suggestive that if patients are supported through decisions aids and telephone coaching and the like to make the decision that’s right for them, they tend to chose less invasive treatment options.

“There’s not only a moral imperative to do it [shared decision making], there’s also an economic imperative. It is what I’d call an ethical form of demand management. It’s not used as demand management directly, but its by-product is that patients are thought to make decisions that are more likely to be less costly and less invasive.”

He gave the example of the Oxford Knee Score, saying: “The score’s not meant to be used as a rationing tool. If you do use it like that, you’re going to end up denying some people treatment that would help them, but equally offering a treatment that some people wouldn’t actually choose if they had all the information. So it’s too crude a tool to use in that way.

“However, if you use a decision aid you possibly manage the demand even more effectively and you’re more likely to get the right people to the right intervention.”