Open cancer data

LAURENT PROUL
PRESIDENT AND CEO OF PROCURE, AND FOUR OTHER SIGNATORIES WORKING AGAINST CANCER*

As charities in the field of cancer in Quebec, we want to add our voice to those who demand that cancer data be made public.

Last spring, we conducted a survey of 9,736 patients or parents of children living with cancer to find out their opinion on better access to health data and their medical history. Among those who have experienced the obstacle course to obtain their medical records, better sharing of data is desirable. For the others, who were forced to repeat a series of examinations, tests and biopsies because the results obtained were inaccessible, there is a very strong support for sharing health data. For instance:

• 97% believe it is important to have access to health information;
• 89% are in favor of their health information being shared with those in the health sector who provide them with care;
• 90% are in favor of their health information being shared for medical research purposes without any possibility of identifying them.

Often, the lack of communication between the various establishments and specialists as well as ad nauseam administrative mess mean that the patient has to multiply the steps in order to have access to his medical file, which wastes precious time for the patients, to whom every day counts. In addition, the lack of access to cancer data is delaying research projects.

Regarding access to data and statistics for research, Quebec continues, year after year, to lag significantly behind other provinces.

During this election period and at the dawn of a major digital transformation in health, we want political parties to commit to closing the huge gap between Quebec and the other provinces with regard to the Quebec Cancer Registry. We must link up with the rest of Canada, the United States and Europe by participating in personalized health projects to facilitate the care trajectory of all Quebecers and promote the advancement of cancer research.

Both for the patient and for researchers in the field of cancer, it is important for Quebec to rely on the data it already has in patient files, in order to facilitate treatment and to invest in the right places in research. Currently, it is a real black box. Health data is secretly kept, while access to it is essential for the quality of life of patients and for research.

We recommend building on the Connect Care model, which has been in place in Alberta since 2019. This initiative provides healthcare professionals with a central point of access for comprehensive and up-to-date patient information. Patients have better access to their own information and easier communication with healthcare professionals. Basically, both the healthcare team and the patients have the most up-to-date information possible.

* Co-signatories: Marco Décelles, Quebec Cancer Foundation; Juli Meilleur, Leucan; Diego Mena, Canadian Cancer Society; Manon Pepin, Cancer Research Society