According to a survey obtained exclusively by The press, the majority of Quebecers would be ready to share their health data to advance science. As required by Bill 19 presented to the National Assembly on Friday.
With this project, the Legault government intends in particular to facilitate and secure the transfer of personal information within the health and social services network. This includes researchers, to help them make discoveries faster, to improve care.
Quebec scientists have been calling for faster access to information devoid of identifiers, which their colleagues in Ontario are already benefiting from. But the government has long feared that Quebeckers would see it as an intrusion into their privacy.
“With Génome Québec, we asked experts to survey the population in order to obtain convincing data and to find out whether social acceptability was really an issue,” explains in an interview Carole Jabet, scientific director of the Fonds de recherche du Québec. – Health.
To achieve this, the Léger firm carried out a web survey of 1,502 adults last May, and its results had never been made public *.
“When we received them, we were very enthusiastic,” reports Mme Jabet. We have the support of the population, they see the value of research. ”
Almost 80% of those polled answered that they would accept that researchers have access to their health data, as long as it does not allow them to be recognized.
And eight in ten believe it will improve their own quality of life and that of the population. For the same proportion of them, it is “realistic” to expect to be able to treat and diagnose diseases more easily in this way, and to be able to determine side effects more effectively.
Seven in ten believe that this will allow tailor-made treatments to be developed, depending on each person’s genetic makeup.
And 78% would like to know in advance that they carry a gene that increases the risk of having a serious illness.
Also fears
Fears remain, however. Four in ten say that using health information for research is perilous.
And five in ten believe that such use opens the door to abuse.
Among those opposed to sharing health data, more than four in ten cited various risks: leaks, theft, fraud, profiling, etc. And nearly three in ten said it violated certain principles (freedom, privacy, etc.).
For unexplained reasons, Francophones have been more open to the use of their information than non-Francophones, and more optimistic about its impact.
Another finding: 70% of those polled said they were not familiar (50%) or not at all familiar with the use of health data (19%). They had also not seen, read or heard a report on the subject in recent months.
“We can see that there is still a great need for information and training,” comments Mr.me Jabet. We could organize, for example, information campaigns such as vaccination. ”
Last summer, The press also revealed that the Ministry of Health and Social Services wanted to launch a new web portal, which should allow each citizen to discover how their medical information is used by researchers
* According to Léger, the maximum margin of error for a sample of 1,502 respondents is ± 2.5%, 19 times out of 20.
What to share?
Proportion of respondents willing to accept the following types of sharing:
their health data (without any personal information): 78%
their genetic profile (without any personal information): 74%
their children’s health data (without any personal information): 67%
For what reasons ?
Proportion of respondents who find that the following objectives make data sharing acceptable:
Accelerate research and development of treatments for diseases that are widespread or not: 92%
Improve preventive health actions: 91%
Better plan the needs of the health network based on the state of health of the population: 88%
Adapt treatments according to the personal profile of the sick person: 88%
Prevent drug abuse and drug dependence: 87%
Reduce emergency room visits or unnecessary doctor visits: 85%
Notifying someone that they have a gene that increases the likelihood of developing a serious long-term illness: 78%
Promote the use of telemedicine: 71%
What fears?
Proportion of respondents agreeing with the following statements:
If my health data is shared and used in research, I have fears of intrusion into my privacy: 47%
Research using population health data carries a risk for vulnerable populations: 32%
The risks of research using population health data outweigh the benefits: 28%
Differences by education and income
Proportion of respondents with a “prima facie rather positive” opinion of the use of health data:
60% of all respondents (against 22% having a “rather negative” opinion)
65% of respondents have a university degree
70% of respondents with an annual family income of $ 150,000 or more
Proportion of respondents who believe that this use involves specific risks:
40% of all respondents
51% of respondents with a university degree
53% of respondents with an annual family income of $ 150,000 or more