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
Applications of shared decision making:-
Selection of tests or treatments
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
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.
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
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.
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
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
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.
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
Ann Int Med 2012
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
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.
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
Train doctors in risk literacy
Post and undergraduate
Use natural frequencies and absolute risks everywhere.