Concerns over the privacy of patients could be hampering efforts to spot disease clusters

Sep 12 2005

Concerns over the privacy of patients could be hampering efforts to spot disease clusters and monitor the health effects of environmental pollution, according to researchers in the latest edition of the Journal of Biomedical Informatics.

Data made available to research groups investigating everything from cancer clusters to the risk of living near to hazardous waste sites is often restricted, altered or aggregated in order to protect the identity of individual patients.

But researchers say that these measures often make it impossible for them to carry out accurate geographical analyses of public health concerns, and may even result in misleading information being used in healthcare decisions.

They suggest that new technology which uses software "agents" to explore data could provide healthcare professionals with more accurate and meaningful information without risking patients' identities being revealed.

Agents are advanced software programmes that can be set a specific task but then given the autonomy to set goals and carry out the operations necessary to achieve them.

By constructing virtual institutions in which agents can act, collaborating organisations can make raw data available for research without compromising the security of the information.

"It is becoming increasingly clear that certain measures to protect individual privacy can destroy the information needed for geographical analyses, making it impossible to address many important public health concerns," said Dr Maged Boulos, from the School for Health at the University of Bath.

"Some of the solutions used to preserve confidentiality, such as centralising information to a single point in a town or aggregating data to cover the whole of an area, either lack the flexibility healthcare researchers need to get the information they need, or else actually obscure the results.

"This degrades the ability of public health researchers to identify, for example, the risk of exposure to lead associated with urban highways or clusters of cancer cases.

"Such widespread concerns can only be addressed using micro data and access to this often involves lengthy and cumbersome procedures through review boards and committees for approval, and sometimes it is just not possible."

Dr Boulos, together with colleagues from the Department of Computer Science at the University of Bath and the University of Iowa, suggests that new agent software may be able to overcome some of these problems.

Software agents are programmes that can respond to changes in their environment, generate and attempt to achieve goals, and have the capacity to interact with other agents and even co-operate.

This means that agents could be sent to the original data repository in order to carry out the analysis there, and then send back an aggregate report that does not reveal individual identities. "Software agents could provide flexible but controlled access to unmodified confidential data, and return only results that do not expose any person-identifiable details," said Dr Boulos.

"The use of software agents is not a simple as it sounds, and also carries with it its own security risks, which must be properly addressed.

"Mechanisms need to be introduced that, for example, digitally sign and authenticate genuine agents and their transactions, and prevent 'Trojan horse'-like attacks by fake or rogue agents.

"These mechanisms could include the creation of virtual institutions to insulate host organisations from agents and minimise leakage by limiting access to only the necessary data."

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