1. Involving and Empowering Patients
Angela Coulter, PhD
@acpatient
HSE Healthcare Leadership Masterclass, Dublin April 27th 2017

2. Overview What is person-centred care and why is it important?
How can patients be more involved in their care?
How can we ensure high value care for all?

3. Angela Coulter
A definition of person-centred care – care that is personalised, coordinated, and enabling, where everyone is treated with dignity, compassion and respect.
HSE Dublin

4. Today’s Healthcare Through Patients’ Eyes
Angela Coulter
Today’s Healthcare Through Patients’ Eyes
Problems with the way much modern healthcare is delivered
HSE Dublin

5. Disempowering Encourages passivity and dependency
Undermines self-reliance

6. Inflexible and Rule-Bound
Assumes everyone wants/needs the same type of care
No room for personal goals
Rigid, controlled by professionals/system managers/regulators

7. Complex and Fragmented
Not integrated
Uncoordinated
Confusing
Burdensome for patients and carers

8. Angela Coulter
Co-Production = promoting productive partnerships to tackle difficult problems together
‘with’, not ‘to’ or ‘for’
‘what matters to you?’, instead of ‘what’s the matter with you?’
A person-centred approach embraces the principle of co-production.
HSE Dublin

9. What Matters to You (individual)?
I want to continue living in my own home for as long as possible
I want help to manage my pain so I can sleep better and be more active
I need advice on how to eat a healthy diet to control my diabetes

10. What Matters to You (group)?
We want fast access to good, safe, joined-up local services
We wish more could be done to stop people getting ill in the first place
We think you should provide better help for older, frailer people so they can stay in their own homes

11. Searching for Health Information

12. What Patients Need to Know
Angela Coulter
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’s right for me?
HSE Dublin

13. Health Information is Often Unbalanced
Harms
minimized
Benefits
exaggerated

14. Shared Decision Making
Clinicians and patients working together to select tests, treatments, management or support packages, based on clinical evidence and the patient’s informed preferences.
Coulter and Collins. Making Shared Decision Making a Reality. King’s Fund 2011

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

16. Appraising Options and Trade-Offs
Risk of complications

17. Patient Decision Aids can Help
Angela Coulter
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
HSE Dublin

18. Angela Coulter
HSE Dublin

19. Angela Coulter
Pictograph to explain reduction in cardiovascular risk from taking statins in people with a moderate risk of a cardiovascular event
(20% over 10 years)
Fig 2 The NHS National Prescribing Centre provides pictographs to help explain the reduction in cardiovascular risk from taking statins in people with a moderate risk of a cardiovascular event (20% over 10 years). For more details see
Ahmed H et al. BMJ 2012;344:bmj.e3996
©2012 by British Medical Journal Publishing Group
HSE Dublin

20. Breast Cancer Decision Explorer (BresDex; www.bresdex.com)
Angela Coulter
Breast Cancer Decision Explorer
(BresDex;
Fig 3 Breast Cancer Decision Explorer (BresDex; A decision aid to help women with breast cancer choose between mastectomy and breast conserving surgery
Ahmed H et al. BMJ 2012;344:bmj.e3996
©2012 by British Medical Journal Publishing Group
HSE Dublin

21. Patient Decision Aids: the Evidence
Angela Coulter
Patient Decision Aids: the Evidence
In 105 trials involving 31,043 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 D et al. Cochrane Library 2017
HSE Dublin

22. Rise in multi-morbidity …
Work done by Stuart Mercer and colleagues in Scotland looking at the data from 300 general practices.
The blue shaded area represents those people wo have no long term conditions. Red is those with 1 LTC; the pale green with 2, and so on. You get the picture. What this means is that looking at the overall picture by the time people get to the age of about ¾ will have at least 1 LTC, of which 50% of the total population will have at least 2 or more LTCs. This is the world we are operating in now as the population gets older.
Barnett et al. Lancet 2012; 380: 37-43

23. Managing Long Term Conditions
Angela Coulter
Managing Long Term Conditions
Professional care –
3 hours per year (1 x 15 mins per month)
Self-care –
8,757 hours per year (99.9%)
HSE Dublin

24. Personalised care planning
Angela Coulter
Personalised care planning
Conversation between a patient and a clinician to jointly agree goals and actions for managing the patient’s health problems.
Aim: to help people live well, focusing on their goals and concerns and supporting their capacity for self-care.
HSE Dublin

25. Care Planning Conversations
Angela Coulter
Care Planning Conversations
Patient’s agenda
Professional’s agenda
Information gathering
Information sharing
Information sharing
In personalised care planning the patient’s priorities are just as important as the professional’s focus on clinical procedures.
Goal setting and action planning
Agreed and shared care plan
HSE Dublin

26. Care planning cycle 1. Preparation 2. Goal setting 3. Action planning
Angela Coulter
1. Preparation
2. Goal setting
3. Action planning
4. Documenting
5. Coordinating
6. Supporting
7. Reviewing
Care planning
cycle
Care planning is a process, not a one-off event.
HSE Dublin

27. Self-Management Education
Angela Coulter
Supporting
Health Coaching
Self-Management Education
Telehealth
Community groups
Peer support
More than medicine - community support may be just as useful as that from health professionals.
HSE Dublin

28. Involving Patients in Personalised Care Planning
Angela Coulter
Involving Patients in Personalised Care Planning
In 19 trials involving 10,856 participants, personalised care planning led to:
Better physical health (blood glucose, blood pressure)
Better emotional health (depression)
Better capabilities for self-management (self-efficacy)
Coulter et al. Personalised care planning for adults with chronic or long-term health conditions. Cochrane Database of Systematic Reviews, 2015
HSE Dublin

29. Care planning works best when it is ………
Angela Coulter
Care planning works best when it is ………
Comprehensive:
more stages of care planning cycle completed
Higher intensity
more contacts over a longer period
Integrated with usual care
usual doctor informed and involved
Well-supported
training, supervision and support for clinicians as well as patients
Additional findings from our Cochrane review.
HSE Dublin

30. Why Measure? To track public attitudes to the health system
To identify and monitor problems in care delivery
To facilitate performance assessment and benchmarking
To help professionals reflect on their practice
To inform service redesign and monitor impact of changes
To promote informed choice of provider
To enable public accountability and transparency

31. How to Measure? Self-completion postal surveys Interviewer surveys
Quantitative
Qualitative
Self-completion postal surveys
Interviewer surveys
Telephone surveys
Online surveys
Tablet surveys
Routine data
In-depth interviews
Focus groups
Online free text
Suggestion boxes
Complaints and compliments
Mystery shopping

32. What to Measure? Patients’ experience of care (PREMs)
Angela Coulter
What to Measure?
Patients’ experience of care (PREMs)
Patient-reported outcomes (PROMs)
Public attitudes and opinions
(population surveys)
HSE Dublin

33. Were you involved as much as you wanted to be in decisions about your care and treatment?
% responding ‘Yes, definitely’ %
Source: National Inpatient Surveys Care Quality Commission June 2016, n=83,000+

34. Problems by Health Status (LTCs)
Hewitson et al. BMC HSR 2014

35. Measurement is Not Enough

36. Hearts and Minds Matter More
Some common objections
“We do it already”
“We don’t have the right tools”
“Patients don’t want it”
“We have too many other demands and priorities”

37. Essential Elements of a Change Strategy
Strong, committed senior leadership
Dedicated champions
Active engagement of patients and families
Clear goals
Focus on the workforce
Building staff capacity
Adequate resourcing
Performance measurement and feedback
Coulter A et al BMJ 2014, 308: 225

38. Summary of key factors influencing implementation of shared decision making (SDM)
Fig 2 Summary of key factors influencing implementation of shared decision making (SDM). (QOF=Quality and Outcomes Framework)‏
Natalie Joseph-Williams et al. BMJ 2017;357:bmj.j1744
©2017 by British Medical Journal Publishing Group

39. High Integrity Health Systems
Prevailing assumptions
Contrary evidence
New care models
More healthcare produces more health
Social circumstances contribute more to health
Integrate services around people’s needs and wants and tackle broader determinants of health
Clinical evidence alone tells us the right things to do in healthcare
Evidence is insufficient; patients’ preferences matter too
Engage, inform and support patients; identify and act on their needs and wants
Healthcare is the delivery of services by professionals to people unable to understand or do for themselves
Much of healthcare is exchange of information about what is possible and most valued
Leverage joint assets of people and professionals to co-produce better health and wellbeing at lower cost
Mulley A et al. BMJ 356: Mar 30, 2017

40. Summary
People want healthcare that is personalised, coordinated, respectful and enabling
Involving patients in decisions leads to more appropriate and more effective care
Quality improvement is complex – measurement and feedback can help but hearts and minds matter more
A whole systems approach that challenges prevailing assumptions is the way forward