"Whose data is it anyway?" The implications of putting small area-level health and social data online.
Data from electronic patient management systems, routine national health databases, and social administrative systems have increased significantly over the past decade. These data are increasingly used to create maps and analyses communicating the geography of health and illness. The results of these analyses can be easily disseminated on the web often without due consideration for the identification, access, ethics, or governance, of these potentially sensitive data. Lack of consideration is currently proving a deterrent to many organisations that might otherwise provide data to central repositories for invaluable social science and medical research. We believe that exploitation of such data is needed to further our understanding of the determinants of health and inequalities. Therefore, we propose a geographical privacy-access continuum framework, which could guide data custodians in the efficient dissemination of data while retaining the confidentiality of the patients/individuals concerned. We conclude that a balance of restriction and access is needed allowing linkage of multiple datasets without disclosure, enabling researchers to gather the necessary evidence supporting policy changes or complex environmental and behavioural health interventions.
School of Population Health, The University of Auckland, Private Bag 92019, Wellesley Street, Auckland 1142, New Zealand. Electronic address: d.exeter@auckland.ac.nz.
Daniel John
DJ
Exeter
Centre for Health Information Research and Evaluation, Swansea University, Singleton Park SA2 9PP, United Kingdom.
Sarah
S
Rodgers
Department of Geography, College of Life & Environmental Sciences, University of Exeter, Amory Building, Rennes Drive, Exeter EX4 4RJ, United Kingdom; European Centre for Environment and Human Health, University of Exeter Medical School, Knowledge Spa, Royal Cornwall Hospital, Truro TR1 3HD, United Kingdom.
Clive Eric
CE
Sabel
D022126:Access to Information / Q000331:legislation & jurisprudence; D003219:Confidentiality; D004813:Epidemiology; D040362:Geographic Information Systems; D005843:Geography; D006801:Humans; D033181:Information Dissemination; D020407:Internet; D011153:Population; D010818:Practice Patterns, Physicians' / Q000458:organization & administration / Q000706:statistics & numerical data*; D006113:United Kingdom; D014481:United States
Access; Confidentiality; Data collection; Medical record linkage; Privacy; Web 2.0