197711 Informed consent to record linkage: A systematic review

Monday, November 9, 2009

Claudia Medina Coeli, MD PhD , Instituto de Estudos em Saúde Coletiva, Universidade Federal do Rio de Janeiro, Rio de Janeiro, Brazil
Eduardo Moura Assad Monteiro dos Santos , Instituto de Estudos em Saúde Coletiva, Universidade Federal do Rio de Janeiro, Rio de Janeiro, Brazil
Thais Medina Coeli Rochel de Camargo Camargo , Centro de Pesquisa e Documentação de História Contemporânea do Brasil (CPDOC), Fundação Getúlio Vargas, Rio de Janeiro, Brazil
Kenneth Rochel de Camargo, MD PhD , Instituto de Medicina Social, Universidade do Estado do Rio de Janeiro, Rio de Janeiro, Brazil
Background: Record linkage methods have been widely used in public health research but its use demands the discussion of privacy issues. Purposes: To systematically review studies which address informed consent and record linkage. Methods: A computer-assisted search of the PubMed electronic databases up to November 2008 was performed using the following terms: “record linkage” and “consent”. We included articles published in the following languages: Portuguese, Spanish, English and French. Study selection and data extraction was conducted independently by two reviewers. Results: Out of 52 citations, we identified 49 studies eligible for inclusion. 71.4% of articles were published after 2000, coinciding with the introduction of laws addressing privacy of health information in different countries. Articles were published in Medical (26; 53.1%), Public Health (12; 24.5%); Law – (6; 10.2%) and Informatics (5; 10.2%) journals. With regard to the country of the main author's institution of affiliation, there is a predominance of UK, USA and Canada, countries with longer running traditions in using record linkage techniques and where the oldest integrated health record registries using such methods are located. The majority of the studies are theoretical, with no empirical data about the actual proportion of participant consent. Conclusion: Despite the increasing utilization of record linkage techniques in research, the issues related to participant consent are not yet adequately addressed.

Learning Objectives:
Demonstrate the relevance of informed consent in research using record linkage techniques

Keywords: Health Information, Bioethics

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am the principal investigator of the underlying research project
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.