Health-care providers to empower patients with data

A Toronto hospital is preparing a pilot project that would give patients access to their records online and help them participate more fully in their own treatment.

Sunnybrook and Women’s College Health Sciences Centre

will work with 100 women currently receiving treatment for osteoporosis. These women will have access to their health-care profiles via a secure portal developed by the hospital. The information in these records will contain any treatment they have received at Sunnybrook, as well as pertinent information from other health-care providers like a family doctor or pharmacist.

“”It’s not going to work if this is just about Sunnybrook’s information,”” said Sam Marafioti, vice-president e-health at the hospital. “”That’s why the focus of this has to be: what are all the encounters that this particular patient may have within the health system.””

These encounters will include the so-called “”circle of care”” providers, as described in Ontario’s Health Information Protection Act, Bill 31.

Marafioti said that Sunnybrook has been working with the Canadian Association of Chain Drug Stores — which represents organizations like Shopper’s Drug Mart, Wal-Mart and PharmaPlus — to gather medication information into a common portal.

Using the portals, patients will be able to view their treatment to date, as well as take a more active role in directing future treatment by scheduling appointments, viewing test results and other information pertinent to their condition, said Marafioti. Patients would also be able to manage who is able to view their information via the portal.

Sunnybrook is getting research and consulting expertise from the Health Record Network, an organization that was established almost a year ago by Duke University. HRN is working with American health-care facilities, including Duke’s own medical centre, to push electronic health records into the public arena.

“”There’s been a great deal of discussion about the use of the information technology and the need to manage information and health care more efficiently, but much of it has been focused on the clinical side. The pilot program that we’re looking at with Sunnybrook is to focus on the consumer side,”” said Brian Baum, CEO of HRN.

Baum said the ultimate goal with projects like Sunnybrook is to provide patients with anywhere/anytime access to their health records. He likened it to personal banking where users are able to manage their account information from practically any bank machine in the world.

Gail Crook, executive director of the Canadian Health Information Management Association, said that this vision is laudable but will face obstacles. “”A lot of health-care people believe that the patient is part of the process and should understand what’s in their record. However, to date, it’s been very limited as to what has been shared.””

Mental health-care providers may not want patients to view all their information, for instance. Also, physicians may have concerns about the limitations of privacy laws and what they may be exposing themselves to by uploading information to a portal, she said. “”Most hospitals are not ready for that. Maybe Sunnybrook is ahead of the game.””

Baum said an increase in consumer interest in electronic health records will help iron out such problems — both technical and social — over time. “”We’ve got to begin to change the culture of health care so that consumers become more active participants in managing their own health with their physicians,”” he said. “”Until we get this infrastructure in place, we are really limiting our ability to provide the best health care.””

The hospital chose osteoporosis patients as the first group to utilize the portal since their condition is chronic and will require lifetime management. The Sunnybrook pilot program should be up and running by the fall of this year.

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