E-health experts have called for information management systems to "harvest" data from electronic health records for medical research.
According to Donald Mon of the American Health Information Management Association (AHIMA), "secondary use" of data by researchers could improve medicine, patient safety and public health.
While current e-health software was "rich in functionality", Mon said products tended to store information as "free-text" data that could be read by a human but not easily analysed by a machine.
He explained that researchers needed quality e-health data that could be analysed based on clinical results, quality indicators and any public or population health trends.
Data had to be in a "computable form" so that relevant information could be "harvested" from e-health records for researchers to test hypotheses or conduct ad hoc investigations.
"Some systems are capturing a text stream when they could easily have captured [that information] as a numeric value," said Mon, AHIMA's vice president of practice leadership.
"There is huge opportunity for software providers ... We hope to take these already rich products and make them better."
Harvard Medical School professor Ross Lazarus hoped to address this demand with an open source 'Electronic Support for Public Health' (ESP) project being tested by Ohio MetroHealth.
Funded in part by the US Centers for Disease Control and Prevention (CDC), ESP was an electronic system for reporting notifiable diseases like syphilis and gonorrhoea.
Current processes required clinicians to manually complete forms and fax non-identifiable data about these diseases to the CDC. Lazarus said ESP could improve accuracy and save healthcare providers time and money.
Additionally, electronic records could be more easily linked to other, relevant information - for example, about any treatments administered - so that authorities would have enough data to follow cases up.
"If you can get a hold of electronic patient records, and as long as they are reasonably complete, we really can add significant value," Lazarus said.
"We have much better sensitivity and specificity. We connect the dots much more easily and end up doing much better quality reporting, and it frees up smart people to do more interesting things."
Besides notifiable diseases, Lazarus said ESP could be used to manage vaccination records and other information that could be analysed to identify diabetes.
ESP was delivered on servers that were installed within a customer organisation's storage facilities, so it would fall within its security regime.
Lazarus said that although storing data could come with privacy risks, ESP reduced risks to individuals' privacy because electronic communications tended to be more secure than faxing.
"Think of what happens with a manual form: the doctor is supposed to fill out a form and fax that ... faxes are just a terrible way from a privacy point of view," he said.
"Our reports for notifiable disease are sent through a really secure system. So I think the privacy concerns are much greater for existing manual systems rather than electronic systems."
Privacy and e-health in Australia
With the ALP Government planning to spend $466.7 million over two years on establishing Individual Healthcare Identifiers (IHIs) and e-health records, the local demand for relevant IT systems could heat up.
BLICT e-health consultant Peter Croll, also of the Southern Cross University, said although IHI users and information managers should protect patient privacy, the Government was ultimately responsible for introducing legislation to ensure that e-health data was not misused.
"There is some work to be done to ensure ... legislation will do what's required to ensure that it's [e-health data] used only for its primary purpose and also successfully for secondary purposes where it's appropriate."
He called for privacy laws to be reviewed, suggesting clauses that would require any research that used IHIs to be approved by a human ethics committee before the project commenced.
Greater penalties should be imposed on those found to misuse e-health records, he said, and authorities should clarify which healthcare services were legitimate "primary uses" for the records.
"We do need to make sure access to that information is very controlled," he said, questioning if alternative medicine providers and personal fitness instructors should access their customers' records.
And while medical research was a legitimate "secondary use", Croll said there should be restrictions so that insurance providers, marketing companies and journalists could not access and misuse individuals' information.
"A professional medical researcher would be bound to say, "If I do across some information I shouldn't have, I wouldn't be revealing that information anyway'," he explained.
"The important thing is the health identifier bill doesn't change any of our privacy laws; what applied before applies now. The review of the privacy laws has to incorporate the fact that identifiers exist."