Primary health data is ___.
identifiable and refers to a specific person.
What is patient-identifiable data?
Data that can be linked to a specific person (is identifiable).
Secondary health data is ___.
registries and other databases.
To create aggregate data, we first have to ___.
de-identify the data.
What is aggregate data?
Data of groups of individuals with no identification.
What does aggregate data do?
It gives specific information on the population.
Does all data have to be de-identified?
No.
In what cases might we need to identify the patient?
For legal documents such as in a disease report.
All data for primary care is identified and all data for secondary cases is de-identified. True or false?
False because there are always exceptions.
What other uses might data be used for other than direct care?
- Quality or safety measurement
- Outcomes analysis
- Research
- Public health surveillance
- Determining the cost and funding of health services
- Policy development
- Provider/Organization certification or accreditation
- Marketing or other commercial activities
What is the main use of primary data?
Clinical care
Secondary data is often aggregated and de-identified. True or false?
True
What is the difference between primary and secondary data?
Primary: identifiable, individual and specific
Secondary: de-identified (mostly), in large groups and aggregated
Who is the main contributor to primary data?
The patient
What are indexes and what are they used for?
Collections of data; used for secondary purposes and for easy access to said data, used for organizing.
What are registries?
A collection of information about individuals, focused on a specific diagnosis or condition; a type of database that houses a specific data.
Registries are more often collected at the ___ for the coordination and analysis of services. To track trends and patterns of ___.
provincial or national level, illness.
What is the difference between registries and indexes?
- Indexes are more generalized, and are used within different facilities, usually within the same province.
- Registries are more specific and detailed and are mostly collected within the provincial and national level. It's mostly used for gathering data on a population.
What is CIHI and what do they do?
The Canadian Institute for Health Information; they are responsible for many databases and registries. They are involved in the development of population health indicators.
What is Statistics Canada?
Canada's central statistical agency; made to produce statistics on populations resources, the economy and more for the whole of Canada and each province.
Name 3 registries that Statistics Canada has.
- Canadian Cancer Registry
- National Trauma Registry
- Canadian Joint Replacement Registry
What is Minimum Data Set (MDS)?
The essential information that is needed to describe a certain population (demographic) a hospital stay, or other treatment or care or health assessment. Several MDS have been developed for various purposes in the health care system.
Why is important for health care organizations to contribute data to registries?
Helps health care professionals to identify trends in diseases and conditions and allows researchers to study how to improve treatment of diseases & Conditions.
You have been asked to provide a copy of all the patients discharged with a diagnosis of Myocardial Infarction (MI) for the past year in your facility. The listing would be obtained from what index?
Disease Index
What are the limitation to secondary uses of data?
- Data quality may not be the same of those for primary uses.
- With coding it's very general. There are no specific details, doesn't say the why, how, hx, etc.
What are the 10 fair information principles?
- Accountability
- Identifying the purposes for the data collection
- Consent
- Limiting collection
- Limiting use, disclosure and retention
- Accuracy
- Safeguards
- Openness
- Individual access
- Challenging compliance
The Personal Information Protection and Electronic Documents Act (PIPEDA) is at the ___ level, PHIA is ___ level.
federal, provincial
PIPEDA is superseded by provincial privacy laws. True or false?
True
What is the biggest agency in Canada that conducts research?
The Canadian Institutes of Health Research (CIHR)
What institution/board must someone get an approval for before they can gain funding and start research?
A university's/institutional research ethics board (REB).
To approve research what factors must the REB ensure?
- Whether or not the data needs to be identified and how crucial that is to your research.
- Confidentiality of data is ensured through proper safeguards.
- The potential harm to the subjects is minimized.
- Have obtained consent from the patient.
- Understand the sensitivity of these issues and the risks attained if breached.
What is a clinical data repository (CDR)?
They are a collection of many databases which allow the transaction of data within a single access point. Accessible, and used mainly for secondary purposes.
A repository can be modified. True or false?
False; it cannot, it can only be viewed.
What is a disadvantage of a repository?
It can't be updated in real time.
What are some of the safeguards that CIHR has set for secondary uses of data?
- Minimization of harm
- Consent from the subjects
Why are secondary data sources developed?
For research, policy making and for the law.