Is AIDS database worth it?

When the HIV Information Infrastructure Program (HIIP) was initiated three and a half years ago, its goal was to establish an electronic database that would provide information to people with HIV, their doctors and researchers.

Set up by the Ontario HIV Treatment Network the database would allow primary care physicians to receive the most current information possible on new treatments and drug reactions. The design would allow doctors to input a patient’s drug history, personal health information and lab test results. Using a secure electronic communication link, information collected could be accessed by other doctors and, with identifying information removed, by HIV researchers.

But since the project was launched in 1998, it seems to have lost its way. Despite an annual budget of $3-million, adding up to about $12-million so far, it is still at least a year from full implementation.

That’s a big chunk of the Ontario HIV Treatment Network’s annual budget of $8-million, provided by the Ontario Ministry Of Health’s AIDS bureau. (The rest of the non-profit’s budget is put toward policy development and research on AIDS treatment issues.)

“Reviewing the focus group results, it became apparent to me that there was not a clear mandate to proceed with this,” says Stewart Melanson. He’s a doctoral candidate in strategic management at the University Of Toronto and has watched the project since he unsuccessfully interviewed for the position of project director in the fall of 1999.

“There were grave concerns about spending this kind of money on this kind of project. When I read the executive summary, it seemed to me to be a serious distortion of the results of the focus groups in that the executive summary gave the impression of a clear mandate to proceed.”

Melanson is talking about a focus group report, published in 1998 by the HIV Health Evaluation Unit. It looked at whether there was support for the project, shortly after it had been launched.

There is “inequitable access to services and concerns that a lot of money is being spent on an information system when more basic services for HIV/AIDS are needed,” reads the report.

But that’s not the message put forward by the project’s promoters.

“The response to the project, from stakeholders, was a ‘show us’ one,” says Edward McDonnell. Principal partner of a private consulting firm, McDonnell has been with the HIIP as program manager for two years – on a consultant basis.

The idea for HIIP came out of the HIV Ontario Observational Database (HOOD). HOOD collected data on 3,500 HIV-positive participants. It was 7,500 hours of data collection – a lot to manage without an electronic system.

“The problem HIV providers have is the amount of paper and time required,” says Dr Ahmed Bayoumi, a physician and part-time director of science for the HIIP.

While there are precedents for intensive, high-tech information retrieval, there has never been anything on so grand a scale as the envisaged HIIP. The US-based Kaiser Permanente, for example, has an extensive database that follows patients. Unlike the Canadian system, though, these patients see particular physicians only and have all their healthcare needs attended to at the same site – the personal information isn’t shuffled among different doctors and clinics.

As well, the Kaiser Permanente model is an anomaly: owned and operated by a west coast engineering firm, it has a 60-year history of tracking patients.

“The health sector is behind other sectors with information technology,” says McDonnell.

Patricia Balogh, executive director of the Ontario HIV Treatment Network, says it will be tough for outside researchers to get access to the database. They’ll have to submit a proposal which will be submitted to “rigorous protocol.” She says it’s not their intention to sell the data to commercial interests like pharmaceutical companies, which would love to have such data.

“At this point there is no commercial involvement,” she says. “And there is no indication that there will be.”

HIIP has two components. The Clinical Management System – that assists physicians in establishing an electronic health record and manage information needs for patients – is currently in testing at the University Of Ottawa. However, the real meat and potatoes of the project, the Central Research Database – that allows doctors, researchers and patients access to the latest information on HIV care – is still only being tested internally and has not been hooked up with the management system.

“Given the scope of the project and the needs of all the stakeholder groups, including people with HIV, it is taking time to implement the project,” Balogh says. “It is taking time to implement the project. Although the timelines may be extended a little bit, it’s our intention to do a super job, an excellent job, a quality job, yes, a quality job.”

Balogh says it’s her hope to have the province’s 13 HIV/AIDS clinics and 125 primary care doctors hooked up to the system within “the next year to 18 months.”

Aside from the slow pace of work, there are other criticisms of HIIP. Some say doctors won’t have the time to use it properly, resulting in inaccurate or incomplete data.

“My primary concern with the original HIIP proposal was that it would not work so long as the majority of HIV care was provided by physicians with mixed practices – both HIV negative and HIV positive patients,” says Robert Troop, a data and healthcare analyst currently with CHAMP (Canadian HIV/AIDS Mentorship Program for doctors). “In these practices, doctors would have to keep two sets of records, their own and the records for the HIV database. It seemed unlikely that we could convince busy physicians to increase their workload for primarily research reasons.”

John Goodwin is a former Ontario HIV Treatment Network administrative assistant to Balogh. He says the project is a good idea, but he worries about built-in inefficiencies and lack of accountability due to leadership problems.

“The OHTN hires people contractually but the people morph into employees,” Goodwin says. “Suddenly, they have an office and are supervised by another employee. It is hard to be accountable when there is no boundary between consultant and employee.

“Think of any private company in the private sector that needs a CEO. If there is a vacancy, they aren’t going to be searching for two years. I think the OHTN failed in their attempt to fulfill their obligations to the community in its broadest sense.”