Shared access for improved health care
Kathryn Brohman once had to take her nine-month-old daughter to a hospital in London, Ontario, where doctors examined the child and ordered a biopsy of her esophagus. A few weeks later, mother and baby found themselves at a hospital in Toronto. Again, doctors ordered a biopsy of the child’s esophagus.
“But she just had that done!” protested Brohman. “Can’t you just use the results of the biopsy they did in London?”
The answer was no. They said they didn’t have access to the records. They did a second biopsy.
Since that upsetting episode, Brohman, a professor at the Queen’s Smith School of Business, has been working to figure out a way for patient information to be more easily shared among medical professionals. While such data sharing already happens, of course, it is hard to do on a system-wide scale. Provinces have different health-care databases. Hospitals and family physicians use different types of electronic medical records (EMR). The data are often in different formats, and all are protected by strict privacy policies and laws.
On top of that, medical professionals are rightly concerned that if data are shared too widely, they may be misused, misinterpreted or fall into the wrong hands.
“Because of that, our health-care system is inundated with increased costs and data redundancies, straight down to the same X-ray being done multiple times,” says Brohman. “Nobody’s going to share that X-ray or ultrasound image. It’s easier for the hospital to just do it again.”
But what if there was a patient-centric health record that could be made available to anyone – the patient and their family, doctors, nurses, administrators, specialists – who needed it?
Answering this question is the focus of Brohman’s current work. She’s the co-principal investigator of a new research initiative called Healthcare Systems Leadership, a nonprofit research team of health-care providers and academics from across Canada that hope to streamline collaboration and information exchange in Canadian health care. In one project, she is working with the Health Quality Innovation Collaborative (HQIC), the developer of an online medical application called Synapse. Synapse is a social network, similar to Facebook, except it’s meant to be used only by patients, their family members and their various health-care providers. It is a platform to upload and store medical information such as prescriptions, referrals and so on, so that the patient’s various “friends” can access it if necessary. The system is designed to allow members of this “circle of care” to work together, using the same information, in service of a patient’s health-care needs.
While the technical part of Synapse is relatively straightforward, much needs to happen at the broader policy level to make it a viable private or public sector product. Specifically, privacy laws at all levels would need to be revised to explicitly make patients the owners of their medical information and compel doctors to provide it to them in a standardized format (such as a PDF) if the patient requests it. If patients own their information, they are free to share it with whomever they like – which is the idea behind Synapse.
“If I share my profile with somebody, that’s my choice,” says Brohman.
Although Brohman admits that the privacy policy hurdles are considerable, the potential benefits of Synapse, or something like it, are huge. Since patients’ information would be easy to access, millions of health-care dollars could be saved simply through the improved efficiencies. More importantly, patients would receive superior, better-coordinated care.
“It gets really powerful when you can actually think about Synapse as the personal health record of a patient,” says Brohman. “My research asks, ‘What needs to change in order to get there?’”
