Politics
Ontarians still waiting for $54M online Diabetes Registry

Almost $1 billion had been spent over 10 years by two different governments on eHealth, without getting full value for those dollars

Credits: QMI AGENCY FILES

JONATHAN JENKINS | QMI AGENCY

TORONTO - Until recently, the casual visitor to eHealth Ontario's web site might have had the impression the province's long-awaited Diabetes Registry is online and operational.

"The implementation of the DR in the fall of 2011 is an important step toward achieving province-wide electronic health records (EHRs) for Ontarians," the website said, prior to a major overhaul launched at the end of June.

Which it would have been, had it been true.

"It's still pending," eHealth vice-president Rob Mitchell said of the registry.

"I wouldn't want to put a date on it. It's not going to go forward until it's entirely set up. We don't want to have it out in physicians' offices and not have it work.
"It's late."

Late is an understatement for the Diabetes Registry, a $54-million project back when it was first promised in April 2009 and intended to improve care for people with the chronic disease by monitoring their latest test results electronically, and sharing that information with all the different health care specialists who treat them.

It's hailed as a "key element" in Ontario's Chronic Disease Strategy, itself a part of the overall push to digitize health records in Ontario. The benefits are obvious - patient information quickly available to the health care provider who needs it, meaning better, cheaper care with fewer mistakes and delays.

But they've also been easier to imagine than realize. Auditor general Jim McCarter, in his clinical dissection of Ontario electronic health records woe in 2009, said $1 billion had been spent by over 10 years by two different governments, without getting full value for those dollars. He's since been more specific about the numbers, saying "hundreds of millions of dollars" were likely wasted.

In that 2009 report, McCarter documented four different deadlines - none met - for the Diabetes Registry, ending in fall 2010.

That was later pushed back yet again to fall 2011 but that deadline too came and went.

Mitchell said the registry is now in testing with CGI Consultants Inc., the vendor that won the contract to build the registry in August 2010, and that any questions about why it was delayed or when it would be complete should be directed to the company.

That's despite the fact the agreement between CGI and eHealth Ontario says eHealth has control over the disclosure of any information with respect to the project and that CGI can't talk about it publicly without the agency's approval.

"eHealth Ontario has a right to disclose or publish (including on web sites) this Project Agreement, any or all terms hereof, including any or all contractual submissions and other records kept in accordance with this

Project Agreement, any information related to the performance of (CGI)," the agreement states, adding eHealth has "sole discretion" on disclosure. It also says eHealth has to act "in accordance with the transparency and accountability principles of Ontario's Freedom of Information laws.

"It's their project, it's their contract. There's not much we can release about it," Carolyn Rouse, CGI spokeswoman said, adding it has certainly not been made clear to her that eHealth has cleared CGI to update the media on the registry.

The project agreement between eHealth and CGI - which is posted on the Infrastructure Ontario website - also makes clear CGi must file reports to eHealth on any failure to stick to the project schedule and detail what it's doing to get back on track.

eHealth has not responded to a request from QMI Agency to see any reports CGI has filed on the delay.
A spokesman said in an email that eHealth has a different interpretation of the agreement.

"Under the CGI contract any media disclosures must be agreed to by CGI," Sikin Samji-Clark said.

"Under the project agreement no monies will be paid to CGI until the diabetes registry is complete."

The goal of the registry is to track key indicators such as blood sugar and cholesterol levels, kidney function and eye exams for the estimated 1.1 million Ontarians with the disease, then link that information to all the health care providers who work with an individual patient.

It's part of a larger Chronic Disease Management System, meant to focus the province's push toward electronic health records on an area of great and growing need.

Older patients with chronic conditions are making up larger percentages of the population and managing their care better is expected to save the province hundreds of millions.

The silence from eHealth on the Diabetes Registry doesn't extend to its many other efforts to advance Ontario's health care system into the digital world.

Those efforts got a very poor review from auditor general Jim McCarter and opposition parties in 2009 but eHealth now insists it has put the lack of focus, over reliance on expensive consultants and expense problems behind it.

Mitchell for instance, is much more keen to talk about progress in moving diagnostic images - including X-rays, CT scans, MRI results and ultrasounds - between hospitals and doctors.

A particular success, he said was ENITS, the Emergency Neuro Image Transfer System. ENITS lets neurosurgeons view scans remotely of patients with head trauma and recommend treatment without having to transfer the patient to a neurosurgery centre.

Prior to ENITS, most head trauma patients required a transfer for doctors to figure out the best way to proceed. Now most don't and the savings were an estimated $50 million in the first two years of use.

Lab reports are now being moved electronically through the Ontario Laboratories Information System, an innovation that the Ottawa Hospital's Chief of Endocrinology and Metabolism Dr. Erin Keely says in a video on the revamped eHealth web site has eliminated the 20% loss rate for paper-based lab reports she used to deal with.

Moving big files such as X-rays and CT scans digitally requires a lot of expensive infrastructure, but it's not infrastructure every doctor or lab in the province necessarily needs a physical connection to.

That's a realization officials at eHealth were already coming to when McCarter zeroed in on the problem in 2009.

The auditor general noted it was proving to be an expensive waste of time extending fibre optic circuits to as many points as possible along the ONE Network system, essentially the information superhighway electronic health records would move along, through a variety of applications.

McCarter pointed out the circuits were getting installed but most were rarely used, a criticism eHealth took to heart and adjusted its sights accordingly.

Now instead of the 20,000 circuits it once planned to install, only about 600 are contemplated at large centres such as hospitals and data centres.

Most doctors' offices and care homes will work online through the internet and connect to the network through a portal to view lab reports and images.

It had been costing eHealth up to $72 million a year to keep the more than 4,000 circuits it once had installed running.

But as the circuits are pulled from where they don't need to be, costs are falling. Last year it was $57.4 million and that's expected to be $47 million in 2012.

And the use of PKI (public key infrastructure) certificates has fallen dramatically. McCarter found eHealth was spending $2.4 million for 150,000 PKIs but only making use of about 2,500 of them.

That number is now down to 10,000 at an annual cost of $110,000.

ONE Mail, an encrypted email system for health care workers that runs along the ONE Network backbone, is also growing.

The application had been plagued by "flaky infrastructure" that frequently failed, discouraging users from signing on.

But since eHealth reworked ONE Mail's transfer protocol, problems have largely cleared up and now about 45% of the health care sector is using it, officials said.

Overall, eHealth's Mitchell says the agency is well on the way to answering all of the auditor general's questions and implementing all of his recommendations.

Nearly 65% of community-based primary care physicians are now using electronic medical records, with about three-quarters of the province's 13 million people covered.

"There's not going to be a pivotal, anniversary moment where you push the plunger and hallelujah, we're there," Mitchell said of the 2015 goal of an electronic health record for the entire province.

"It's an incremental build and the program is expanding constantly.

"Every day is a tipping point. The kind of connectivity that we're working toward is transformative. It's constantly evolving."

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