Sharing health data for research

In Canada, health care spending has been estimated at $264 billion for 2019, or $7,000 per person. It is growing at an unsustainable rate. To reduce costs and improve care and the health system, research teams need to use reliable health data.

While a lot of health data is generated daily in clinics and hospitals, very little is used for research. Every day, citizens make decisions that matter to them, in the field of health care as elsewhere. They are overwhelmed with information. How can they be informed of the benefits of research and at the same time agree to share their health data?

The CLARET team, co-directed by Dr. Annabelle Cumyn, professor of medicine at the Université de Sherbrooke, has conducted a study on this ethical issue. It published its results in December 2019 in the journal Learning Health Systems.

In an interview, Dr. Annabelle Cumyn explains: “From an ethical and legal perspective, we must ensure the autonomy of individuals and protect their privacy. So we need to think about how to combine free and informed consent with the use of health data for care and research.” Her team explored the intricacies of consent by reviewing 50 peer-reviewed articles.

Let’s illustrate the different forms of consent by means of web browsing. Some websites inform users that they use cookies to collect usage data. If no choice is offered, this lack of consent is referred to as “non-consent”. If users can choose to enable cookies to authorize use of the data, this is called opt-in consent. If users can choose to disable cookies to withdraw their consent, this is called opt-out consent.

In the health field, the Régie de l’assurance maladie du Québec records and analyzes data from Quebec citizens. Ethical rules and laws protect individuals. Society accepts that this data may be used without individual consent. Opt-in consent is used to obtain a person’s agreement to participate in a research project. Consent can be withdrawn at any time.

There are, however, some impediments. There are thousands of research teams in Canada. They have difficulty obtaining individual consent by opt-in in a timely manner when they want to use recent data. These procedures overload individuals with information and slow down research.

Based on research in bioethics at the University of Copenhagen, the CLARET team proposes to use “meta-consent”. In her article, Dr. Cumyn writes: “People would be asked how, when and to what extent they would want to be asked to consent to the use of their health data”. Meta-consent would avoid overwhelming people with information. People would be able to position themselves in advance about how they want to give consent to share their health data in the future.

“In a parallel study we conducted, two-thirds of citizens favoured autonomy and one-third prioritized the common good, » Dr. Cumyn said in interview. “If society just emphasizes autonomy, it gets stuck and can’t move forward. If it puts the common good first, it risks imposing laws that will diminish people’s trust and undermine their autonomy. Meta-consent combines autonomy with the common good,” she concludes.