Learning the lessons from Learning the lessons from shared decision making in shared decision making in

practicepracticeRichard Thomson

Professor of Epidemiology and Public HealthAssociate Dean for Patient and Public Engagement

Institute of Health and SocietyNewcastle upon Tyne Medical School

Statements (1)Decide the extent to which you agree with the following statements where 1 = completely disagree and10 = completely agree

Healthcare professionals are responsible for supporting patients to make

decisions that the patient feels are best for them, even if the professional

disagrees

Statements (2)Decide the extent to which you agree with the following statements where 1 = completely disagree and10 = completely agree

Doctors shouldn’t offer their opinion on which treatment might be best for a

patient.

Statements (3)Decide the extent to which you agree with the following statements where 1 = completely disagree and10 = completely agree

The person with a long term condition is more likely to act upon the decisions

they make themselves, rather than those made for them by a professional

What percentage of patients say they were involved as much as they wanted to be in

decisions about their health care?

1. 10%

2. 30%

3. 50%

4. 75%

5. 85%

Patients who would like more involvement in decisions about their care (source: NHS Inpatient Surveys 2002 - 2011)

45 46 47 47 48 49 48 48 48 48

0

10

20

30

40

50

60

70

80

90

100

2002 2003 2004 2005 2006 2007 2008 2009 2010 2011

Year

Per

cen

tag

e

What proportion of their patients do doctors believe want more information on their

treatment?

1. Only a minority

2. About half

3. The majority

What proportion of people with diabetes report almost always discussing their goals

in caring for their diabetes ?

a) 40%

b) 50%

c) 60%

d) 70%

Healthcare Commission National Patient Survey

What proportion of people with severe arthritis (appropriate for surgery), said that definitely wouldn’t want joint replacement?

a) 20%

b) 30%

c) 40%

d) 50%

What proportion of people with severe arthritis (appropriate for surgery), said that definitely wouldn’t want joint replacement?

a) 20%

b) 30%

c) 40%

d) 50%

Hawker et al. (2001): Working with people's prior perceptions, and informed by a standardised script read by a researcher, half

of patients with painful disabling hip or knee symptoms were unwilling to consider joint replacement

What proportion of people take their treatments as prescribed?

a) 35%

b) 50%

c) 65%

d) 80%

What proportion of people take their treatments as prescribed?

a) 35%

b) 50%

c) 65%

d) 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.

What is shared decision making What is shared decision making (SDM) ?(SDM) ?

UK Policy: UK Government

16

Shared decision making will become the norm:

“No decision about me without me”

Models of clinical decision making in the consultation

Paternalistic Informed ChoiceShared Decision Making

Patient well informed (Knowledge)

Knows what’s important to them (Values elicited)

Decision consistent with values

SDM is an approach where clinicians and patients make decisions together using the best available evidence. (Elwyn et al. BMJ 2010)

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

“Shall I have a knee

replacement?”

“Shall I have a prostate

operation?”

“Shall I take a statin tablet for the

rest of my life?”

“Should I use insulin or an alternative?”

“I would like to lose weight”

“I would like to eat/smoke/drink

less”

Spectrum of SDM to SSM

TO

OL

S

SK

ILL

S

Involving people in their care

Hours with HCP

= 4 hours in a year

Self-management

= 8756 hours in a year

Cochrane Review of Patient Decision Aids(O’Connor 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)

Better outcomes in SSM/long term care

SDM – evidence

So why aren’t we doing it?• Multiple barriers

- “We’re doing it already”

- “It’s too difficult” (time constraints)

- Accessible knowledge

- Skills & Experience

- Decision support for patients / professionals

- Fit into clinical systems and pathways

Lack of implementation strategy

NewcastleRichard Thomson

CardiffGlyn Elwyn/Maureen Fallon

Acknowledgements: The Health Foundation, Cardiff and Vale Health Board, Newcastle upon Tyne Hospitals NHS Foundation Trust, staff and patients involved across both sites.

Key features of the MAGIC Key features of the MAGIC programmeprogramme

Key elements: Phase 1• effective engagement of multidisciplinary clinical teams through

clinical champions, skills development, trained facilitators, and embedding change into clinical pathways and practice

• Awareness, attitude,, skills development• drawing upon what we know works in change management and

professional behaviour change, whilst testing some additional innovative elements

• used decision aid tools both decision-specific and generic tools• rapid action learning and feedback (implementation monitoring) • patient and public engagement

MAGIC – Phase II Moving implementation from pilot departments and general practices to

hospitals and health communities: embedding and sustainability

Leadership and organisational engagement, including working with new commissioning structures (Newcastle) and Welsh Govt (Cardiff)

Expanding and accelerating clinical engagement and impact, by testing learning from Phase 1

Enhanced patient and public involvement, including an emphasis on patient activation and the wider community.

More efficient ways of delivering education and training

Quality metrics: demonstrating value to commissioners and primary and secondary care organisations.

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Key learning from the MAGIC Key learning from the MAGIC programme: headlines.programme: headlines.

Evidence-based decision support• Timely and appropriate access for clinicians and patients

• Needs facilitation

• In consultation or outside?

• Value of brief in-consultation tools (Option Grids and Brief Decision Aids)

• Fit to clinical pathways

• Adapt pathway or tools? (VBAC, BPH)

Brief Decision Aids/Option Grids

Heavy Menstrual Bleeding (Heavy Periods) Management Options[1]

A Brief Decision Aid

There are four options for the management of heavy menstrual bleeding:Watchful waiting - seeing how things go with no active treatment.Intrauterine system (IUS) – a hormonal device placed in the womb that lasts five years.Medication - tablets taken before and during periods, the combined oral contraceptive pill, or progestogens either as tablets or a 3 monthly injection.Surgery - endometrial ablation or hysterectomy. These are hospital procedures that are usually considered only if other options have not worked well or have been unacceptable.

[1] Only for use once other causes of HMB such as fibroids or polyps have been excluded

Benefits and Risks of Intrauterine System (IUS)

Treatment optionBenefits 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 yearIt 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 downAt 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)

Treatment optionBenefits 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

Menorrhagia BDA

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.

Option Grid

Patients’ knowledge post diagnostic consultation

Measuring impact of change in clinical practice (Option Grid)

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 core

• 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 learning

• Challenge of getting senior clinicians to attend

• Role of the model of the consultation

• Needs resourcing - MAGIC-Lite model: possible to deliver more efficiently

SDM model for clinical practice

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Example phrases you might like to use OPTION TALK 

“Are you already aware of how this problem could be managed or treated?”

“Do you know anything about the options - have you been searching for information on this yourself?”  

“It is possible to do three things in this situation, let me list them quickly before I describe them in more detail” 

“Here is a diagram; Decision Grid etc that will help me describe the options to you. I am going to describe the possible risks as well as the possible benefits of each – so let’s start with…”   “There is a large amount of information to grasp here. Would you like me to provide you with some information that you could read and discuss with your family? We could meet again when you have had a chance to digest it?”

“There are x things to do in this situation, let me list them quickly before we go into them in detail”.

What to say if options are:

Similar: “Both options are very similar and involve taking medication on a regular basis” Different: “These two options are different and will have different impact on you and your family, let me explain what they involve”. 

“Let’s look at the most relevant risks and benefits of each option … let me know if I go too quickly or if you do not understand…”  

“Let me just check that I have explained this well enough - can you tell me what you have picked up from what I’ve told you?” 

Clinical team engagement• Leadership and champions

• Team of champions (including non-clinical)

• Learning sets (in primary care)

• Importance of medical leadership & role of nurse specialists

• 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 lives)

Measurement & rapid feedback• Action learning model

• Regular meetings to share good practice and experiences

• Measurement for monitoring, research or QI?

• History and experience

• Local skills

• Driver diagrams and PDSA in Cardiff

• Role of rapid testing locally and ownership

• Patient experience data a challenge

• Validity, reliability, social acceptability bias

• Role of decision quality measures

Readiness to decide, using DelibeRATE (Feb 2011 – Jan 2012)

Measuring patients’ readiness to decide

Choice of treatment (Feb 2011 – Jan 2012)

Measuring patients’ choice of treatment

Quality Improvement & MAGIC

•Cardiff used the model for improvement (known as QI) as the basis for implementing SDM. This methodology is adopted on a pan-Wales basis.

•The PDSA (Plan, Do, Study, Act) cycle is ideally suited to SDM implementation as it allows you to test a change in the work setting by planning it, trying it, observing the results and acting on what is learned e.g DQM changes in Breast; Surescore use in Mental Health

Patient and public involvement• Role of patient narratives/stories

• Role to challenge

• “Patient activation”: PPI role

• Patient materials design and content

• Ask 3 questions –well received and adaptable

• How to better support activated patients?

• Challenge of PPI in clinical teams

• Wider bi-directional PPI – range of stakeholders – External Advisory Group (Newcastle)

Ask 3 QuestionsA6 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

Commissioning

• Challenging in rapidly changing systems and new organisations alongside efficiency savings!!

• MAGIC Lite: possible to deliver training to large numbers quickly

• Link to other priorities – e.g. referral management, long term conditions

South Tyneside CCG - What did we do and why?

• Shared Decision Making key component of our Referral Improvement Scheme (RIS) for 2012/13 – Demand Management project working with our GP practices to improve the quality of their referrals

• System pressures around elective activity particularly OP appointments in 3 specialities - General Surgery, Orthopaedics and Gynaecology – and focussed on 6 specific conditions within these

• Used SDM as a tool with the clinical teams to drive up the quality of GP referrals

• SDM is best practice and as a CCG we wanted to build it into our clinical culture and practice in South Tyneside

With thanks to Kim Teasdale

Referral Improvement Scheme (RIS)

How did we implement Shared Decision Making?

Outcomes

• Better management of patients with these conditions – more confident GPs with more satisfied patients (questionnaire)

• Financial savings of around £500k in 1st OP attendances for those three specialities

• 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)

• 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

• Need for wider PPI at all levels

Key learning: Summary

• 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)

• Link to QI/service improvement – local context

Wider policy and systems issues• SDM needs to be incentivised within the system

(e.g. key metrics/performance management; national/ professional body support; commissioner buy in; board buy in)

• Tensions exist– Rapid progress through cancer care pathways– QOF ( e.g. for hypertension treatment targets)– Tendering processes within the English market– Criterion based models of referral management and

NICE guidance may create tensions with SDM

Wider policy and systems issues

• 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

THANK YOU

richard.thomson@newcastle.ac.uk