The core clinical presentation slideset for the Right care Shared Decision Making Programme

1. The Case for Shared Decision Making
www.rightcare.nhs.uk

2. What is shared decision making?
• Shared decision-making is a process in
which patients are:
– involved as active partners with their
clinician
– in clarifying acceptable medical options
– and choosing a preferred course of
clinical care.

3. When is shared decision-making
appropriate?
• When people face major medical decisions
where there is more than one feasible option
• When people with long-term conditions want
to plan their care, adopt healthier lifestyles,
and enhance their ability to self-manage

5. Why should we do this?

6. It’s what our patients/
customers want
%
Wanted more involvement in treatment decisions:
Source: NHS inpatient
surveys

7. HCC National Patient Survey
We don’t do it very well.
(the patient is the greatest untapped resource)

8. some quotes from our Service User
Reference Group
“recognise the “patient” as an expert in themselves”
“listen to us”
“don’t only concentrate on the clinical”
“be aware that management of the LTC is only a small part
of my life”
“I want to be seen as a whole person”
(ortho example)
“stop using language and knowledge as a barrier”
“speak to me with respect”

9. J Allison Glover,
1938
•10-fold variation in tonsillectomy
•8-fold risk of death with surgical
treatment
•The response:
– “…these strange bare facts of
incidence…”
– “… tendency for the operation
to be performed for no particular
reason and no particular result.”
– “…sad to reflect that many of
the anesthetic deaths… were due
to unnecessary operations.”
Slide courtesy of Dr Al Mulley, Foundation for Informed Medical Decision Making and the Dartmouth Center for Health Care Delivery Science
Practice variation: Glover’ s discovery and the
ethical imperative

10. John E. Wennberg, 1973
Practice variation:
its re-discovery by Wennberg
• 17-fold variation in tonsillectomy
• 6-fold variation in hysterectomy
• 4-fold variation in prostatectomy
• “The need for assessing outcome
of common medical practices”
• “Professional uncertainty and the
problem of supplier-induced
demand”
Slide courtesy of Dr Al Mulley, Foundation for Informed Medical Decision Making and the Dartmouth Center for Health Care Delivery Science

11. Practice variation: surgery in the U.S., Norway
and the U.K.
Wennberg
McPherson
Hovind
N Engl J Med 1982; 307: 1310
• Geographic variation in rates of surgical
procedures
• Different rates between countries (US >
UK > Norway, or US > Norway > UK)
• Regional variation within countries similar
– Higher variation: tonsillectomy,
hemorroidectomy, hysterectomy,
prostatectomy
–Lower variation: appendectomy, hernia
repair, cholecystectomy
• Variation a characteristic of the procedure
• Within country variation not associated
with organization or financing of care, but
with professional uncertainty
Slide courtesy of Dr Al Mulley, Foundation for Informed Medical Decision Making and the Dartmouth Center for
Health Care Delivery Science

12. Variation in UK

13. Primary Knee Replacement - AgeSexNeeds standardised cost per 1000 population for PCTs
0
2,000
4,000
6,000
8,000
10,000
12,000
14,000
1 11 21 31 41 51 61 71 81 91 101 111 121 131 141 151
PCT
AgeSexNeedsstandardisedcost(£
per1000population)
Musculoskeletal programme- variation in
knee replacement activity

14. 14
Top 30 PCTs
(Lowest Rates)
Next 31 PCTs
Next 30 PCTs
Next 31 PCTs
Bottom 30 PCTs
(Highest Rates)
Top 30 PCTs
(Lowest Rates)
Next 31 PCTs
Next 30 PCTs
Next 31 PCTs
Bottom 30 PCTs
(Highest Rates)
Top 30 PCTs
(Lowest Rates)
Next 31 PCTs
Next 30 PCTs
Next 31 PCTs
Bottom 30 PCTs
(Highest Rates)
London
Variation in knee replacement activity

15. ANALYSIS: SATISFACTION
(not just a nice thing to do)
• Satisfaction questions were completed by
8095 patients
• Overall
- 81.8% were satisfied
- 11.2% were unsure
- 7.0% were not satisfied
• The OKS varied according to patient
satisfaction (p<0.001)

16. Dialysis or not? A comparative survival study of patients
over 75 years with chronic kidney disease stage 5
Whole Group
Murtagh et al. NDT 2007
High-Comorbidity
(wrong patient error)

19. The vision
‘The Government’s ambition is to achieve healthcare
outcomes that are among the best in the world.’
‘This can only be achieved by involving patients in their
own care, with decisions made in partnership with
clinicians, rather than by clinicians alone.’
‘We want the principle of ‘shared decision-making’ to
become the norm: no decision about me without me.’
Equity and excellence :Liberating the NHS
July 2010

20. The policy context
‘PCTs should develop and implement plans for
shared decision making and information giving
and should include these areas in contracts.‘
NHS Operating Framework 2011/12, Dec 2010

21. What are they sharing?
Clinicians
• Diagnosis
• Cause of disease
• Prognosis
• Treatment options
• Outcome
probabilities
Patients
• Experience of illness
• Social
circumstances
• Attitude to risk
• Values
• Preferences

22. Patient decision aids
• Are self administered tools that prepare
patients for making informed decisions
about medical test or treatments
• They are designed to increase a
patient’s awareness of expected
outcomes and their own personal
values

23. NHS Direct Patient Decision
Aids

28. Results of Pilot Phase 1
• Patients are very willing to go to the web tools
• Patients who used the PDAs were very satisfied with the
content and goal and felt better prepared to become
involved in decisions.
• Patients are willing and ready to use these tools
• The NHS will need to be ready for these 'activated'
patients and willing to involve them in shared decision
making.

29. Patient Comments:
"All the necessary information was there in simple illustrative
manner"
“Easy to follow and explained in simply in plain English“
“I have an understanding of what I want to get across to the
consultant”
"Own time, own space, own pace"

30. Decision support
• Clarifies the problem and goals
• Identifies potential solutions
• Provides and discusses information
• Checks comprehension and preferences
• Agrees actions
• Motivates and encourages
• Implements and supports
• Monitors outcomes
30

31. Decision Aids reduce rates of
discretionary surgery
RR=0.76 (0.6, 0.9)
O’Connor et al., Cochrane Library, 2009

32. Decision aid and coaching in
gynaecology
2751
2026
1566
0
500
1000
1500
2000
2500
3000
Usual care Decision aid Decision aid +
coaching
Treatment costs ($) over 2 years

33. THE DOCTOR’S DILEMMA:
PREFACE ON DOCTORS
BERNARD SHAW
1909
“… That any sane nation, having observed that
you could provide for the supply of bread by
giving bakers a pecuniary interest in baking
for you, should go on to give a surgeon a
pecuniary interest in cutting off your leg, is
enough to make one despair of political
humanity.”

34. 34
A New Paradigm for Demand Management?
Supporting individuals so that they may make
rational health and medical decisions based on a
consideration of benefits and risks (for them!)
………
…and their values and preferences

35. What do our customers/ patients/ want?
• Be able to ask for the Right Care
(guidelines)
• Get support for self care
Be able to say no to care which is not in
your interest

36. National Shared Decision Making Programme
Embedding
SDM in NHS
Systems
(commissioning
& provision)
SHARED
DECISION
MAKING IN
ROUTINE
NHS CARE
Creating a
receptive
culture for
SDM (clinical,
patient &
public)
Commissioning
Patient Decision
Aids & Decision
Support

37. 37
Patient Decision Aids – Roll Out Plans
Phase1
• Arthritis of the Knee (total knee replacement & knee arthroscopy)
• Benign Prostatic Hyperplasia (TURP)
• Localised Prostate Cancer (Prostate Surgery and Radiotherapy)
Phase 2
• Concern about Prostate Cancer (PSA testing, Prostate Biopsy, Prostate Surgery,
Radiotherapy etc)
• Breast Cancer (Breast Surgery, Radiotherapy, Chemotherapy)
• Pregnancy with a high risk of Down Syndrome (Amniocentesis, Termination of Pregnancy)
Phase 3
• Arthritis of the Hip (Hip Replacement)
• Abdominal Aortic Aneurysm (Offered Screening or Diagnosis of AAA Abdominal Aortic
Aneurysm Ultrasound Screening and Surgical Repair)
• Cataract (Cataract surgery)
• End Stage kidney Failure (Dialysis – all modalities)
PDAs ALREADY COMMISSIONED WITH NHS DIRECT

38. 38
• Menorrhagia/ Menstrual disorders (Hysterectomy)
• Prolapsed Disc and other causes of chronic back pain (Back Surgery)
• Carpal Tunnel Syndrome (Carpal tunnel decompression)
• Inguinal and Umbilical hernia (Surgical Hernia repair)
• Diabetes
• COPD
• End of Life
• Cholecystitis (Cholecystectomy)
• Atrial Fibrillation
• Heart Failure
• Multiple Sclerosis
• Stable Angina (Angioplasty (PTCA) and CABG)
• Pregnancy after initial Caesarean Section (Elective Caesarean Section)
• Obesity (Bariatric Surgery)
• Recurrent Tonsillitis (Tonsillectomy)
• Glue Ear/ Serous OtitisMedia (Grommets)
Patient Decision Aids to be Commissioned - Phase 4 Plans

39. Key messages
• Patients want to be more involved in their
healthcare
• Doctors and nurses need to work better
together to share the decision-making
process
• Decision aids and decision support help
patients make healthcare decisions which
are right for them and right for society

40. Thank you
Give people the care they need and no less,
the care they want and no more – Al Mulley
www.rightcare.nhs.uk