Presentation on theme: "Transparency: Should CF-care centers ”open their books” and publish treatment outcomes? PRO by Erik Wendel, Danish Cystic Fibrosis Association Hamburg."— Presentation transcript:
Transparency: Should CF-care centers ”open their books” and publish treatment outcomes? PRO by Erik Wendel, Danish Cystic Fibrosis Association Hamburg 2010 - Cystic Fibrosis Europe Symposium
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
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
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
__________________________________________________________________________________________________ Year 2000-2006 Age ave. Age spread __________________________________________________________________________________________________ 2006 (19 patients) 28,21 yrs15 - 38 yrs 2005 (9 patients) 26,44 ysr11 - 42 yrs 2004 (4 patients) 18,50 yrs09 - 18 yrs 2003 (6 patients) 34,50 yrs22 - 52 yrs 2002 (9 patients) 24,33 yrs 11 - 35 yrs 2001 (8 patients) 30,38 yrs22 - 45 yrs 2000 (9 patients) 23,44 yrs10 - 34 yrs __________________________________________________________________________________________________ 64 patients Age at death with out transplantation Age at transplantation CFF 2007 Danish patients death/TX 2000-2006
Copenhagen (east) vs Skejby (vest) Z-score BMI, children born after 01.01.1990, patients del508 homozygotes
Copenhagen (east) vs Skejby (vest) Lung function FEV1 of predicted, children born after 01.01.1990, patients del508 homozygotes
Data are not different Data are different DK Reactions to 2005 Data Outcomes
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
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
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
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.
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