Transparency: Should CF-care centers ”open their books” and publish treatment outcomes? PRO
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Transcript of Transparency: Should CF-care centers ”open their books” and publish treatment outcomes? PRO
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Transparency: Should CF-care centers”open their books” and
publish treatment outcomes?
PRO
byErik Wendel, Danish Cystic Fibrosis Association
Hamburg 2010 - Cystic Fibrosis Europe Symposium
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Ref. Jim Littlewood, CF Trust , UK
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A tool for doctors:
• Obtain information to keep on record • Evaluate treatment result• Make new, or change present treatment methods/strategies• Pass information to others• Pass ways of good practice to other – avoid pitfalls• Setting treatment goals• Transparency• Stand up for what You do, and what You belive in
A tool for patients:
• Quality improvement• Access to information about other treatment strategies• Quicker access to new/other treatments
Why Data Collection and Publishing
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Ref. Michael P. Boyle, NACFC 2007
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http://www.cff.org/CCNP/CareCenterReporting/index.cfm?CCaction=PerformanceSummary&IDCC=84
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http://www.cff.org/CCNP/CareCenterReporting/index.cfm?CCaction=PerformanceSummary&IDCC=6
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Open data must come withopen CF Care Centertreatment standards
(What they do, how they do it )
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• The US have opened the data door
• EU and US doctors have agreed on methods, data collection and what to publish
• Europe will have to follow with open data too
• Patient organisation can speed up this process
• We have passed the Point of No Return
Open data - Where are we
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• 450 patients
• 2 CF Care Centers
Rigshospitalet (RH - East Denmark) established 1967 300 pts (100 children, 200 adults) Registration of patient data since 1967
Skejby (SKS - West Denmark) established 1990 App. 150 pts, (80 children, 70 adults) No official registration before 2000
• Year 2001: Danish Registry (RH + SKS)
• Year 2007: Published data - Country vs. Center
Why Open Data - The Danish Story
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__________________________________________________________________________________________________
Year 2000-2006 Age ave. Age spread__________________________________________________________________________________________________
2006 (19 patients) 28,21 yrs 15 - 38 yrs2005 (9 patients) 26,44 ysr 11 - 42 yrs 2004 (4 patients) 18,50 yrs 09 - 18 yrs2003 (6 patients) 34,50 yrs 22 - 52 yrs2002 (9 patients) 24,33 yrs 11 - 35 yrs2001 (8 patients) 30,38 yrs 22 - 45 yrs2000 (9 patients) 23,44 yrs 10 - 34 yrs__________________________________________________________________________________________________
64 patientsAge at death with out transplantationAge at transplantation CFF 2007
Danish patients death/TX 2000-2006
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2006 Sex Center Born TX † -TX Age ∆ SKS ∆ RH Notes
1 M SKS 1972 TX 34 2 M SKS 1973 TX 33 3 K SKS 1973 TX 33 4 M SKS 1978 TX 28 5 M SKS 1978 TX 28 6 K SKS 1979 † 27 7 K SKS 1981 TX 25 8 K SKS 1981 TX 25 9 K SKS 1983 † 23
10 K SKS 1985 TX 21 11 M SKS 1985 † 21 12 K SKS 1986 TX 20
13 K SKS 1991 † 15 25,61 13/150 = 8,67%
1 M RH 1968 TX 38 2 M RH 1971 TX 35 3 M RH 1972 TX 34 4 K RH 1972 TX 34 5 M RH 1974 † 32
6 M RH 1976 TX 30 33,83 6/300 = 2%7 M RH 1987 † 19 Car accident
2005 Sex Center Born TX † -TX Age ∆ SKS ∆ RH Notes
1 K SKS 1964 TX 41 2 K SKS 1973 † 32 3 K SKS 1980 † 25 4 M SKS 1983 TX 22 5 M SKS 1985 TX 20 6 K SKS 1994 † 11 25,17 6/150=4%
1 M RH 1963 TX 42 2 K RH 1979 TX 26 3 K RH 1986 TX 19 29,00 3/300=1%
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Investigation of more detailed data needed
Why Open Data - The Danish Story
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Copenhagen (east) vs Skejby (vest)Z-score BMI, children born after 01.01.1990, patients del508 homozygotes
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Copenhagen (east) vs Skejby (vest)Lung function FEV1 of predicted, children born after 01.01.1990, patients del508 homozygotes
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Data are not different
Data are different
DK Reactions to 2005 Data Outcomes
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Stage 1: The data are wrong
Stage 2 The data are right, but it’s not a problem
Stage 3 The data are right; It is a problem; But it’s NOT my problem
Stage 4 I accept the burden of improvement
Typical reactions to Data Outcomes
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What data to go for?
• Overall data on FEV1 and BMI, children and adults, is a good start.
• BUT most CF patients die from chronic lung infection with Pseudomonas, Burkholderia, Achromobacter etc.
• THEREFORE data on how our CF Care Centres handle and treat these infections, and the clinical output they get, IS IMPORTANT AND URGENT FOR PATIENTS
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NACFConference 2008
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NACFConference 2008
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Christine Rønne Hansen, 2009
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Christine Rønne Hansen, 2010
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Christine Rønne Hansen, 2010
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Factors which affect the outcome of CF
• CF mutations + ’modifier genes’.- all mutations demand treament when lung infection is present
• Lung infection (main cause of death in CF)- Infection type (pseudomonas, burkholderia, achromobacter etc.)- Treatment - Age when infection debut- Individuel reaction to infection (immunrespons)- Individuel reaction to treatment (allergy)- Not possible to predict individual treatment effect or output
• The individual approch – Living with CF - Acceptance - Understand CF as a disease and it’s development - Capabillty of action
• Social factors - country vs city (zip codes), education, family situation
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PRO - Take Home Messages
• Most patients do not wish to change CF Care Center.
• Patients just want their doctors to give them access to the treatments with best clinical output.
• For patients, it’s not important by whom a treatment has been developed, as long as it works.
• Open data and open treatment standards bring the ’best treatments’ to patients faster.
• Open data and open treatment standards may expose the practice of some doctors. It may hurt doctors egos and personal feelings,
• BUT - The patients always come first.
• We pay the ultimate price for bad choices - with our lives.