Mystery Surrounding the Phenomena of ‘e-health’ Puts Data in Focus
Mystery Surrounding the Phenomena of ‘e-health’ Puts Data in Focus
July/August Edition, 2007: >Research into all aspects of health depends on data. While the data is often in abundance, a lack of access and synergy between differing data repositories and organisations can slow down the progress of healthcare, preventing the full potential of health research. But according to the e-Health Research Centre, data access is a puzzle that may soon be solved after developing a tool to counteract the missing piece.
When a patient suffers a stroke, they often have a heart specialist, a brain specialist, a rehabilitation specialist and potentially a range of nurses along the way all asking the same questions. It’s a stagnant and repetitive exchange of information working to meet quality assurance, privacy and disparate database challenges.
For hospitals finding a better and more efficient way to handle these situations, overcoming the privacy, security and quality issues associated with patient data is difficult. Hospitals theoretically have a range of options; they can buy data warehousing and data repository tools and spend the time working on the data before moving it into the required format, or they could start again, and create differing data sets by manually restructuring.
“Or they can do what we do,” says Anthony Maeder, research director of the CSIRO’s e-Health Research Centre. “Which is provide clever software which asks questions of separate databases and controls how the results of those queries are amalgamated.”
The clever tool Maeder is referring to is their Health Data Integration (HDI) software which links data repositories, allowing private and secure access to a range of different databases. “We’ve built a system for interrogating remote databases rather than moving them into the one space,” he says.
In health research, it’s not necessarily about mixing up the information on a specific patient to get better results, but rather a whole collection of facts and figures from many conditions. Different departments, hospitals and organisations often collect their own research data on a specific health issue. But it’s not until data in isolation can break through the privacy and quality assurance problems to regroup with similar data that answers to health issues can be found.
By allowing access to multiple sources of information, the CSIRO says they are enabling research and analysis on a broader scale than what would be possible through individual data repositories alone. It’s the opportunity to link Australia’s vast network of health information to find valuable answers to vital health questions.
However there is sophistication in what the CSIRO is developing, that could easily be lost by simply calling it a ‘virtual data repository’. “It’s important people don’t think of this as just another warehousing approach,” says Maeder. “What we do is read the queries rather than amalgamating the data.”
With their HDI tool, the CSIRO is pulling traditionally unconnected databases together. These might be from government, hospitals, GPs or allied health systems or could exist between the differeing information and reporting systems.
And while linking databases is nothing new, the core of HDI’s solution rests in its ability to maintain the privacy of patients by using encrypted demographic data. “By distributing queries to the database, we also leave with the custodians the power to control access to their own data. Whereas in a warehouse you hand the data over.”
The HDI software could provide a missing link in the e-health chain, but e-health itself still presents its own set of problems. There are a range of impediments to linking data that don’t just extend from diverse and independent databases. There is also the problem of complex data formats, the sophistication of aggregation methods and of course the patient security and privacy concerns.
From the outset, it’s often the quality of data that can provide the problem. “Sometimes it’s not correctly entered and there are errors, or otherwise it’s the different ways of entering in the details,’ says Maeder. “There are also many different software databases and vendor packages being developed.”
There is also the legislative impediment, designed to assure the security of health data and individual privacy protection, yet ultimately hosting its own series of challenges. “Unfortunately there are different laws in different states and complying with all jurisdictional legal circumstances is very hard. It’s usually easier just to comply with your own state or specific company,” says Maeder.
Maeder believes he’s involved in an interested experiment. Stationed in Brisbane, he’s part of a wider joint effort between the Queensland Government and CSIRO to turn technical know-how into practicality and contribute to the knowledge economy via health. The idea is not just about research, but to provide research that is actually carried into practice. For Maeder that’s how research agencies can remain relevant in a world where many projects are unsustainable after their initial start-up.
“When we talk about e-health, there is a lot of mystery that surrounds this area,” he says. “We want to actually make an impact, an improvement in the way healthcare works by giving better information and better quality to clinicians and decision makers.”
While most of us consider the ultimate goal of ‘e-health’ to be one which pulls in the disparate systems in states and hospitals to create seamless (and private) patient information access across the country, the actual researchers chasing these goals see a different outcome. “For most people, they picture this big-game, but as researchers, that’s just a step a long the way. For us, it’s more about what all this can lead to,” says Maeder.
Judging by some of the projects coming out of the e-heath research centre such as the HDI software tool, it seems the goal of the e-health ideal is already producing some beneficial work.
Another prominent example from the e-Health Research Centre could soon see a ‘cancer staging’ project implemented in a major hospital. “Cancer staging occurs when doctor get together to decide the stage of cancer. We’ve tried automating that process and we can get comparable results to what the human experts come up with,” says Maeder. “This had a huge impact because what you find is that when doctors get together to have meeting over these patients, they can only get through a limited amount of cases. But a computer can do hundreds of these an hour.”
While e-health projects are in abundance across Australia, there are few that are actually being put into practice. Finding the means to assist health research is valuable but for patients in a critical situation, the opportunity to pull in as much information as possible for medics to effectively do their jobs could provide the link between life and death.