It may seem surprising that a research team asks participants of a project for their health insurance number! However, this is valuable information in order to better understand how chronic pain is treated on a daily basis. Lack of knowledge of the usefulness of medico-administrative data is often the source of fears surrounding this practice.
Whenever we go to the hospital and use our health insurance card, consult a medical doctor or buy a prescription drug at the pharmacy, the information is listed by the government. The information is intended to ensure the proper functioning of the health system, for example, allocate budgets to hospitals, ensure the remuneration of health professionals, and offer Quebecers who don’t have private insurance, coverage for the purchase of their medications. This is the medico-administrative data! By analyzing it, you can create very precise and useful scientific data.
For example, the data allows identifying who is most at risk of going to the emergency room after a back injury in order to plan prevention, knowing who has access to a pain clinic, or studying the risks and benefits of the long-term use of drugs. Never having contact with the health system is also an interesting fact itself. For researchers, linking this administrative data to the answers provided in the questionnaires of a research project is a great opportunity for science progress. To be able to do this, however, we must have the participants’ consent and the information allowing this match (health insurance number, date of birth, last name, first name, sex). This is the reason why we sometimes ask you for such personal information. When participants agree to give us this information, we are able to request government access under the guise of extremely strict rules to ensure data confidentiality.
We recently carried out a study on the trust of Quebecers living with persistent pain in regard to sharing such personal information on the web. Although, only 48% of participants agree to share this information, this group is representative of Canadians suffering from persistent pain, which makes it possible to set up a very useful data infrastructure to better understand how persistent pain is treated on a daily basis. Having explored the reasons for the refusal, we are also able to better respond to the concerns of participants in future projects.
This study was funded by the Quebec Drug Research Network (RQRM) and carried out in partnership with Gabrielle Pagé, Line Guénette and Professor Lucie Blais from the Université de Montréal, an active member of the RQRM.