Personal Value and its Place in Priority Setting

Angela Coulter, PhD

Informed Medical Decisions Foundation

and

University of Oxford

@acpatient

Triple Value Healthcare

• Technical value

– Practice is evidence-based, efficient and effective

• Allocative value

– Resources are distributed equitably to maximise value for the whole population

• Personal value

– Individuals’ goals and preferences shape the care they receive

British Newspaper headlines 26/08/16

What to do? Service Transformation Plans (as reported by Nuffield Trust)

• Close hospital beds

• Shift care into the community

• Merge A&E departments

• Rethink staffing models

• Close community hospitals

• Get a grip on specialist services

• Reconfigure primary care

• Target high need, high cost patients

• Strengthen prevention

• STPs – 5-year plans for integrated care in 44 regions in England

• Tight timescales mean little patient/public engagement in STPs as yet

How Will the Public Respond?

More is Not Always Better

Primary Hip Replacements Case-mix adjusted CCG rates

Health Gain after Hip Replacement (EQ5D) Age-sex standardised CCG rates

NHS Atlas of Variations 2015

Benefits are often Marginal at Best

Gerd Gigerenzer BMJ 2016;352:bmj.h6967 ©2016 by British Medical Journal Publishing Group

Benefits may be Small and Risks High

Trade-Offs can be Complex and Outcomes Uncertain

0

5

10

15

20

Improvement in symptoms

Commercial Pressures

We Must Change the Terms of the Debate

• Focus on personal value

• More is not always better

• Harms caused by medical intervention = patient safety issue

• Unnecessary care = unnecessary risk + cost

• Efficiency = better for everyone

Start with Individual Care

• One in three patients feel uninformed about their treatment

• About half want more involvement in decisions about their care

Patient Information Forum 2015

Were you involved as much as you wanted to be in decisions about your care and treatment?

54 54 53 53 52 51 52 52 52 52 55 56 56 60

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% responding ‘Yes, definitely’

Source: NHS inpatient surveys

Searching for Health Information

Harms

minimized

Benefits

exaggerated

Health Information is Often Unbalanced

Doctors and Patients may Disagree on Priorities

Condition: Goal Pat Dr p

Keep your breast? 71%

Live as long as possible? 96%

Look natural without clothes 80%

Avoid using prosthesis 0%

Lee C N et al. Ann Plast Surg 2010; 64(5): 563-6

Doctors and Patients may Disagree on Priorities

Condition: Goal Pat Dr p

Keep your breast? 7% 71% P<0.01

Live as long as possible? 59% 96% P=0.01

Look natural without clothes 33% 80% P=0.05

Avoid using prosthesis 33% 0% P<0.01

Lee C N et al. Ann Plast Surg 2010; 64(5): 563-6

Clinician

• Diagnosis

• Disease aetiology

• Prognosis

• Treatment options

• Outcome probabilities

Patient

• Experience of illness

• Social circumstances

• Attitude to risk

• Goals, values, preferences

Sharing Expertise

Shared Decision Making

Clinicians and patients working together to select tests, treatments, management or support options based on clinical evidence and the patient’s informed preferences.

What Patients Need to Know

• What are my options?

• What are the benefits and possible harms?

• How likely are these benefits and harms?

• How can you help me make a decision that right for me?

Key Components of Shared Decision Making

1. Information Reliable, balanced, evidence-based information outlining prevention, treatment, or management options, outcomes and uncertainties

2. Deliberation Decision support with clinician or health coach to clarify options, preferences, goals and action plan (personalised care planning)

3. Implementation System for recording, communicating and implementing patient’s preferences

Selecting Tests or Treatments

Wellness and Health

Promotion

Managing Long-Term Conditions

Shared Decision Making

Patient Decision Aids can Help

• Tools to help people participate in decision-making

• Provide information on options

• Help patients clarify and communicate their values and preferences

Breast Cancer Decision Explorer (BresDex; www.bresdex.com).

Ahmed H et al. BMJ 2012;344:bmj.e3996

©2012 by British Medical Journal Publishing Group

Patient Decision Aids: the Evidence

• In 115 trials involving 34,444

participants, use has led to:

–Greater knowledge

–More accurate risk perceptions

–Greater comfort with decisions

–Greater participation in decision-making

–Fewer people remaining undecided

–Fewer patients choosing major surgery

Stacey et al. Cochrane Database of Systematic Reviews, 2014

Patient Decision Aids Reduce Rates of Elective Surgery by 20%: Cochrane Review

Shared Decision Making Reduces Use of Antibiotics for Respiratory Tract Infection by 40%: Cochrane Review

Coxeter P, Del Mar CB, McGregor L, Beller EM, Hoffmann TC. Interventions to facilitate shared decision making to address antibiotic use for acute respiratory infections in primary care. Cochrane Database of Systematic Reviews 2015, Issue 11. Art. No.: CD010907. DOI: 10.1002/14651858.CD010907.pub2.

Shared Decision Making in Orthopaedics

• Hip: 820 intervention vs 968 control

• Knee: 3,510 intervention vs 4,217 control

• 26% fewer hip replacements

• 38% fewer knee replacements

• Estimated cost reduction of 12-21% over six months

Arterburn et al. Health Affairs 2012

PROMs EQ-5D-5L

• Mobility

– I have no problems in walking about

– I have slight problems in walking about

– I have moderate problems in walking about

– I have severe problems in walking about

– I am unable to walk about

• Self-care

– washing, dressing

• Usual activities

– work, study, housework, family or leisure

• Pain/discomfort

– anxiety / depression

+ visual analogue scale

Personal Value for People with Long-Term Conditions

Impact of LTCs

Coping with LTC(s)

Empowerment / sense of control

Social participation

Safe environment

Roles and responsibilities

Achieving personal goals

Loneliness

Dependency / being a burden

Physical activity

Suitability of home

Burden of treatment and

services

Confidence to manage LTC(s)

Stigma

Knowledge & information

Feeling supported

Key Measures

Experience

• Impact of condition

• Quality of communications

• Knowledge and risk perceptions

• Decisions consistent with values

• Services and support

Outcomes

• Health status

• Capabilities

• Quality of life

• Resource use

• Costs

Achieving Personal Value

• Individuals’ goals and values should shape the care they receive

• Public needs to understand the limitations of medical care

• Start by involving patients in decisions about their own care

• Shared decision making leads to more appropriate care

• Personal outcome assessments should guide priority-setting