The Case for Shared Decision Making QIPP | Right Care

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.

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

Why should we do this?

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

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

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”

J Allison Glover, 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

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

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

Variation in UK

Musculoskeletal programme- variation in knee replacement activity

14 London Variation in knee replacement activity

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)

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)

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

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

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

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

NHS Direct Patient Decision Aids

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.

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"

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

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

Decision aid and coaching in gynaecology

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 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

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

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 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 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

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

Thank you Give people the care they need and no less, the care they want and no more Questions/comments