Patient Involvement in Germany - Guidelines International Network

Patient Involvement in Germany – How and when?
Schaefer C, Nothacker M, Bunk T, Conrad S, Fishman L, Langer
T, Meyerrose B, Schwarz S, Weikert B, Ollenschlaeger G
German Agency for Quality in Medicine ÄZQ, Berlin
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Patient Involvement
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• patient involvement – why?
• guideline development in Germany
• methods
• results
• conclusions
Chicago, August 26th, 7th International G-I-N Conference, Corinna Schaefer, German Agency for Quality in Medicine, äzq
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Patient Involvement
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patient involvement in CPG
assures and improves quality of
health care.
patient involvement is an
important tool for guideline
implementation.
Chicago, August 26th, 7th International G-I-N Conference, Corinna Schaefer, German Agency for Quality in Medicine, äzq
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Patient Involvement
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• patient involvement – why?
• guideline development in Germany
• methods
• results
• conclusions
Chicago, August 26th, 7th International G-I-N Conference, Corinna Schaefer, German Agency for Quality in Medicine, äzq
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Guideline Development in Germany
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No national
institution for
guideline
development.
All scientific medical
societies develop
their own guidelines.
Chicago, August 26th, 7th International G-I-N Conference, Corinna Schaefer, German Agency for Quality in Medicine, äzq
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Guideline Development in Germany
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Chicago, August 26th, 7th International G-I-N Conference, Corinna Schaefer, German Agency for Quality in Medicine, äzq
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Guideline Development in Germany
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guidelines registred and classified
by the AWMF
National Guidelines Programs:
‣ National Disease Management
Guidelines Program
‣ German Guideline Program in
Oncology
Chicago, August 26th, 7th International G-I-N Conference, Corinna Schaefer, German Agency for Quality in Medicine, äzq
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Guideline Development in Germany
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classification of guidelines according to AWMF
S1
no systematic literature search
no formal consensus process
S2
systematic literature search
or
formal consensus process
S3
systematic literature search and assessment of
the evidence
strength of guideline recommendation according
to the level of evidence
formal consensus process
Chicago, August 26th, 7th International G-I-N Conference, Corinna Schaefer, German Agency for Quality in Medicine, äzq
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Patient Involvement
9
• patient involvement – why?
• guideline development in Germany
• methods
• results
• conclusions
Chicago, August 26th, 7th International G-I-N Conference, Corinna Schaefer, German Agency for Quality in Medicine, äzq
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Methods
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the actual evidence-based
guidelines (S2 and 3)
have been assessed
according to DELBI
theguidelineshavebeen
assessed independently
by two experts
„German Instrument
for Methodological
Guideline Appraisal “
different results have
been discussed
the two experts have
agreed about the final
results
Chicago, August 26th, 7th International G-I-N Conference, Corinna Schaefer, German Agency for Quality in Medicine, äzq
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Domain 2, Question 5
„Patients‘ views and preferences have been sought“
strongly disagree
1 2 3 4
strongly agree
1 - patients are not involved or involvement has not been
documented
2 - patients have been involved indirectly (i.e. by a review or
public discussion)
3 - patients have been involved directly as members of the
guideline development group
4 - decisional implications of patient involvment have been
documented
Chicago, August 26th, 7th International G-I-N Conference, Corinna Schaefer, German Agency for Quality in Medicine, äzq
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Results I
120
100
patients
involved?
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80
60
40
S3
S2
total
20
0
not involved indirectly directly contributions
documented
N=152
Chicago, August 26th, 7th International G-I-N Conference, Corinna Schaefer, German Agency for Quality in Medicine, äzq
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Results II
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a methodology of patient involvement?
6 guidelines with a defined methodology of
patient involvement being part of German
National Guideline Programs
no
yes
N = 51
Chicago, August 26th, 7th International G-I-N Conference, Corinna Schaefer, German Agency for Quality in Medicine, äzq
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Results III
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patients were involved in guideline development in
less than 35%.
in less than 5%, patient involvement followed a
defined methodology
the guidelines having a defined methodology of
patient involvement were part of National Guideline
Programs
Chicago, August 26th, 7th International G-I-N Conference, Corinna Schaefer, German Agency for Quality in Medicine, äzq
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Patient Involvement
16
• patient involvement – why?
• guideline development in Germany
• methods
• results
• conclusions
Chicago, August 26th, 7th International G-I-N Conference, Corinna Schaefer, German Agency for Quality in Medicine, äzq
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Conclusions
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Being an important implementation tool, patient
involvement should become a standard in
guideline development.
Especially in terms of transparency in nomination
of patient representatives and funding, patient
involvement should be based upon a defined
methodology.
A defined methodology of patient involvement was
found only within National Programs. Adaptation of
this methodology by other guideline developers
may enhance patient involvement in Germany.
Chicago, August 26th, 7th International G-I-N Conference, Corinna Schaefer, German Agency for Quality in Medicine, äzq
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Chicago, August 26th, 7th International G-I-N Conference, Corinna Schaefer, German Agency for Quality in Medicine, äzq
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