Healthcare IT: What do patients want?

Complete access to their own health information, for one thing, and a truly interoperable EHR will have to provide itAs the provinces and territories work to develop interoperable electronic health records (iEHRs), the challenges have centred on technology integration and caregiver access. Sadly, the patient is often lost in the shuffle. Yet no iEHR is truly interoperable without complete patient access, and even control.“Some hospitals don’t understand their legal obligations,” says Sam Marafioti, chief information officer at Sunnybrook Health Sciences Centre in Toronto.Unlike many CIOs, Marafioti is clear in asserting that medical records are the property of the individual, and that technology can be a positive force for patient empowerment. In fact, it was under his watch that Sunnybrook created MyChart, an electronic continuity-of-care record system for patients that was recently acquired by Telus Corp.“It was developed starting in 2006 in terms of chronic disease management and continuity of care as part of our innovation mandate,” says Marafioti. “It started with osteoporosis, and now is across all clinical areas.”Specifically, Marafioti says MyChart helps people trying to manage their way through difficult illnesses. “It can involve patients themselves in terms of the design of their record, and can be relevant for health education in areas such as breast cancer. At Sunnybrook it’s available to all patients as they need it — they sign on using the MyChart icon at www.sunnybrook.ca.”How far should patients be involved?Patient access to MyChart is a taste of things to come, yet many jurisdictions are reluctant to involve patients too closely. For them, technology enables patients primarily in terms of education, and secondarily for cost reduction by promoting self-care. For example, in 2008, Alberta Netcare was enhanced with the integration of chronic disease management systems and the start of the implementation of a shared health record. Sounds impressive, yet now the Alberta Netcare EHR is a client-centric system that’s focused on access by health service providers — there’s no mechanism for direct patient access to their records.And what are the plans? According to Alberta Netcare, “A public web portal that allows Albertans to access trusted information about health, nutrition and disease prevention will be available in 2010/11.” Unfortunately, this sounds like more of an information push than a truly collaborative iEHR with patient empowerment in mind.The same is true in smaller jurisdictions. Nova Scotia, for instance, has nine health authorities, eight of which are lined up with the same technologies to support the provincial iEHR (the ninth, Halifax’s Capital Health, has a cluster of legacy systems).“What this has allowed us to do is to create an environment in Nova Scotia where an EHR can be developed in a sustainable way, and more quickly than in other jurisdictions where there’s a mixed-bag environment,” says Sandra Cascadden, CIO at Nova Scotia’s Department of Health.It’s true that Nova Scotia is making headway on a truly interoperable EHR, and that the province benefits from solid broadband infrastructure, but Cascadden is aware that when it comes to patient empowerment, there’s still a long way to go.“At present the physicians are the custodians of the information, and the patient doesn’t have access,” she says. “We have a patient portal on the radar for personal health records — some of it could start with educational information.”Like it or not, there’s a sea change comingCascadden knows that an educational approach, though helpful, is still inadequate as a response to the sea change that’s coming as patients demand access to their records.“Patient access makes a lot of people nervous,” she says, “but we know we’re going to have to give people access to their own diagnostics. People will start using the Google or Microsoft health vaults, and they’re going to call us for their records. We’re working on it, because we know that call will come.”Nova Scotia and Alberta might do well to go with something that’s already proven, like MyChart. Through MyChart’s website, patients can set up a health record and then manage and share their health information with multiple care providers, as well as access test results and scheduling, maintain medication history and request electronic prescription refills.“With this foundation, we can move forward and seek opportunities outside the province,” says Barry Rivelis, vice-president of vertical marketing for healthcare at Telus. “And the exciting part is that once the data is integrated, we can take MyChart’s capabilities and extend it through a smart phone.”Given that Telus can host the solution, MyChart might just be the answer provinces and territories will need when the phone starts ringing and people ask how they can access and manage their own health information.Tim Wilson (twilson14@cogeco.ca) is a technology analyst, journalist and frequent contributor to the IT press. His clients include leading research firms and Fortune 500 vendors.

Healthcare IT: What do patients want?

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