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Shared decision making


Shared decision making true accountability in health care Richard Thomson Professor of Epidemiology and Public Health Associate Dean for Patient and Public Engagement – PowerPoint PPT presentation

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Title: Shared decision making

  • Shared decision making true accountability in
    health care

Richard Thomson Professor of Epidemiology and
Public Health Associate Dean for Patient and
Public Engagement Decision Making and
Organisation of Care Research Programme Institute
of Health and Society Newcastle upon Tyne Medical
  • What is shared decision making (SDM)?
  • Why is SDM needed?
  • Role of SDM in safety example of medicines
  • What is needed to make a difference?
  • Implementation - Key learning from the MAGIC
  • How might SDM support accountability?
  • Discussion

First video to start on click of mouse (VC
Describes seeking out more information before
deciding to have a mastectomy)
What is shared decision making (SDM) ?
(No Transcript)
UK Policy UK Government
  • Shared decision making will become the norm
  • No decision about me without me

When we want your opinion, well give it to you
Im sorry doctor, but again I have to disagree
Models of clinical decision making in the
SDM is an approach where clinicians and patients
make decisions together using the best available

(Elwyn et al. BMJ 2010)
Patient well informed (Knowledge) Knows whats
important to them (Values elicited) Decision
consistent with values
Examples of preference sensitive decisions
  • Breast conserving therapy or mastectomy for
    early breast cancer
  • Repeat c-section or trial of labour after
    previous c-section
  • Watchful waiting or surgery for benign
    prostatic hypertrophy
  • Statins or diet and exercise to reduce CVD risk
  • Diet and weight loss or medication in diabetes

Sharing Expertise
  • Clinician
  • Patient
  • Diagnosis
  • Disease aetiology
  • Prognosis
  • Treatment options
  • Outcome probabilities
  • Experience of illness
  • Social circumstances
  • Attitude to risk
  • Values
  • Preferences

Poor decision quality
The Clinical Decision Problem
Patients unaware of treatment or management
options and outcomes
Clinicians unaware of patients circumstances
and preferences
SDM is part of much wider person centred care
Spectrum of SDM to SSM
Shall I have a knee replacement?
Shall I take a statin tablet for the rest of my
I would like to lose weight
I would like to eat/smoke/drink less
Shall I have a prostate operation?
Should I use insulin or an alternative?
Involving people in their care
Systematic review of links between patient
experience and clinical safety and effectiveness
  • 55 studies
  • Consistent positive associations between patient
  • Patient safety and clinical effectiveness.
  • Self-rated and objectively measured health
  • Adherence to recommended clinical practice and
  • Preventive care (such as health-promoting
    behaviour, use of screening services and
  • Resource use (such as hospitalisation, length of
    stay and primary-care visits).
  • Some evidence of association between patient
    experience and technical quality of care and
    adverse events.

Doyle, C., et al. (2013). "A systematic review of
evidence on the links between patient experience
and clinical safety and effectiveness." BMJ Open
DOI 10.1136/bmjopen-2012-001570
Why is shared decision making needed?
(No Transcript)
Are patients involved?
2013 44
Healthcare Commission National Patient Survey
What proportion of people making decisions about
their healthcare answered more than one question
correct in a brief knowledge test?
  1. 20
  2. 40
  3. 50
  4. 70
  5. 90

What proportion of people making decisions about
their healthcare answered more than one question
correct in a brief knowledge test?
  1. 20
  2. 40
  3. 50
  4. 70
  5. 90

What proportion of people take their treatments
as prescribed?
  1. 35
  2. 50
  3. 65
  4. 80

What proportion of people take their treatments
as prescribed?
  1. 35
  2. 50
  3. 65
  4. 80

Multiple sources. DARTS Study group only 35
of people on more than one medication for
diabetes cashed in sufficient prescriptions for
full daily coverage.
Variation in knee replacement activity
Practice variation unwarranted and warranted
With thanks to Al Mulley
  • Variable access to resources and expertise
  • Insufficient research
  • Unfounded enthusiasm
  • Over-learning selective inattention
  • Faulty interpretation
  • Poor information flow
  • Poor communication
  • Role confusion
  • Clinical differences among patients
  • Variable risk attitudes
  • Variable preferences among health outcomes
  • Variable willingness to make time trade-offs
  • Variable tolerance for decision responsibility
  • Variable coping styles

SDM why should we do it?
  • Cochrane Review of Patient Decision Aids(OConnor
    et al 2014)
  • Improve knowledge
  • More accurate risk perceptions
  • Feeling better informed and clear about values
  • More active involvement
  • Fewer undecided after PDA
  • More patients achieving decisions that were
    informed and consistent with their values
  • Reduced rates of major elective invasive surgery
    in favour of conservative options PSA screening
    menopausal hormones
  • Improves adherence to medication (Joosten, 2008
    and more)
  • Better outcomes in supported self-management
    (SSM)/long term care
  • No decisions in the face of avoidable ignorance
  • Reduce unwarranted variation

SDM as a legal requirement
Second video to start on click of mouse (VC
Explains why she decided to have a mastectomy
rather than a lumpectomy)
Role of SDM in safety example of medicines
  • Systematic review quality of medication use in
    primary care (2009)
  • 2.9 to 5.2 not cashed (from UK data from
  • Antidepressants in primary care (Netherlands,
  • Of 965, 41 (4.2) didnt fill prescription and
    229 (23.7) filled only a single prescription.

Garfield, Barber et al. Quality of medication use
in primary care. BMC Medicine 2009750 Geffen,
Gardarsdottir et al. Initiation of
anti-depressant therapy. BJGP 20095981-88
  • RCT of poorly controlled asthma (612 adults)
  • Cf clinician decision making vs SDM
  • better controller and long acting beta-antagonist
  • better clinical outcomes
  • QoL, health care use, rescue medication use,
    asthma control, lung function.
  • Shared understanding increases adherence in
    schizophrenia (OR 5.82)

Wilson, Strub at al. Shared treatment decision
making improves adherence and outcomes in poorly
controlled asthma. Am J Respir Crit Care Med
2010181566-77 McCabe, Healey et al. Shared
understanding in psychiatrist-patient
communication association with treatment
adherence in schizophrenia. PEC 20139373-9
  • 75 systematic reviews
  • Generally effective
  • Medicines self management and self monitoring
  • Promising
  • Simplified dosing regimes
  • Pharmacists in medicines management (e.g.
    medicines reviews and care plans)
  • Some positive effects (esp adherence)
  • Education delivered with self management skills
    training information and counselling together
    education/information as part of pharmacist
    delivered package

How might SDM improve safety?
  • Increased knowledge and awareness
  • Empowerment/voice
  • Supported choice
  • Concordance
  • Better control
  • Recognition of side effects
  • Early intervention on deterioration/symptom
  • Intervention on error
  • Better uptake of evidence-based interventions
  • Less unnecessary/unwarranted intervention

So why arent we doing it?
  • Multiple barriers
  • - Were doing it already
  • - Its too difficult (time
  • - Lack of applicability
  • - Accessible knowledge
  • - Skills Experience
  • - Decision support for patients /
  • - Fit into clinical systems and pathways
  • Lack of implementation strategy

Légaré F, Ratté S, Gravel K, Graham ID. Barriers
and facilitators to implementing shared
decision-making in clinical practice Update of a
systematic review of health professionals
perceptions. Patient Education and Counseling.
What is needed to make a difference? Implementatio
Cardiff Glyn Elwyn/Maureen Fallon
Newcastle Richard Thomson
Acknowledgements The Health Foundation, Cardiff
and Vale Health Board, Newcastle upon Tyne
Hospitals NHS Foundation Trust, staff and
patients involved across both sites.
Key learning from the MAGIC programme headlines.
Evidence-based decision support
  • Timely and appropriate access for clinicians and
  • Value of brief in-consultation tools (Option
    Grids and Brief Decision Aids)
  • Fit to clinical pathways(
  • Adapt pathway or tools? (VBAC, BPH)

Treatment option Benefits Risks or Consequences
Watchful waiting - no active treatment No side effects or hospital treatment can choose another option at any time. Your periods will eventually disappear average age of menopause is 51. It is already having an impact on your life and wellbeing. It is possible that periods will get worse running up to the menopause
Treatment option Benefits Risks or Consequences
Intrauterine system (IUS) Involves a minor procedure done in the GP practice/sexual health clinic. Majority of women say that the fitting is similar to moderate period discomfort Blood loss is normally reduced by about 90 About 25 in every 100 women will have no periods at 1 year It lasts five years but can be removed at any stage. It is more often considered if the treatment is wanted for longer than a year. It usually reduces period pain. It is an effective contraceptive.(see separate leaflet) Bleeding can become more unpredictable especially in the first 3-6 months. This usually, but not always, settles down At the time of fitting, an IUS may rarely be placed through the wall of the uterus (about 1 in 1000 fittings). IUS falls out 5 times in every 100 times it is put in. (this is usually obvious at the time)
Option Grid
Lumpectomy with Radiotherapy Mastectomy
Which surgery is best for long term survival? There is no difference between surgery options. There is no difference between surgery options.
What are the chances of cancer coming back? Breast cancer will come back in the breast in about 10 in 100 women in the 10 years after a lumpectomy. Breast cancer will come back in the area of the scar in about 5 in 100 women in the 10 years after a mastectomy.
What is removed? The cancer lump is removed with a margin of tissue. The whole breast is removed.
Will I need more than one operation Possibly, if cancer cells remain in the breast after the lumpectomy. This can occur in up to 5 in 100 women.  No, unless you choose breast reconstruction.
How long will it take to recover? Most women are home 24 hours after surgery Most women spend a few nights in hospital.
Will I need radiotherapy? Yes, for up to 6 weeks after surgery. Unlikely, radiotherapy is not routine after mastectomy.
Will I need to have my lymph glands removed? Some or all of the lymph glands in the armpit are usually removed. Some or all of the lymph glands in the armpit are usually removed.
Will I need chemotherapy? Yes, you may be offered chemotherapy as well, usually given after surgery and before radiotherapy. Yes, you may be offered chemotherapy as well, usually given after surgery and before radiotherapy.
Will I lose my hair? Hair loss is common after chemotherapy. Hair loss is common after chemotherapy.
Third video to start on click of mouse (VC A
Language All Of Their Own)
Clinical skills development
  • Cornerstone of implementation and a real success
    of the MAGIC programme
  • Skills trump tools, but attitudes trump all
  • Interactive, advanced skills-based training is
  • Eye opening and valued moving from we do this
    already to I think we do this, but we could do
    it better
  • What is important to patient (values) is key

Elwyn G, Frosch D, Thomson R, et al (2012) Shared
Decision Making A Model for Clinical Practice .
J Gen Int Med. 10.1007/s11606-012-2077-6
Patient activation
A6 flyer for use in appointment letters, waiting
areas, consulting rooms. Posters for use in
waiting areas and consulting rooms. Short film
to encourage patient involvement So Just Ask
Acknowledgement to Shepherd et al, School of
Public Health, University of Sydney
Clinical team engagement
  • Leadership and champions
  • Team of champions (including non-clinical)
  • Learning sets (in primary care)
  • Importance of medical leadership role of nurse
  • Different facilitators for different teams
  • Keeping SDM on the agenda of the team
  • Patient experience decision quality
  • Support new developments (place of birth)
  • Support for model of delivery (MDT in head and
    neck cancer)
  • Practice payments
  • Peer pressure/CCG and national initiatives (1000

Measurement rapid feedback
  • Measurement for monitoring, research or QI?
  • Patient experience data a challenge
  • Validity, reliability, social acceptability bias
  • Role of measures that inform practice

South Tyneside CCG
  • SDM key component of Referral Improvement
  • Scheme (RIS) in 2012/13
  • Pressures around elective activity particularly
    OP in General Surgery, Orthopaedics and
  • Trained staff across all 28 practices
  • Better management of patients with these
    conditions more confident GPs with more
    satisfied patients (questionnaire)
  • Financial savings of around 500k in 1st OP
  • Engagement with secondary care to adopt similar
    practice early stage involvement in top tips /
    BDA development etc.

Key learning Summary
  • SDM is so much more than tools more to do with
    skills and new ways of consulting (aided by
    decision support) different conversations
  • Complex PDAs have a role, but also need simpler
    in-consultation support (Option Grids/Brief
    Decision Aids).
  • Need to embed within clinical pathways (or adapt)
    and show value to clinicians
  • Important emerging role of patient activation
    (provided service is ready to respond)
  • Measurement of patient experience hard at local
    level, but local measures likely to be of value
    if they stimulate change and inform clinical
    practice (e.g. DQM)

Wider policy and systems issues
  • SDM is a part of the wider drive for
    person-centred care
  • SDM needs to be incentivised within the system
    (e.g. key metrics/performance management
    national/ professional body support commissioner
    and board buy in)
  • Tensions exist
  • Rapid progress through cancer care pathways QOF
    tendering processes within the English market
    criterion based models of referral management and
    NICE guidance
  • Need for national coordination around education
    and training
  • Coordination nationally between patient
    experience/SDM and LTC/SSM
  • Access to resources at the time needed e.g.
    within info systems
  • Use of routine data for monitoring and QI
  • Research needed (e.g. NIHR) to develop valid and
    reliable measurement of SDM

  • How might SDM support accountability?

Public/ patient accountability
  • Population level
  • Elections/govt
  • Health ad Wellbeing Boards
  • Governing bodies/Foundation Trusts
  • Commissioner
  • CQIN/P4P/contracts and monitoring
  • Agency
  • GP referral/advice
  • Individual level
  • Provider choice (GP/hospital)
  • SDM and person-centred care
  • Data/information eg HSMR/Dr Foster/quality and
    safety indicators/QOF/Quality reports

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You have the right to be involved in discussions
and decisions about your healthcare, and to be
given information to enable you to do this. Your
doctor should listen to you and respond to your
concerns and preferences about your healthcare.
That way, you can find out what's the best
treatment for you. NHS staff will give you the
information that you need to support these
discussions and decisions. You can read more
about this right in  http//
Choice of treatment/care (SDM) Provider choice
Comparative information on implications, risks and benefits of treatment and care options at patient level. Information increasingly available and directly relevant to the decision can be embedded in direct patient care. Comparative information on quality of care at system level. Data often limited, incomplete, poorly understood by patients/public, what is available may often be irrelevant to an individual patients decision.
Patients use data to make decisions of direct relevance to their care and health Evidence suggests that patients and the public rarely use comparative quality data on providers (although providers do)
Limited incentives for provider game playing Strong incentives for provider game playing
Information appropriate to the clinical consultation Information rarely directly relevant to the clinical consultation
Rapidly growing evidence base that such information has benefits for patients and the service Limited evidence base that such information has benefits for patients
Choices not driven by price/cost Choices driven by quality and/or cost/price
Does not require competition or a market in health care Requires competition (alternative providers) and probably a market.
Politically (largely) not contentious Politically (highly?) contentious
Relevant to professional accountability and professional incentives (doing the best for the patient).

True accountability for health care direct accountability to patient at point of care and decision making, and system accountability through supporting patient engagement in effective decision making of direct relevance. System accountability through imperfect market mechanisms and imperfect information (e.g. even insufficient for agency role of GP in advising on choice of secondary care)
UK NHS Survey and feedback
Dartmouth Hitchcock Medical Center Breast Cancer
How might SDM support accountability?
  • The consultation is where health care is
  • Increased knowledge, awareness, understanding
  • Empowerment/voice/patient values
  • Supporting pertinent choices for an individual
  • Embeds evidence-based data into practice
  • Clinically and patient-focused
  • Enhances patient experience/outcomes
  • Cost-effective?
  • Appropriate use of resources preference
  • Enhances patient safety
  • Concordance
  • Recognition of adverse effects
  • Control of symptoms

  • MAGIC programme (SDM Implementation Programme
    funded by the Health Foundation)
  • Health Foundation patient-centred care resource
    centre http//
  • Decision aids (links to several different
    sources) http//
  • Brilliant evidence-based medicine and SDM YouTube
    clips from Dr James McCormack http//

Thank you questions? richard.thomson_at_newcastle.a