Please stop muddling shared decision-making and provider choice

Government departments are barred from making policy announcements during elections, so there’s always a flurry of them after the purdah period has ended. The aftermath of the recent local government elections was no exception. Hot on the heels of the publication of the long-awaited NHS Information Strategy came a document entitled No decision about me without me: further consultation on proposals to secure shared decision-making. As a long-time advocate of shared decision-making, I leapt on this as soon as it appeared on the Department of Health’s website, but was astonished to see that, despite its title, it wasn’t about shared decision-making at all, but about provider choice.

Now I’ve got nothing against offering patients more say about from whom, when and where they receive services. Indeed, as The King’s Fund study into patient choice led by Anna Dixon showed, this type of choice is quite popular. Anna and her colleagues found that most patients were keen on being offered a choice, even if they chose to remain at their local hospital, but many GPs were ambivalent or antagonistic to the idea, with the result that less than half of eligible patients were offered the choices they were entitled to. No doubt this is why the government keeps plugging away trying to remove the barriers to implementing their provider choice strategy, in the hope that this type of competition will help to raise quality standards. But this has nothing at all to do with shared decision-making, which is an entirely different concept.

Shared decision-making, which has been researched and written about in this country and internationally for more than two decades, has a very specific meaning. In a recent report by The King’s Fund, Making shared decision-making a reality, Alf Collins and I explained that it is a process in which clinicians and patients work together to select tests, treatments, management or support packages, based on clinical evidence and patients’ informed preferences. It involves the provision of evidence-based information about options, outcomes and uncertainties, together with decision support counselling and systems for recording and implementing patients’ treatment preferences. Unlike provider choice, it’s well-supported by evidence of beneficial effects, and it’s even more highly-rated by patients.

A new report from The King’s Fund by Al Mulley and others, Patients’ preferences matter, outlines how clinicians’ failure to involve patients in decisions about their care amounts to ‘a silent misdiagnosis’. They argue that the failure to diagnose patients’ treatment preferences is every bit as dangerous as failing to diagnose disease correctly. Pointing to examples of ‘breathtaking gaps’ between what patients actually want and what doctors think they want, they call for a co-ordinated effort across the NHS to tackle this serious defect in clinical decision-making.

It is therefore a huge pity that the government has chosen to ignore the large and important body of evidence about the rationale for engaging patients in decisions about their clinical care, which is almost totally absent from its ‘shared decision-making’ report. This is particularly disappointing given the emphasis placed by the Prime Minister and the Secretary of State for Health on the importance of the concept ‘no decision about me without me’ prior to and post the last election. They have unhelpfully muddled two entirely different topics, creating confusion at a time when NHS staff are crying out for greater clarity. And in doing so, they have ignored a crucial clause in the Health and Social Care Act that places a duty on commissioners to ensure that individual patients are involved in decisions about their treatment.

Read Anna Dixon's related blog: Are we wasting money on care that patients don’t want?

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#1196 Andrew Harding
Bournemouth University

I could not agree more. I'd like to offer one reason as to why 'shared decision making' seems to have been merged with the concept of choice;

'Choice' is sexy soundbite, whereas 'shared decision making' is not...

It's got all the earmarks of being conceived by a whitehall policy wonk

#1197 Pip Hardy
Director, Patient Voices Programme
Pilgrim Projects

Well said, Angela. It would be wonderful if the evidence of experience, that is, the experience of patients and their carers, was as highly regarded as the evidence of RCTs on which most evidence-based medicine relies? There is much to be learned by listening to the stories of the people who receive healthcare.

#1198 nosapience

Agree with you wholeheartedly .. how can we stop people with a little knowledge conveniently redefining language for their own purposes.

Most things called choice, really mean no-choice, have it or don't have it, it means consent. Choice exists where there are a small number of similar options to choose from with direct cause and effect relationships ie you'll get what you choose.

But decision making is contextual and a considerably more complex cognitive mechanism that is mostly neither rational nor objective. Gambling and guessing aside (which is down to luckiness), the most complex decision making requires gathering fragments into a coherent narrative that articulates a preferential future state.

IOW: "this what I want when I get there"!

#1199 Margaret Hughes
patient/lay representative

Having just finished reading the Further consultation on proposals to secure shared decision making document I thought that I had totally misunderstood the shared decision making agenda. I am so pleased that I am just a victim ( again) of the powers that be fudging the patient involvement issue. Maybe if more patients and fewer bureacrats designed the policies and legislation we would be there by now.

#1200 Beverley Lawren...

Well said. Just look at the cherade of 'informed choice' in maternity care. If the women do not agree with what is proposed they are continually badgered (repeatedly informed) until they give in. Bullying is rampant.

#1201 Gerald Ward

As someone who has recently felt he had to change doctors, due to what I must admit myself is a contentious issue, none the less, due to a complete disagreement with getting something put on my medical record for what I consider in my best interests with regards to both peace of mind and further protection against a similar event happening again, for potential legal reasons I cant be specific(my apologies for that) but I feel very strongly that if the patient request something be put on their record for good reason provided of course it is not detrimental insulting or otherwise, it should be done, baring in mind the point i made to my doctor was simply this, regardless of what was on my medical records no one without either medical training and my authority should in fact have access to it, that should also include the police and the government, as a great believer in Human Rights and the current legislation being bandied about by the current government i find it worrying,

#1202 Harry Longman
Patient Access

Thinking people will agree with all you say Angela.

The question is, what to do? Try for a u-turn on terminology? Point to the weight of evidence for the proper meaning of SDM? Or try to present it in for patients in such a way that that they see the benefit? "Patient choice" is perhaps not best as it already has too much behind it. Need to think...

#1203 Mike Hobday
Director of Policy & Research
Macmillan Cancer Support

It's particularly disappointing that the formal impact assessment explicitly denies the suggestion that professionals will need more time for shared decision making, just more skills (when L&D is being slashed across the NHS).

#1204 Simon Young

We could just use the terms Provider choice and Treatment choice, and insist on distinguishing between them.

#1205 John Kapp

I do not read the consultation the way that you do. At present, patients' have Hobson's choice of treatment - drugs or drugs. Polls show that 3 out of 4 want drug-free complementary treatments to be provided free on the NHS, but there is no contractual mechanism to deliver this at present, and many doctors see this as quackery practiced by charlatans. I set up the Social Enterprise Complementary Therapy Company (SECTCo) to fill this gap, and we are currently bidding for community mental health with the Mindfulness Based Cognitive Therapy course, which has been NICE-recommended since 2004. Patients have the statutory right to this, but the waiting time in Sussex is 2,000 years. Please look at our website, and send me your comments.

#1206 Tony Gauvain
PTSD Resolution, Charity no. 1133188

For some reason your web page is not displaying, so I can't comment on it. But, I can agree with you and the thrust of this string. PTSD Resolution provides NICE-approved treatment to military Veterans struggling with post traumatic stress conditions of all sorts. We are immediate, local, free, brief, humane and 83% provably effective, which is precisely what the NHS, and Combat Stress are not. See

#1207 mike stone

This is muddled, legally and ethically: 'shared decision-making' hardly exists at all.

Patients have a legal right to refuse any offered treatment, and after being informed of the clinical outcomes of accepting or refusing, the patient makes that decision.

Clinicians have the right to decide whether to offer a treatment, and patients can request a treatment which has not been offered - then the decision rests with the clinician.

It isn't 'shared decision-making', but instead it is a requirement for discussions, some of which can involve a great number of people.

#1208 Gina Lowdon

Well said Angela. Decision-making is only 'shared' in as much as the medical professional has a *clinical* decision to make over what treatment or care to *offer* and the patient has the autonomous personal *decision* (not choice as it is a legal right) over whether to accept or decline.
But as we know from the field we work in, pregnant women don't usually know that. Most are under the mistaken impression that they need permission from an obstetrician to be 'allowed' to give birth to their baby - how ludicrous is that?

#1209 Kirsty-Ann
Lead Therapist

I am interested to read that others think the same about new government and DOH initiatives.
AQP - will seriously disrupt local wheelchair service provision when comes into effect. Do wheelchair users with long term conditions really want choice? and if so do they understand the possible implications of this when wheelchair services are not 'equipment only' services and are closely aligned to other essential rehabilitation services. Will providing choice in the marketplace put patients with long term conditions at risk of missing out on referral to essential services?

#1210 Jenny Pinder
dentist /patient

How very true your comments are.

I try to take as much responsibility for my care for some chronic conditions as I can. Some drs like this but others feel very uncomfortable with it.

Seeing 20 different drs in 10 years at a diabetic department, lack of continuity of care, lack of joined up care between departments,
fragmented record keeping mitigate against any lone clinician who understands the real meaning of shared care and decision making SHARED CARE for my GP means a mountain of paperwork to share the prescribing of Victoza between a hospital and PCT, purely about who pays !!!!!

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