Response to “Patient organisations should also establish databanks on medical complications”

• Published in: Journal of medical ethics Vol. 30; no. 6; pp. 609 - 610
• Main Authors: Marang-van de Mheen, P J, Kievit, J
• Format: Journal Article
• Language: English
• Published: England BMJ Publishing Group Ltd and Institute of Medical Ethics 01.12.2004; BMJ Publishing Group; BMJ Publishing Group LTD; BMJ Group
• Subjects: Adverse Drug Reaction Reporting Systems; adverse outcomes data; Confidentiality; Consumer information; Databases, Factual; Health care organizations; Health outcomes; Hospitals; Humans; Information relevance; Journalists; Letter; Letters; Medical errors; Medication Errors; Patient Advocacy; patient organisations; Patients; Registration; Surgeons; Health Care and Public Health
• ISSN: 0306-6800; 1473-4257
• DOI: 10.1136/jme.2003.005850

In this respect one may compare the development of such a national registry to the development of a new drug, in which case no one argues about confidentiality and thorough testing until proved safe. [...]a pharmaceutical company will probably be sued if it markets a new drug without proper research. Patients experience many difficulties in getting access to relevant information from doctors' organisations and insurance companies. [...]the NPCF wants to cooperate with these organisations to create consumer information based on the important and relevant data that are available.