Watch the second Data Governance Engagement Session video: The Backdrop for Development of First Nations Peoples' Data Governance and Health Indicators
In 2014-2016, the First Nations Health Authority (FNHA) is collecting health-related information from at home (on-reserve) BC First Nations using two surveys: the Regional Health Survey (FNRHS) and the Regional Early Childhood, Education, and Employment Survey (FNREEES). The FNHA will use data collected from these surveys to address the wellness needs and priorities of BC First Nations communities by producing a report with provincial results, and results for each Health Authority. We would like to thank participating BC First Nations communities; data collection is complete for the FNREEES and currently underway for the FNRHS.
Building on the success of recent data governance forums the FNHA has initiated a series of 'Research Rounds' that aim to provide information about all things research. The fourth installment of 'Research Rounds' describes two important elements of research ethics: 'Privacy and Confidentiality', and how these principles protect against disclosing sensitive health information and exposing the identity of survey participants. Enjoy!
Research Rounds #4 - Research Ethics
By Anya Smith, PhD
Statistical Coordinator – Regional Surveys
Privacy
In general terms, the concept of 'privacy' in research applies to individuals and their right to control the disclosure of their personal information to others, including researchers. There are many ways in which privacy can be protected and upheld. One example of how the FNHA and its national partner (First Nations Information Governance Centre - FNIGC) strive to protect this individual right is to ask the minimum number of sensitive questions within the surveys necessary to achieve a comprehensive picture of health and wellness for BC First Nations. In this way, the FNHA and FNIGC respect the privacy of respondents by not asking personal questions deemed unnecessary. Also, participants are given the opportunity to exercise control over the information they share by providing informed consent to conduct the survey, for example. Consenting to participate is completely up to the participant and involves reading and approving a form outlining topics such as the purpose of the survey, the benefits of conducting the survey, what will be done with the information collected, and how the FNHA and FNIGC will protect your privacy.
Confidentiality
Confidentiality is a form of privacy, but it applies to data, rather than to the individual. Where privacy can be thought of as a right held by an individual to disclose personal information, the responsibility of keeping that information confidential is upon the people and/or organization(s) collecting the information. For example, FNHA and FNIGC researchers and other employees with access to FNRHS and FNREEES data are required to sign a confidentiality agreement that legally binds them to keep details about individual responses private. Other measures taken to uphold confidentiality include storing data securely on the FNHA server and de-identifying individuals by using numbers instead of names before sharing the final datasets with employees who analyze the data. The names of participants are only kept on the secure FNHA server and in a separate, locked cabinet, both accessed by a restricted number of employees. Also, data are reported in aggregate form, meaning health and wellness information is reported about populations of people at the provincial and Health Authority levels, not about individuals, minimizing the risk of personal identification. To further prevent any chance of personal identification, statistics based on small numbers of respondents or small populations are not reported.
Questions about our research? Please email RHS@fnha.ca orFNREEES@fnha.ca
