Dr. Claire Bombardier envisions a day when her patients can perform self-assessments of their disease and measure their own progress with the help of an Internet portal.

For the last two years, the medicine and rheumatology division director at the University

of Toronto has been hard at work on a homemade PHP-based solution that will eventually turn her vision into a reality.

Bombardier outlined her experience in implementing the “”eRheum project”” during a recent speaking engagement at the Ontario Children’s Hospital of Eastern Ontario.

The hope is that the eRheum portal will soon go live on the Internet so patients with rheumatoid arthritis can log on to the system, access their own record, and update it by answering questions on their perception of pain and ability to function in daily life. This data is automatically compared to information entered on previous visits. The portal then produces a report that measures a patient’s long-term progress, allowing physicians to make more informed treatment decisions.

Typically, physicians are so busy that they only have time to take a quick glance at a patient’s paper record before seeing them, said Bombardier. It’s really not enough for the physician to get a big picture snapshot of the patient’s history. Eventually, the portal will be able to produce a comprehensible graph that gives a physician what they need.

“”By introducing information technology, suddenly there’s a wider trend we can look at that might otherwise be missed. (Such snapshots) can lead to noticing a need for treatment two or three years sooner,”” said Bombardier.

The system is also advantageous because a physician normally doesn’t have enough time to enter such detailed data on patients, said Bombardier. The portal puts the burden of data entry on the patient in a touch-screen format that Bombardier said patient trial groups have found easy to use.

The current phase requires a “”real-life”” implementation following the migration of all data from trial groups’ workstations to the Internet. Yet, there are many hurdles in doing so, said Bombardier.

For months, she and her team has been appealing to Mount Sinai Hospital’s IT administration and ethics board in Toronto. IT staff are understandably concerned over the security of such an undertaking, especially if patients are accessing records remotely, said Bombardier.

Yet, the eRheum team is trying to quell such concerns by using secure sockets layer encryption, the same type of technology used by major banks.

Achieving buy-in from patients has been a challenge as well, especially in the wake of heightened privacy rules such as the Personal Information Protection and Electronic Documents Act. Since the enactment of PIPEDA at the beginning of this year. Bombardier has had to revamp old patient consent forms.

As well, ensuring a universal standard of data collection and codes is also a challenge since there are so many standards used by different people in the field, said Bombardier.

But these potential roadblocks haven’t deterred Dr. Bombardier’s team. For now, Mount Sinai’s administration has agreed to use the technology in-house, separate of the Web. Meanwhile, Toronto’s Sunnybrook Hospital is piloting the system and it will soon be piloted by the Toronto Western Hospital and some community care centres.

The hope is that the portal concept will translate to other diseases treated by physicians outside of the rheumatoid arthritis field, Bombardier said.

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