We are further enriching the Research Platform that participants have helped to create. We are doing this by adding their personal health information routinely collected as they access the health care system.
We are adding information from the following sources:
- visits to family physicians – e.g. reason for visit, procedures, etc.;
- visits to out-patient and community-based clinics – e.g. reason for visit, etc.;
- visits to emergency rooms – e.g. reason for visit, how a patient arrived, whether or not they were admitted, etc.;
- visits to in-hospital clinics – e.g. reason for visit, treatment or procedures performed, etc.;
- hospitalization – e.g. reason for hospitalization, treatment or procedures performed, length of stay;
- cancer diagnosis and treatment captured in Cancer Registries and Treatment databases and
- Vital Status captured in registries of births and deaths – e.g. cause of death.
We are adding information from as far back as is available in each source up to the present, some go back to the early 1990’s. We will be updating annually for the next 30 years.
Please contact us if you would prefer that we do not add your routinely collected personal health information to the Research Platform.
How will we use the Research Platform?
The Research Platform is a powerful resource to study not only cancer but also a whole range of chronic diseases, such as heart disease, stroke, type 2 diabetes, obesity, arthritis and mental health conditions. As you may know Atlantic Canada has some of the highest chronic disease rates in the country – and this includes conditions such as multiple sclerosis and inflammatory bowel disease as well as cancer. Research into the causes and consequences of chronic diseases has never been more important.
Of course, all personal information, from all sources, will continue to be kept confidential with tight security and data protection. Research data will be anonymous and not identify participants and all research studies will have research ethics approval by the university or similar institution with which they are affiliated.
Research ethics approval is given by Research Ethics Boards (REB). A REB 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?
Atlantic PATH has a fundamental ethical obligation to carefully protect the information and biological samples that we hold in the Atlantic PATH Research Platform. We meet this obligation by complying with the Personal Health Information legislation in each Atlantic Province.
We will never give out any information that identifies or could identify our participants.
The Atlantic PATH Data Access Committee reviews each proposed research project to make sure that the researcher has good standing, that a Research Ethics Board (REB) has approved the ethical aspects, that the researcher has the skills and resources to do the proposed work, and that the research will add knowledge.
When approved, the Director of Information Technology and the Database Manager extract the requested information from the study data provided by participants and the routinely collected personal health information acquired through linkage. All information that could identify our participants is removed from the extracted data.
Before any information is released, the researcher and the legitimate research organization that they work with, must sign an agreement with Dalhousie University. This Agreement specifically forbids researchers from identifying any participants.
When the project has been completed, the results will usually be published or presented. We will review the results before publication or presentation to make sure that participants cannot be identified.
Participation is completely voluntary and you may change your level of involvement with Atlantic PATH.
You may choose:
No further contact – We will not contact you for more information. The information that has already been given will continue to be included in future research projects.
No further use/complete withdrawal – We will destroy all information and biological samples that you provided and we will not contact you for more information.
Please contact us if you would like to change your level of involvement.