When you see different doctors, is anyone keeping track of your health? Often no, new report says
Death, illness and other harm can result when flow of Canadians' health information stops
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When you see a specialist or get test results, it might be tempting to think that, somewhere, a medical professional is connecting the dots.
But a new report by an Alberta group found that sharing health information between professionals is often fragmented in Canada — increasing the likelihood of medical errors and harm, the report suggests.
"In most places in Canada, health information does not flow digitally from one clinic or hospital or health authority to another," said Dr. Ewan Affleck, the report's lead author and a family doctor who works in Edmonton and Northwest Territories.
"It just simply stops."
This means that when a patient is referred to an orthopedic surgeon by their family doctor, for example, the specialist may not have access to prior X-rays or a record of the patient's worsening knee pain.
Something similar happened to mechanical engineer Greg Price, who at just 31 died in 2012 following complications of testicular cancer surgery — a procedure that was delayed because his medical information wasn't shared efficiently.
Affleck called Price's case — the subject of a 2013 report and 2018 short film — a documented death ascribed in part to health information mismanagement. But the problem happens far more frequently than realized and it hasn't been studied or measured properly, he said.
"If we do not design and use health data properly this can lead to harm to people, communities and the health-care system," including illness and death as well as inefficiencies and health provider burnout, he said.
The report, Data disarray, published by the Alberta Virtual Care Coordinating Body, calls for a reimagining of governance and public policy for health data in Canada to catch up to countries like Denmark and the U.S., where legislation to promote coherent use of health data came in decades ago.
Falling through the cracks
Price, a pilot, engineer, baseball player and uncle, had seen a doctor for a routine physical, had lab tests, been to a walk-in clinic with two different physicians, and was waiting to see a general surgeon before — more than a year after the first appointment — the cancer was found and he was sent for urgent surgery.
If two pieces of information — back pain and thickening of the epididymis, a duct connected to the testicle — had been accessible to Price's health-care team, his case most likely would have been identified as potential testicular cancer before it spread, his sister Teri Price said, based on reports into the death.
But since these facts were kept in separate silos at different clinics, the connection wasn't made until significantly later than it could've been, said Price, a patient safety advocate in Calgary and executive director of Greg's Wings project, a non-profit in her brother's honour.
"It can be frustrating when you have to constantly repeat yourself and when you think that the doctors should be looking at the information that you just shared with somebody else," said Price.
Teri Price and her family commissioned and paid for a short film about Greg's care, led by Heartland director Dean Bennet. At screenings of Falling Through the Cracks: Greg's Story, she says the story often sparks discussion of how health information systems in Canada aren't set up for success.
"Information sharing or communication is almost always an issue in the stories that we hear back both from the patient and family and the health-care workforce perspectives," she said.
Price said at screenings, viewers may at first think things would be better today, thanks to investments in information technology in Alberta, which leads other provinces, according to the Canadian Institute for Health Information's October map of physicians sharing patient information electronically.
Not necessarily, she said. It depends whether information from various tests and clinics are stored in Alberta Health Services' hospital IT system.
"The dream of having a patient's care team having access to the information they need still isn't the case even now," Price said.
Still communicating by fax
While Greg Price died more than a decade ago, the report suggests little has improved nationwide.
Dr. Iris Gorfinkel, a family physician and clinical researcher in Toronto, calls the lack of health information systems that can talk to each other a "long-standing problem."
"Team care would mean interoperability between me, the physiotherapist, the pharmacist, potentially a nurse practitioner," said Gorfinkel, who previously wrote a commentary about why patients should have access to their own medical records.
While communication about a patient between the team members is best in real-time it's often impossible. Instead health-care providers share medical information by fax because software systems between clinics and hospitals often don't sync.
Affleck said if a doctor or nurse practitioner doesn't know what medications someone takes, their lab reports, diagnostic imaging, family history, immunization status and other information, then "the likelihood of you making an error increases." He's seen it happen first-hand throughout his career.
Often when a Canadian interacts with the health care system, such as getting a blood test or cancer screening, they're asked who their family doctor is.
"It's a natural assumption … to be like, 'Oh, OK, so they're going to share this report or information back with my family doctor,'" Price said. "But we know that it's hit or miss whether or not your family doctor is going to have access to that information."
Price recalled one allied health professional in private practice who was surprised to hear family physicians need to hire a full-time staffer just to handle all the faxes coming into the office.
"We have to be able to have these conversations about what's working, what's not working, and being committed to the path forward," said Price.
Federal bill aims to improve information flow
Solutions do exist. In Denmark, for example, citizens can find information on treatments, wait lists and communicate directly with healthcare services through an e-Health portal.
Part of Canada's efforts includes a federal bill. In June, Health Minister Mark Holland introduced Bill C 72, the Connected Care for Canadians Act, to enable patients to securely access their personal health information and allow health-care providers to share it, such as between specialists at hospitals and doctors or pharmacists working in the community.
It also would require technology companies to make their health information software compatible with each other's so that a health-care provider working on one system can share information with another working on a different system.
The bill, which is at second reading in the House of Commons, aims to reduce harm to patients caused by unnecessary or duplicated tests, long wait times and hospital stays, as well as medical errors.
Canadians move freely between towns, cities and provinces. But if their personal health information isn't portable, universal, accessible or comprehensive then the quality of care diminishes. "That is a huge problem," Affleck said.
However, he said there's now a "groundswell of interest" in getting health information to flow freely across provincial and territorial borders. The Canadian Medical Association said nationwide connectivity will improve patient outcomes and their health-care experience.
"There's no technical limitations," Affleck said. "The limitations to doing this are really ones of governance and public policy."
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