1. How Patients and Carers can Influence Service Improvement
Discovery Interviews
Dr Jeffrey Phillips
Consultant in Intensive Care Medicine
Princess Alexandra Hospital, Harlow

2. NHS Modernisation Agency Critical Care Programme
Improve access, experience and outcomes for patients with potential or actual need for critical care

3. Why? The New NHS (1997) Critical to Success (1997)
Comprehensive Critical Care (2000)
NHS Plan (2000)
Shifting the Balance of Power (2001)
NHS Reform Act (2002)
The Kennedy Report (2001)
Commission for Health Improvement

4. Patients are our raison d’être
Why?
Patients are our raison d’être

5. Aim Patients and Carers to influence change
To understand what patients and carers perceive as important
New ways of working
Inclusive approach

6. “Change has become a constant; managing it has become an expanding discipline. The way we embrace it defines our future.”

7. Audit or Research? Audit or qualitative research
Informing about previous experience
New information sought
Approval for project
LREC
MREC

8. Patient and Carer Participation
Questionnaires
Low response rate
Questions set by professionals
Cover limited aspects of service
Results seldom improve care
Groups
Inhibition of introverts
Clash of opinion
Directed by professionals

9. Discovery Interviews
Provide opportunities for patients and their carers to directly tell the story of their illness or condition using a framework that guides them through the key stages of their experience
We cannot just ask people what their needs are, we do not think this way.
And so the idea of Discovery Interviews was born.
Describe the two main points above, emphasise the focus on
experience of illness not care.
They weave stories of their care into their accounts
but in their own way using their own language.

10. Using Narratives Reflection Listeners must ask: Action
“What is learned from the narrative?”
“What needs to change?”
Action
“How can change happen?”

11. Discovery Interviews Semi-structured No formal direct questions
Interview spine derived from process mapping
Process map simplified

12. Discovery Interview Spine
First realising something was wrong
Getting to the Critical Care Unit
Being in the Critical Care Unit
Leaving the Critical Care Unit
Being on the Ward
Going Home
At Home

13. Discovery Interviews
Subject encouraged to talk about experiences at each stage
Interviewer avoids direct questioning
Audio-recorded
Transcribed

14. Analysis
Process initiated by the team in order to learn about the patient and carers experience
Non-confrontational process
Teams listen to uninterrupted narratives
Stories and narratives are a great leveller

15. Action Identify areas requiring improvement Immediate Change
Process Mapping & PDSA
Service commissioning
Testament v Anecdote
Other areas for further inquiry

16. Improvements
Orientation of patients when waking from a period of sedation
Strengthen pre-assessment phase of a patient’s journey
Communication and information
Noise

17. Those in power to learn from our experiences
The Future
Continue improving!
Roll out to all 29 Critical Care Networks
Different subject groups
The bereaved
Cascade throughout Trust
Those in power to learn from our experiences

18. Summary Learning from Patient and Carer stories
Powerful tool to understand from the
Patients’ and Carers’ perspective
Patients and Carers able to provide a
comprehensive picture of both
recollections and experiences
Strengthened partnerships