Quebec patients can view the results of their samples and medical imaging tests in the Carnet Santé Québec. Does this platform seem appropriate to you?
The Carnet Santé Québec provides access to laboratory results after 30 days. When you are a patient with a chronic or acute illness, 30 days is too late. If we want to give patients something useful to help them, it has to be in real time. This is one of the messages conveyed at the Laurie Hendren Symposium on “patient in the loop” data. [qui avait lieu mercredi dernier à l’IR-CUSM].
At the MUHC, oncology patients have access to their results in real time thanks to Opalan application developed by the IR-CUSM and launched in 2018. What did you notice?
We asked patients who use it if having access to their lab results in real time changed their anxiety levels. Sixty-one percent said they were less anxious when they had access to their results in real time. Thirty-seven percent said it made no difference. Two percent said their anxiety increased.
So does this access seem beneficial to you?
Yes. Patients tell us that the worst part of the blood test experience is waiting for the results. Once they have the data, they can think about what they are going to do. Often, patients who have cancer are experts on their cancer.
But don’t hypochondriac patients contact their doctors more?
The answer is “yes, but.” Yes, hypochondriac patients may be anxious and call their doctors to find out their test results. But these patients are already hypochondriacs. So they are already calling their doctors to ask if the results are available, what the results are, to schedule the next appointment, etc. Studies elsewhere in the world have shown that giving patients real-time access to their test results does not increase phone calls.
Are there any other uses for this real-time access?
Patients tell us they arrive at their appointment with their data in hand and are better prepared to ask questions of their doctors. When a patient gets bad news in the doctor’s office, they are in shock and may not be able to ask their questions.
Access to real-time results also allows patients to play a more active role in their health. Of course, not all patients want to play this role. But there are patients who want to do it and they don’t have access to their data currently.
Doctors will have to change their approach with patients…
It is possible to help patients understand in advance what the possible outcomes will be and what their options will be if the outcome is positive or negative. This requires a change in the way we treat patients. We need to start viewing patients as partners in their own care. After all, the patient is the primary caregiver on their health care team and the person who has the greatest interest in their own care.
Where does Quebec stand in terms of access to real-time data compared to other states?
Quebec is really behind. Apart from Opalthere is no system in the Quebec hospital network that offers patients real-time access to their data. In the United States, there is a law, the 21st Century Cures Actwhich requires institutions to give patients direct and immediate access to their medical data. A violation carries a fine of up to $1 million.
Here in Canada, New Brunswick has a central patient access system. In Ontario, many hospitals have their own portal or use Epic Systems’ portal, MyChart. Quebecers will have to wait several more years before having real-time access to their data. It will take time to install Epic [qui a décroché le contrat d’implantation du dossier santé numérique] and make it operational across Quebec.
Questions and answers have been edited for brevity.