Archive: Highly Qualified Consumer (HQC) Database

What you experience every day, living with arthritis, is valuable information for the scientists and rheumatologists conducting research to cure or treat your arthritis and improve your quality of life.

Since the Canadian Arthritis Network was formed in 1998, a relatively small group of informed patients - consumers as they are called in the arthritis community - have been assisting the Network's researchers with their projects by acting as consultants or collaborators.

Now the Canadian Arthritis Network's Consumer Advisory Council is asking you to help shape arthritis research. By adding your name to a new online database, researchers will be able to choose from a large group of volunteers living across Canada and representing all the different types of arthritis. If you participate, you will not be asked to volunteer for clinical trials or market research and you will always have the option to decline research requests.

The Highly Qualified Consumer (HQC) Database will assist researchers in vital work and this will ultimately benefit you as a person with arthritis.

Frequently Asked Questions

1. I'm not a scientist. How can I contribute?
No experience is required. Only your knowledge of your disease and your day-to-day experiences of living with arthritis are being sought.

2. What's involved and how much time will this take?
This will vary from project to project. Before committing yourself, you will be able to discuss the time commitment and other requirements with the researcher.

3. What's in it for me?
Consumer collaborators and consultants find contributing to arthritis research very interesting, stimulating and personally rewarding. You will have a real impact on arthritis research being conducted in Canada, and the results may benefit you directly.

4. Will I have to travel?
If travel is necessary, this will be established in advance and you always have the option of declining.

5. Will this cost me anything and will I be reimbursed for my time?
Travel costs and other approved expenses are often covered up to a maximum amount that varies across studies. The research project manager can explain how this works in advance.

6. Will I have to try any medications or treatments?
No. The HQC Database will not be used to recruit patients for medication trials.

7. Can I say 'no' to a researcher who approaches me to participate in a study?
Yes. You always have that option.

8. Can I remove my name from the database whenever I like?
Yes. You have access to your database profile and can make edits whenever your personal information changes, plus you can "deactivate" your profile at any time.

9. Should I expect a large number of calls from researchers who wish to have me participate in their studies?
This is unlikely to occur, and you will always have the option of declining any request. As well, the HQC Coordinator will be screening requests to prevent this.

10. Will my personal information be used for anything else or shared with other organizations?
Absolutely not. By law, your personal information cannot be shared. Your full profile is confidential and only the HQC Database coordinator will have access to it.

For more information please contact Everdina Carter at 416 586-4770.