1. Learning from the patient perspective: from etic to emic research strategy
Incident Disclosure conference, AMC October 2016
Josje Kok

2. Context
The Dutch scenario: (legal framework Wkkgz, 2016)

3. Theoretical context Why involve the patient?
‘It is the right thing to do’
It is important for patients to share their experience; valuable for acceptance / supporting grieving process and regaining trust
Focus on individual rights and needs (Birks et al. 2014; Legemaate 2015;
existing open disclosure frameworks)
‘We can learn from the patient perspective’
Using patient’s knowledge to support efforts to improve safety
Recognizes that patient perspective divers from professional perspective
Focus on system based learning / patient centered healthcare
(Iedema et al. 2011; Rowely & Waring 2011; Much 2004; Zimmerman & Amori 2007)

4. Hospitals increasingly involve patients in RCA
Statistics: (Dutch Health Care Inspectorate, October 2016)

5. Methods
Research findings from ongoing PhD research project ( )
Via snowball sampling:
In-depth interviews in Dutch hospitals (N=13)
General, university and tertiary hospitals
Respondents ranged from: RCA researchers, Committee chairs / secretaries and Quality & Safety Managers
Examine / collect work protocols
Inductive thematic content analysis

6. Involving the patient (1)
What does ‘involvement’ entail?
All 13 hospitals involve patients, 12 also involve next of kin
(Note: “when applicable” and “when they wish to be involved”)
Patient involvement in RCA = one interview
Routines differ!
Invitation / communication: formal vs. informal
Location: at hospital, at home, by telephone
Timing
Participants involved
Use of patient support person / complains officer

7. Involving the patient (2)
Challenges
Dealing with emotions: some RCA researcher find this difficult,
others do not
Managing distrust & expectations
Legal challenges
Timing: working at the pace of the patient?

8. Value of the patient perspective? (1)
To verify/confirm operational and technical details: sometimes important discrepancies are identified moving the research in new directions
Other reasons to engage patients:
Providing room to share experiences / emotions
Displaying empathy
Providing information
Regaining trust / restoring faith (possibly avoid legal action)

9. Value of the patient perspective? (2)
“What I’ve noticed is that the information provided by the patient is mostly not taken up in the report. (…) They just share their experiences.”
“Sometimes we identify discrepancies but yeah, that’s where it ends because, well you can’t verify it with facts, it’s something someone says, it’s the patient’s point of view.”
RCA researcher and Quality & Safety Manager

10. The ‘etic’ versus ‘emic’ perspective
Outsider perspective
Emic
Insider perspective
The research strategy that emphasizes the observer’s rather than the natives’ explanations, categories and criteria of significance
The research strategy that focuses on native explanations and criteria of significance
(Kottak, 2004)

11. Using the ‘emic’ perspective (1)
Let the patient’s explanations & criteria of significance inspire you!

12. Using the ‘emic’ perspective (2)
“(…) The other day we investigated an adverse event which was brought to our attention via a complaint. (…)
The central research question was, ‘was care delivered according to protocol?’ Obviously the patient wasn’t happy. (…)
Everyone was zooming in on the protocol but it was vague, could be interpreted from different angles. One professional thought this, the other expert and complains commission thought that. (…)
The researchers were stuck?
Yes. Our focus on the protocol just wasn’t going to help. So we turned it around and asked: ‘did we place this patient’s needs first? And did we follow up on those needs?’ Because that’s what we want in this hospital, that’s our norm.’ (…)
Adapted interview fragment, Committee Chair

13. Moving beyond symbolic practices:
Future directions (1)
Moving beyond symbolic practices:
Train RCA researchers in interviewing techniques, active listing, analyzing data inductively
Invite patients to formulate (research) questions
Experiment with patient or a patient representative on the research team
Inspectorate: time frame must be reconsidered

14. Future directions (2) Concluding note:
Make patient participation in RCA a central pillar in the open disclosure framework

15. Josje Kok / kok@bmg.eur.nl
Questions?
Thank you
Josje Kok /