Presentation at Workshop, HTAi 2012, Bilbao (Spain)

1. Stakeholder Involvement
in KCE Processes
Patrice Chalon24/06/2012
Piérart J., Léonard C., Chalon P., Daue F., Mertens R.
Study nr 2011-73 Methods
KCE Reports 174

2. KCE?
2

3. KCE?
3

4. KCE?
4
• Independent advice to policymakers
on all aspects of
health care and health insuranceWHAT?
• Collect and analyze objective
information from healthcare data,
scientific literature and clinical practice
• Use it to conduct scientific studies and
develop expertise
HOW?

5. Life cycle of a KCE report
Pre-
project
fiche
(PPF)
Project
fiche
Start of
procedures
meetingexperts
meetingexperts
meetingexperts
Pre-report
validation
Report
Publication
report on
website;
Press release
Validation
byBoard
Workprogram
Accepted
byBoard
Study
proposal
Evaluation
byKCE Identify team
(int or ext) ;
if external :
Public call for
tender

6. Rationale
 Already part of KCE’s research,
BUT not systematic or diversified
 Policy challenge
relevant - unambiguous - realistic
 Scientific challenge
openness - scientific rigor and objectivity
6

7. Results
1. Key principles
Literature & International comparison
2. Current experience at KCE
Discussion groups with all experts
3. Strategic objectives
7

8. Key principles – Who?
8
 Stakeholders are those who
o are affected
o have interests
o are able to influence

9. Key principles – Why?
9
 General objectives
o openness
o transparency
 Specific objectives
o gathering information
(relevant questions - unambiguous results - realistic recommendations)
o identification of controversy

10. Key principles – How?
10

11. Key principles – How?
11

12. Key principles – How?
12
 Skills
o Trustworthiness and respect
o Own involvement
o Openness; ‘perplexity’
o Objectivity and fairness
o Leadership and support

13. Current experience at KCE
Learnings
1. Longstanding practice
2. Involvement of Board
3. Involvement of Communities
4. To be understood by...
5. Stakeholders vs experts
Requests
6. Independence is a priority
7. Clear distinction to include in
the report
8. Training
9. Evaluation of impact
10.Knowledge base of
Stakeholders
Opportunities
11. Motivations of SH involvement
12. Adaptation to each project
13. Several levels of involvement
are possible
14. Key values are crucial
15. Steering committee
16. EMA and citizen’s panel
Fears
17. Timing is an obstacle
18. Patient’s involvment is the
most difficult
19. Ready to share all
information?
13

14. Strategic objectives
1.Make
subject
tangible
2.Get scope
and research
questions
right
3.Gain
acceptance
of methods
4.Reach
realistic
answers
5.Get
effective
communicati
on channels
Policy makers /
Institutions
Payers
Patients
Health care
profesionals
Industry
Academics
Press
14

15. Strategic objectives
Stakeholder
involvement
approaches
1.Make
subject
tangible
2.Get scope
and research
questions
right
3.Gain
acceptanc
e of
methods
4.Reach
realistic
answers
5.Get
effective
communi
cation
channels
Search press
+ +
On-site visits
K +
Individual interviews ‘typical’
stakeholders K K + +
Individual interviews key
informants + K + K
Focus groups
K + x
Discussion forum
K K K
Delphi methods
 +  +
Scenario Building Exercise
 + 
Consensus conference
 +  +
Deliberative polling
 
Online discussion groups/list
servers  +
Survey (Web, telephone, paper
self-administered, ...) K +
Use of social media
+  + +
Workshop
+ + K +
15

16. Strategic objectives
APPROACH 1 – On-site visits to healthcare providers or institutions
Example(s) KCE Reports 20 [Molecular Diagnostics in Belgium], 2005
KCE Reports 46 [Home Monitoring of Infants in Prevention of
Sudden Infant Death Syndrome], 2006
Objective Make the subject tangible (with the focus on the clinical and
practical aspects).
Timing At the onset of the project.
Who to
involve?
Providers/healthcare institution currently using the technology
(HTA) or providing the service (HSR) under study, or caring for
the condition covered by the guideline.
Selection Not necessarily via representative organizations; rather via
personal contacts; look for large-volume centres and quality-
conscious providers.
Level of
involvement
Information of the researchers.
Motivation Avoiding a purely theoretical stance.
Desired
output
Good grasp of the concrete (clinical) practicalities of a
technology, service or diagnostic or therapeutic approach,
including the regulatory/financial particularities (if debatable).
Appropriate
format
Non-interfering observation of the actual clinical processes,
alternated/followed by discussion with the providers and (if
needed and feasible) with patients. In any case, informed
consent is to be obtained from the patient.
Ideally, all researchers involved in the study should participate.
In practice, at least those involved in the editing of the
discussion and conclusions.
Duration ½ to 1 day.
Prior
information
need
Stakeholders need little prior information.
Researchers could benefit from prior acquaintance with the
technology, medical condition, jargon, regulatory framework.
Preparatory
material
None, or a set of remaining questions after preparatory
reading work.
Deliverable Brief description of the meeting (who, when , where), no
other specific deliverable; an introductory chapter of the final
study report, describing the problem, technology or service,
may benefit from the personal observation notes of the
researchers.
Follow-up In principle not applicable.
Level of
controversy
In theory, out of scope for this method; in practice, the very
fact that the researches belong to the KCE may create specific
perceptions among the providers, and bring out potentially
controversial aspects during the visits. Hence, the nature of
the visit, its objectives and the function in the project should
be made very clear.
Confidentiality All observations, and, a fortiori, all patient-related information
should remain strictly confidential.
Limits As representativity is not aimed for, the observations of the
researchers cannot be considered to be formal results, and do,
as such, not appear in the study report.
Risks of the
method
Perception bias and preconceptions in the researcher, based
upon a very limited, but potentially strong personal
experience. This could require to express these potential
preconceptions and test them with other actors, preferentially
with opposing views.
How to
evaluate?
Absence of signals that “researchers do not really know what
they are talking about” or similar suggestions.
16
APPROACH 1 – On-site visits to healthcare providers or
institutions
Example(s) KCE Reports 20 [Molecular Diagnostics in Belgium],
2005
KCE Reports 46 [Home Monitoring of Infants in
Prevention of Sudden Infant Death Syndrome], 2006
Objective Make the subject tangible (with the focus on the clinical
and practical aspects).
Timing At the onset of the project.
Who to
involve?
Providers/healthcare institution currently using the
technology (HTA) or providing the service (HSR) under
study, or caring for the condition covered by the
guideline.

17. Next steps
Process
notes
17
Trainings

18. 18
THANK YOU!