The purpose of this Request for Applications (RFA) is to provide operating grant funds in support of initiatives that address issues related to collection, use and disclosure of personal information for health research purposes, with a view to:
Timeline | |
| October 1, 2003 | Full proposals must be courier stamped by this date. (Please refer to "How to Apply" section of this document.) |
| February, 2004 | Anticipated notification of decision |
| March, 2004 | Anticipated start date |
| Duration of projects |
Up to 1 or 2 years, varies by objective, please see below: |
| Funds Available |
Objective 1: Up to $400K per grant for the term of the grant (up to 2 years). Objective 2: Up to $200K per grant for the term of the grant (up to 2 years). Objective 3: Up to $100K per grant for the term of the grant (up to 2 years). Objective 4: Up to $75K per grant for the term of the grant (up to 1 year). Total funds available for this initiative: minimum $1,000,000. |
Introduction
Background
Collaborators
Specific Objectives and Eligible Research Areas
Who is Eligible to Apply?
Specific Eligibility Requirements
Mechanism of Support
Funds Available
Allowable Costs
How to Apply
Evaluation Process and Criteria For Peer Review
General CIHR Guidelines and Conditions of Funding
Performance Measurement and Evaluation
Address for Submitting Application and Contact Information
The purpose of this Request for Applications (RFA) is to provide operating grant funds in support of initiatives that address issues related to collection, use and disclosure of personal information for health research purposes, with a view to:
More specifically, the proposals supported by this RFA will address one of the following inter-related objectives 1 :
Objective 1 "Understanding Canadians' Attitudes and Expectations": Enhance our understanding of Canadians' attitudes and their determinants, regarding the use of personal information for health research that has potential to improve health and/ or strengthen the Canadian health care system.
Objective 2 "Promoting Meaningful Public Engagement and Dialogue": Identify, or develop, and evaluate strategies for engaging Canadians more meaningfully in policy discussions regarding the use of personal information for health research purposes, and for effectively channeling this dialogue to inform research practice and privacy legislation.
Objective 3 "Supporting a Robust System of Review and Oversight": Evaluate existing governance frameworks in Canada for review and oversight of privacy protection in health research, including the respective roles and relationships among the Research Ethics Boards, Data Custodians, Data Access Committees and Privacy Commissioners.
Objective 4 "Developing New Conceptual Paradigms for Addressing Privacy Challenges": Analyze and compare ethical, social and legal frameworks governing the use of personal information in health research, and to develop new conceptual paradigms that could guide Canada in addressing present and emerging privacy challenges.
Health research critically, and increasingly, depends on the collection, use and disclosure of an array of personal information. Worldwide, research on entire populations is fast emerging as an important source of new insights that show potential to improve health and strengthen health care systems. Such research often needs to transcend geographic boundaries, cross different sectors, draw from various sources of information, and take place (or employ information collected) over long periods of time. This is necessary, if we are to gain a better understanding of the many genetic, social, economic, cultural and environmental determinants of health and develop more effective strategies for organizing, funding and delivering health care and preventive and health promoting services.
Canada is well placed to be a leader in the fields of population health and health services research. The development of increasingly comprehensive health information databanks and repositories, our strong and vibrant health research community, and our multicultural society combine to make Canada an ideal place to conduct health research in these areas.
However, just as Canadians are passionate about their health and the quality of their health care system, they also care about the privacy and confidentiality of their personal information. The right to control the uses to which such information about oneself are put, and the right to rely on assurances of confidentiality in the context of special relationships, are fundamentally linked to the dignity, autonomy and integrity of the individual. A challenge facing Canada's health research community is to find an acceptable and workable balance between the value Canadians place on the potential for health research to improve their health and strengthen their health care system, and the equally compelling value they place on respecting their right to privacy and confidentiality with respect to personal information.
CIHR is undertaking a number of important, national initiatives the implementation of which will depend critically on the public's acceptance of the use of personal information for such purposes, and on the research community's: (a) understanding of the public's attitudes toward the use of personal information for health research and the conditions under which such use is acceptable, and (b) engaging in best practices in research data custodianship. As one example, the Canadian Lifelong Health Initiative (CLHI) is a unique interdisciplinary cross-Institute, cross-pillar project under development by CIHR. It includes two study components - the Canadian Birth Cohort Study and the Canadian Longitudinal Study on Aging. The CLHI will enable large, multi-centered longitudinal cohort studies of Canadians designed to understand: (a) the role and interaction of different genetic and environmental exposures involved in developmental and aging processes over the life course, (b) the multi-factorial causes and evolution of common diseases, and (c) the determinants of the utilization of health care services over the life course.
Over the last three years, CIHR and its collaborators have hosted a series of national consultations to begin to address these challenges. The initiatives are summarized on the CIHR Ethics Website. In November 2002, CIHR and six of its collaborators sponsored a workshop entitled "Privacy in Health Research: Sharing Perspectives and Paving the Way Forward". More than 100 participants engaged in constructive dialogue aimed at fostering new understandings, proposals, partnerships and collaborations. These participants included privacy guardians, policy-makers, data producers, health service providers, health researchers, public funders, health charities, consumers, members of research ethics boards, as well as experts in law, ethics and privacy. As a result of discussions at this and other CIHR-sponsored forums, a series of high-priority research questions and areas of investigation were identified. Based on those deliberations and recommendations, this RFA is intended to support much-needed research that can help guide researchers, research ethics boards, policy-makers and privacy guardians, among others, in developing improved policies and practices vis-à-vis privacy and health research in the Canadian context. In this regard, this RFA has the following four objectives:
Objective 1 "Understanding Canadians' Attitudes and Expectations": While we know that people vary in their interest in sharing personal information for various purposes, we are uncertain about the factors that determine their willingness to disclose personal information for health research, the conditions under which they are or would be willing to have their personal information used for health research, and the safeguards they expect (or assume) to be in place to protect the privacy and confidentiality of their personal information in this specific context.
Prospectively, it would seem that stakeholders in the health research enterprise would benefit from a better understanding of the various influences on peoples' decisions concerning the use of their personal information for health research purposes. Such influences may include:
Therefore, this RFA seeks to support initiatives designed to enhance our understanding of Canadians' attitudes and their determinants, regarding the use of personal information for health research that has potential to improve health and/ or strengthen the Canadian health care system.
Objective 2 "Promoting Meaningful Public Engagement and Dialogue": In keeping with our societal values, public policy debate about privacy, access to data and health research should be an open and inclusive dialogue, involving many stakeholders. This includes members of the general public whose personal information might be used for research purposes. Yet, public dialogue has been conspicuously absent from discussions to date. Interestingly, in 1999, as the United States was preparing to adopt its privacy regulations under the Health Insurance Portability and Accountability Act (HIPPA) it became evident that all interested parties should be encouraged to engage in a healthy public debate through better comprehension of the issues at hand and more meaningful compromises. Commentators at the time warned of the wide-ranging potential consequences of a failure to include the public in such debate, including adverse effects on the public's confidence in its health care system, but also in its democratic processes. 2 This RFA seeks to support initiatives designed to identify, or develop, and evaluate strategies for engaging Canadians more meaningfully in policy discussions regarding the use of personal information for health research purposes, and for effectively channeling this dialogue to inform research practice and privacy policy.
Objective 3 "Supporting a Robust System of Review and Oversight": Critical to public confidence in the health research enterprise is the assurance that there are effective oversight mechanisms in place to protect their privacy interests. Although there is a growing number of Research Ethics Boards, Data Custodians, Data Access Committees and Privacy Commissioners, to date there has been little systematic evaluation of their respective roles regarding privacy protection, the expertise they have, the perspectives they hold, the resources at their disposal, the interests they protect, etc. Less still is understood about their own systems of accountability and the relationships that exist between these various bodies. Systematic analyses and evaluations of these issues may assist in the development of policies and practices that complement one another and provide more robust systems of protection. Therefore, this RFA seeks to support initiatives designed to evaluate existing governance frameworks in Canada for review and oversight of privacy protection in health research, including the respective roles and relationships among the Research Ethics Boards, Data Custodians, Data Access Committees and Privacy Commissioners.
Objective 4 "Developing New Conceptual Paradigms for Addressing Privacy Challenges": Increasing attention has been given to the practical challenges created by the emerging legal and ethical norms relevant to research using personal information. Research ethics policies, common law principles, and legislation all have profound implications for the work done by a broad spectrum of researchers throughout Canada. Indeed, the rules governing access to personal information have relevance to population and public health, genetics, cancer, gender perspectives, and health services/systems research, to name but a few areas. These rules affect, for example, DNA and tissue storage policies, consent processes, secondary uses of data, research designs and approaches, including data linkage, etc. Most legal and ethical principles today are grounded, at least to some degree, in the notion of individual autonomy. Yet, families and communities, too, have significant interests in matters of privacy and confidentiality. Moreover, foundational legal and ethical principles, such as consent, are meant to apply to discrete data transactions, and obligations to protect privacy are directed at well-defined custodians, such as single individuals or organizations. Yet, such notions sit less well in the reality of modern information technology where data flows are much more complex and multiple custodians increasingly share large amounts of information among themselves to enhance knowledge and decision-making.
In order to better address the realities of health research now and in the future, in order to maximise its potential to improve health and health care, it has been suggested that the "rules that govern informed consent evolved from a very different situation from the one that now pertains, and now might be the time for a fresh ethical perspective". 3 This RFA seeks to support initiatives designed to analyze and compare ethical, social and legal frameworks governing the use of personal information in health research, and to develop new conceptual paradigms that could guide Canada in addressing present and emerging privacy challenges.
Through its national consultations, CIHR has identified and is funding other relevant and related areas of enquiry, including the identification and/or development of best practices among health researchers, research data custodians and Research Ethics Boards. Furthermore, these issues are currently being examined through:
Given this array of national investments, applicants are encouraged to consider ways in which their work relates to these already-existing, CIHR-funded projects and initiatives. We invite potential applicants to consult the documents/abstracts for each of these funded initiatives, at the links provided, to better understand the scope of current investments.
This RFA is seen as the next, logical step in a coordinated approach by CIHR and its collaborators to understand and respond to the concerns of Canadians regarding the use of their personal information for research purposes.
Privacy Commissioners are key collaborators in this important initiative. Many Privacy Commissioners attended the aforementioned November 2002 Workshop and provided valuable input in the discussions regarding research questions. In May 2003, the Privacy Commissioners of British Columbia, Alberta, Ontario and Québec agreed to extend their support to funded applicants on this RFA by facilitating the implementation, uptake and practical application of their research. CIHR is committed to facilitating linkages between funded applicants and one or more Privacy Commissioners, where desired by the applicants and deemed appropriate by the Privacy Commissioners, consistent with their mandates and subject to their available resources.
CIHR is dedicated to identifying and developing collaborations with other funding organizations and stakeholders to enhance the availability of funding for this and future strategic initiatives in this area, and to create opportunities for knowledge translation related to the scope of this particular RFA. As such, please visit the Collaborator Page, where you will find a list of the Collaborators and their specific mandates. This list will continue to evolve as new collaborators join in this initiative. Therefore, we invite you to check it regularly for updates.
This RFA includes four objectives. It is not intended or expected that any single applicant or team responding to this RFA will address all four of the objectives, though this is not precluded. Applicants who seek to apply for funds to address more than one objective must submit separate proposals for each, which will be peer reviewed individually. Investigators applying to undertake work addressing Objective 1 or 2, but not both, should be prepared to collaborate with the successful applicant(s) conducting the other part, as these two components are seen as being necessarily interconnected and synergistic. It is anticipated that work toward Objectives 3 and 4 can occur separately and concurrently.
Eligibility criteria for all CIHR research funding (grant) programs apply. Please refer to Eligibility for Research Funding Programs on the CIHR Website.
The business office of the institution of an eligible Principal Applicant generally administers CIHR funds. The eligibility requirements for Institutions are found on the CIHR Website in the Financial Administration of Funds Guide.
Please note that the following categories of researchers are encouraged to apply:
This RFA is funded as a strategic initiative and is designed to solicit operating project grant applications with duration of up to 1 or 2 years, depending on the Objective(s) addressed (non-renewable).
Applicants should review CIHR's guidelines on Eligible Expenditures for Research Funding Programs for a complete listing and description of allowable costs and activities.
Please note that allowable costs include the use of survey research centres (located at a university or not) to implement research methodology.
The full application must provide a detailed justification of all costs.
Please indicate "Compelling Values: Privacy, Access to Data and Health Research" beside the checkbox labeled "Strategic Initiatives/RFA" in the General Information section of the Research Module (page 7 of the PDF form).
There will not be a registration component to this RFA. Therefore, there is one step to applying for this RFA (please see below).
Each proposal must describe how the grant will address one or more of the areas described under "Specific Objectives and Eligible Research Areas" above. Prior to peer review, CIHR Institutes and/or their Institute Advisory Board Members (IAB), and Partner representatives will evaluate proposals for relevance/responsiveness to the objectives of this initiative in relation to their respective mandates. As such, they will have access to the full application except for the administrative and personal information pages (pages 3, 5, 6 and 7 of the Research Module and the cover pages of the CV modules).
A CIHR peer-review committee will evaluate applications. The committee may be drawn from one of CIHR's pre-existing committees or may be created specifically for this Initiative. Committee members are selected based on suggestions from many sources including the Institute(s) and Collaborator(s). Names of committee members are published on the CIHR website. The committee will follow the CIHR peer review process for grants.
General criteria for assessing applications are listed below. It is understood that referees and committees will weigh questions such as these differently from one application to another:
The Research Proposed
The Applicant's Productivity, Experience and Training
In addition to these general criteria, the peer review committee shall consider the criteria below:
On completion of the review, the Institute(s) and/or their IAB and collaborator(s) will receive the ranking lists, merit scores (ratings) and recommendations (approved term and funding amounts of the proposal) of the Committee for the applications that fall in the fundable range. Based on the total funds available for the initiative, applications will be funded from the top-ranked down as far as budget will allow. Separate funding pools will be established to ensure that at least one meritorious application is funded for each of the four objectives, subject to the stipulation that applications receiving a score of less than 3.5 will not be considered for funding, even if this means that no work is supported for one or more of the four objectives.
All conditions, as specified in CIHR's Grants and Awards Guides , shall apply to those funded through this initiative. Conditions cover areas such as Applicant and Institutional Responsibilities, Ethics, Official Language Policy, Access to Information and Privacy Acts, Acknowledgement of CIHR support etc. Successful recipients will be informed of any special financial conditions when they receive CIHR's Authorization for Funding Form (AFF).
In addition to CIHR standard guidelines and requirements the following shall apply:
The Nominated Principal applicant is asked to provide CIHR's Ethics Office with a final report by March 31, 2006 (for Objectives 1, 2 and 3) and by March 31, 2005 (for Objective 4) at the latest, on the findings and conclusions of the research performed. Successful applicants are also encouraged to take all reasonable steps to ensure timely dissemination of research findings to a broad array of appropriate audiences and stakeholders, including but not limited to CIHR's Research Priorities and Planning Committee which meets in Ottawa monthly. CIHR's Ethics Office and Institutes will serve to assist successful investigators in linkage and exchange opportunities with stakeholder audiences.
Communication Requirement
CIHR has plans to assess performance of this initiative through ongoing monitoring and periodic evaluation. We are committed to informing Canadians about the performance of our initiatives and the results that they deliver.
The following table is intended to further clarify objectives by linking them to expected outcomes and measures. All funded applicants will be expected to participate in the evaluation strategy, contributing advice, data and reports as required for assessment purposes.
| Objective | Outcome | Measure / Indicator |
| Enhances understanding of Canadian's attitudes, and their determinants regarding the use of personal information for health research that has potential to improve health and/or strengthen the Canadian health care system. | Comprehensive identification, quantification and analysis of Canadians' attitudes and determinants of those attitudes. |
Evaluation of researcher's final report. Assessment of the internal and external validity of findings. Accounts of the usefulness of the information derived from the work. |
| Identify, or develop, and evaluate strategies for engaging Canadians more meaningfully in policy discussions regarding the use of personal information for health research purposes, and for effectively channeling this dialogue to inform research practice and privacy legislation. | Better understanding among stakeholders regarding best practices in engaging Canadians more meaningfully in policy discussions, and for channeling this dialogue to inform research and privacy legislations. |
Evaluation of researcher's final report. Accounts of the usefulness of the information derived from the work. |
| Evaluate existing governance frameworks in Canada for review and oversight of privacy protection in health research, including the respective roles and relationships among the Research Ethics Boards, Data Custodians, Data Access Committees and Privacy Commissioners. | Better understanding among individuals who hold oversight responsibilities about variability in practice and profile of best practices. |
Evaluation of researcher's report Quality and comprehensiveness of evaluations conducted. Accounts of the usefulness of the information derived from the work. |
| Analyze and compare ethical, social and legal frameworks governing the use of personal information in health research, and to develop new conceptual paradigms that could guide Canada in addressing present and emerging privacy challenges. | Better understanding among individuals who design and implement applicable ethical, legal, and policy frameworks. |
Evaluation of researcher's report Quality and comprehensiveness of evaluations conducted and recommendations proposed. Accounts of usefulness of the information derived from the work. |
Send Application by Courier to:
RE: "Compelling Values: Privacy, Access to Data and Health Research"
Canadian Institutes of Health Research
Research Portfolio
410 Laurier Avenue W., 9th Floor
Address Locator 4209A
Ottawa, ON K1A 0W9
Contacts for Further Information:
A) For questions regarding application forms, submission requirements, the review process please and funding guidelines, please contact:
Krista DiBartolo
Program Delivery Coordinator
Canadian Institutes of Health Research
410 Laurier Avenue West, 9th floor, Address Locator 4209A,
Ottawa, ON K1A 0W9
Tel: (613) 941-4644
Fax: (613) 954-1800
Email: kdibartolo@cihr-irsc.gc.ca
B) For questions about this initiative and research objectives contact:
Michèle O'Rourke
Associate, Strategic Initiatives
CIHR - Institute of Health Services and Policy Research &
Institute of Population and Public Health
410 Laurier Avenue West, 9th floor, Address Locator 4209A,
Ottawa, ON K1A 0W9
Tel: 613-952-4539
Fax: 613-941-1040
Email: morourke@cihr-irsc.gc.ca
1 Please note that prospective applicants are encouraged to apply for funds to address more that one objective. However, those applicants must submit separate proposals for each objective, which will be peer reviewed individually. For more information, please see the "Specific Objectives and Eligible Research Areas" section of this document.
2 Freeman P. & Robbins A. The U.S. health data privacy debate. Will there be comprehension before closure? Int J Technol Assess Health Care. 1999 Spring;15(2):316-31.
3 Chadwick R. & Berg K. Solidarity and equity: new ethical frameworks for genetic databases. Nat Rev Genet. 2001 Apr;2(4):318-21.
4 Researchers who are employed by the federal government are not eligible to apply for CIHR grants as Principal Applicants unless they hold a university appointment, in which case the university must agree to be the "Institution Paid" which holds CIHR funds in trust - for more information, please refer to the Obligations of Eligible Institutions.
