September 15, 2022
89% of Quebecers are in favor of cancer data sharing
As charitable organizations in the field of cancer, we want to join our voice with those asking that available cancer data be made public.
Last spring, we surveyed 9,736 cancer patients or parents of children living with cancer to seek out their opinion regarding improved access to health data and their personal medical history. Those who had undertaken the daunting if not nearly impossible task of obtaining their medical record confirmed interest in such data sharing optimization in a positive light. Due to exam result inaccessibility, other survey participants who had to undergo countless exams, tests, and biopsies, were quite open to the sharing of health data as well. For example:
- 97% stated that it was important to have access to health information.
- 89% were in favor of having their health information shared with the healthcare professionals involved in their treatment.
- 90% were open to the idea of their health information being shared for medical research purposes, as long as they would remain anonymous.
Cancer: data at the heart of a modernized healthcare system
Patients who want access to their medical records often face countless obstacles, including a lack of communication between various specialists and institutions and multiple administrative snafus. These situations lead to extra delay and administrative processes while time is a precious ally for those who receive a cancer diagnosis. Also, a lack of access to cancer data contributes to the delay of cancer research projects.
The province’s political parties must make access to cancer data a priority
Quebec continues, each successive year, to lag significantly behind other Canadian provinces in access to data and statistics in support of research. In this election period and digital transformation of Quebec’s health sector, we encourage the province’s political parties to commit to addressing the vast gap between the Quebec Cancer Registry and similar databases in Canada’s other provinces. We must align our data practices with those of the rest of Canada, the United States, and Europe by participating in personalized healthcare initiatives that will facilitate access to healthcare for all Quebecers and promote cancer research advancement.
Existing data as a keystone
Quebec must make effective use of the existing data available in health records of cancer patients to facilitate treatment and allow targeted research funding : two objectives that would prove beneficial to both patients and scientists. Currently described as a black box, health data are confidentially stored, despite the importance of their accessibility and use to the quality of life of cancer patients and the efforts of researchers.
We encourage the Quebec government to consider a model such as Connect Care, a clinical information system introduced in Alberta in 2019. This initiative would result in healthcare professionals having access to a central portal with comprehensive and up-to-date patient information. Patients would also have better access to their information and benefit from improved communications with healthcare professionals. In other words, relevant and updated data would be available to both patients and the healthcare team.
Signatories:
Marco Décelles (Quebec Cancer Foundation)
Juli Meilleur (Leucan)
Manon Pepin (Cancer Research Society)
Diego Mena (Canadian Cancer Society)
Laurent Proulx (PROCURE)
