Français| Privacy | 1-844-285-7284

Linkage

The Atlantic PATH Research Platform is being enriched by adding our participants routinely collected information through linkage to provincial health databases.

Provincial government departments and organizations across Atlantic Canada routinely collect information about our health care access and use.

We are requesting information that includes:

  • visits to family physicians,
  • out-patient and mental health clinics,
  • emergency rooms,
  • in-hospital clinics,
  • hospitalization,
  • cancer diagnosis and treatment captured in Cancer Registries and Treatment databases,
  • Vital Status captured in registries of births and deaths.

We are working with the government departments and organizations that are responsible for these databases to add information from as far back as it is available, for some going back to the early 1990’s, to the present with annual updates for the next 30 years.  Over time we may be adding more information, details will be updated on this website.

 

How are Researchers using participant information?

Every person who would like to use participant information or samples must be a researcher in good standing who is part of a legitimate research organization such as a University.

Their research projects must have been approved by a Research Ethics Board which is a group of researchers, community members, and others with specific expertise in their fields established to review the ethical acceptability of all research involving humans.  This group reviews projects to make sure that research will be done in a way that has considered the inherent worth of persons involved, has concern for welfare and that all persons will be treated fairly and equitably.

 

How do we protect the privacy and confidentiality of our participants?

We will never give out any information that identifies or could identify our participants.

The Atlantic PATH Data Access Committee reviews each proposed project to make sure that the researcher has good standing, that a Research Ethics Board has approved the ethical aspects, that the researcher can actually do the proposed work, and that the research will add knowledge.

When approved, the information that the researcher has asked for is pulled together from the Study data provided by participants gave and routinely collected information acquired through linkage.  This data for the researcher is carefully reviewed to make sure that nothing included could identify a participant.

The researcher, and the legitimate research organization that they work with, must sign an agreement with Dalhousie University which among other things specifically stops them from identifying any participants.

When the project has been completed, the researcher will typically want to publish or present their findings.  We will review the findings that a researcher wants to publish or present to again make sure that no participant can be identified.

 

Withdrawal options:

Your participation is completely voluntary.

You can let us know if you would like to change your level of participation:

  1. No further contact – We will not contact you for more information. The information you have given will continue to be included in future research projects.
  2. No further use/complete withdrawal – we will not include the information you have given in future research projects and we will not contact you for more information.
  3. No linkage – We will not ask government departments or organizations for past, present or future routinely collected information about you. However, we will continue to include the information and biological samples that you have already given us in future research projects.

 

Did you move, change your phone number, or switched email addresses?

Let us know! Being a 30 year study, It's important that we are able to stay in touch with our participants. Click here to update your information


Visit Us On TwitterVisit Us On FacebookVisit Us On YoutubeCheck Our Feed