Can anyone suggest resources to help authors incorporate values/shared decision-making in guidelines? Or examples of it done well? #sdm

Can anyone suggest resources to help authors incorporate values/shared decision-making in guidelines? Or examples of it done well? #sdm
Was the q I was asked on Twitter
I don’t know the answer, but I can’t summarise my view into 140 chars.
So I wrote a bit more
Sorry this is not perfect prose


Opening thoughts

Applications of shared decision making:-

Selection of tests or treatments

Managing LTC

Wellness and h promotion

End of Life


NHS inpatient surveys consistently tell us that when asked ‘were you as involved as you wanted to be about decisions on your care and treatment’ the response is static at c54% since 2002



Ingredients of good decision aid.





Recognise that the Clinician is expert in some things

Patient is expert in others



QA of the decision aid is critical

Also is ensuring that the deliberation is an important part of the decision making processes.


Incorporating values into guidelines – the first part of the q
It’s maybe best defined as a methodology question.

There will be loads and loads written on this – do the lit search. But I don’t think there’s definitive advice on it. 

I’d ask Angela Coulter first tho – she has a commanding knowledge of the subject.


NHSE paper is worth reading

Esp para 11&13


May be some advice in NICE CG methods manual
Chris Gibbons may be able to advise. He’s on Twitter.

May be something in SIGN methods

I’d have a dig around the AHRQ website

They always produce excellent stuff.

I don’t know whether they have done this question


Examples of well done decision aids – second part 

Right care

Some decent and accredited decision aids on there some good ones on NHS Choices.


Also often use Mayo Clinic



NICE are getting better at this – see recent AF anticoagulant effort following the 2014 Guideline.



See here



Some key references

Stacey et al

Cochrane review 2014


Good 2 side summary of the Stacey et al 2014 Cochrane review on this matter




Arterburn H Aff 2012

Use of shared decision in O&T

Big cost reductions and volume

20-30-% reduction in volume


Coxeter et al

Antibiotics. Cochrane 2015



Personalised care planning

Cochrane 2015





Lastly – maybe most important – The importance of good risk communication
Key in all this is good risk understanding and communication 

Gerd Gigerenzer is about the best on the planet at this
The following are my own notes I took from hearing at a conference (Hellish decisions in healthcare) in Oxford. I was spellbound.

Risk education

Patients – use of NHS choices and other platforms

What can we do on risk pre and post consultation to enable them to have better understanding of risks and benefits

Increasing the risk communication literacy of clinicians

Most patients and doctors don’t understand evidence and risk

Thus SDM is impossible under these conditions


Poor risk comm does harm and causes cost

Pill scare – classic absolute / relative issue

Abortions, harm, cost


Downstream consequences…..

If you care about thrombosis…and don’t take pill on account of this risk….then the condition of pregnancy carries a higher risk of thrombosis than taking the pill


Most doctors, patients, policy makers don’t understand health statistics


1000 women who do participate in breast cancer screening, 1000 women who don’t- what’s the difference in number of deaths out to 10yrs

Same for men / prostate cancer


In which country are those sampled better able to give a realistic estimate of true benefit

Gigerenzer Mata Frank

JNCI 2009

J Natl Cancer Inst. 2009 Sep 2;101(17):1216-20. doi: 10.1093/jnci/djp237. Epub 2009 Aug 11.

Public knowledge of benefits of breast and prostate cancer screening in Europe.


UK pop over estimate the benefit, by orders of magnitude

Fact box estimations of all risks and all benefits in numbers and absolute terms

Not intended to tell people what to do, but to inform them about all risks and all benefits


How breast cancer pamphlets mislead women

Giving people estimated of benefit in relative terms


Can be (unethically) used to manipulate choices people make


Prostate cancer survival

The Gulliani story

82% of survival at 5y vs 44% in socialised medicine

5y survival rates are not correlated with mortality rates

5y survival in the context of screening is misleading – lead time and length bias.

Overdiagnosis bias


What proportion of German and USA docs understand the distinction between 5y survival and mortality rates in terms of whether they recommend screening to patients

Poor understanding of risk



Medical Decision Making 2011

German docs




Ann Int Med 2012

USA docs





People being given pink ribbons as opposed to clean information

This is unethical

“If you haven’t had a mammogram, you need more than your breasts examined”


Many breast screening examples in the USA are number free

When numbers are given it’s relative risk and 5y survival




The art of confusing risk information

Probabilities of singular event

Without a reference class


Report rel risks without baseline risk

RRR looks impressive, RRI makes harm look frightening


Mismatched framing

Report benefit in relative terms and harms in absolute numbers


Report 5y survival instead of mortality for screening



Proposals and answers

Hold authors to account

Incorporate a section in Cochrane reviews on the use of misleading statistics.

Dare to be simple – include a simple fact box in every systematic review and health pamphlet for patients.



PSA screening

Djulbegovic BMJ 2010

Picture version of a fact box. Smiley faces etc



AOK health insurance

Ovarian ca screening with US and ca125

Harm done borders on crime (for the €35 inducement to docs to do the test)




Health information policy

Misleading info removed from public info

Fact boxes


Train doctors in risk literacy

Post and undergraduate


Use natural frequencies and absolute risks everywhere.




 Good luck













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