Evaluation of the CIHR Privacy Best Practices
2005-2007 Initial Implementation Phase
Conceptual Framework and Evaluation Tools
The Initial Implementation Working Group (IIWG) is evaluating the use, usefulness, and impact of the CIHR Privacy Best Practices (PBPs) document over the next two years. Working with the IIWG, Dr. Nathalie Kishchuk, an evaluation consultant, developed a conceptual framework for the implementation phase of the Privacy Best Practices document (see Figure 1).
Within this framework, the IIWG identified the following key desired outcomes over the short and medium term:
- Better understanding of key privacy issues among research ethics boards (REBs) and of the impacts of the Privacy Best Practices (PBPs) docoument on decision-making
- Increased awareness of privacy issues among researchers
- Development of a common language and more harmonious dialogue around privacy issues among researchers and REBs
- Articulation of the optimal relationship between the PBPs and the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS).
From this conceptual framework, a set of evaluation tools were developed and pre-tested, and target groups were identified (see Table 1).
Volunteers Needed for Evaluation of the CIHR Privacy Best Practices (PBPs) Document
- A new web survey will be posted in the fall of 2006 to gather feedback from users of the PBPs document.
- Focus groups led by a professional facilitator will be scheduled to coincide with the National Council on Ethics in Human Research (NCEHR) conference 2007, and the Canadian Association of Research Ethics Board (CAREB) Annual General Meeting 2007. If you plan to attend either of those events, and would be interested in participating in a 60-minute focus group to discuss the CIHR PBPs document, please email us with your coordinates, and indicate which venue is convenient for you.
- Other ways of gathering feedback will target particular user groups (see Table 1).
Participation in this evaluation phase is on a voluntary basis. All feedback collected during this phase will be used only for project evaluation purposes. Any reports of the results of this evaluation may identify stakeholder groups, but will not identify individual respondents. More information about CIHR's Privacy policy and legal framework.
Data gathered during this phase will be collected and analyzed by a consultant. The IIWG will then prepare a report in the fall of 2007 for public dissemination, which will include a summary of feedback received, and recommendations for any improvements to the PBPs document and a long-term implementation strategy.
Table 1: Overview of Evaluation Tools for the Initial Implementation Phase of the CIHR Privacy Best Practices (PBPs) document
| Evaluation Tools & Target Groups | Time line |
| Web survey: outreach to the general public, researchers, research ethics board members, etc. | September 2006 to Spring 2007 |
| Telephone surveys of key user groups (ethics community stakeholders, REB members, selected CIHR peer review committee chairs) and of volunteers from those who received printed copies of the PBPs on request or at conferences | Fall 2006 and Winter 2007 |
| Focus groups with users of the PBPs- primarily research ethics boards (recruitment mainly from attendees of the National Council on Ethics in Human Research conference and the Canadian Association of Research Ethics Boards Annual General Meeting) | Winter and Spring, 2007 |
| Compilation of outreach information from the CIHR Ethics Office's records and web site (distribution of PBPs, dissemination at workshops and conferences, web statistics, initial mini-survey) | October 2005 to Spring 2007 |
