Vardit Ravitsky and Judy Illes provide a summary overview of progress being made at CIHR with respect to its ethics mandate.
In 2014, the Canadian Institutes of Health Research (CIHR) revamped its Standing Committee on Ethics and tasked it with providing high-level strategic advice on the ethical, legal, and sociocultural dimensions of health research. Per the Committee’s Terms of Reference, there are 14 voting members. Among them are three Canadian ethics experts and two senior international ethics experts, two CIHR Scientific Directors, two members of the public, and various other stakeholders (including a member from industry and a health journal editor). At the present time, not all of these positions are filled.
Taking into consideration the history of ethics at CIHR and the future needs of the health research community, the Standing Committee on Ethics immediately embarked on the creation of an Ethics Action Plan to set clear, rigorous and impactful objectives.
The Plan was endorsed by CIHR’s Governing Council and then finalized and approved by the Standing Committee on Ethics in January 2015. The Plan sets out to strengthen Canada’s leadership in ethics and to systematically embed consideration of ethical issues into CIHR’s operations. It emphasizes the importance of nurturing and monitoring ethics research capacity, capturing and assessing the impact of ethics activities within CIHR-funded research, and ensuring that ethics considerations inform CIHR decisions regarding priority-setting, policies, partnerships, and peer review.
To achieve these goals, the Standing Committee on Ethics recognized the need for baseline data. To this end, with CIHR’s support, the Committee developed a Logic Model to guide the process of selecting, defining and refining performance indicators. The outcome is a well-developed and refined Performance Measurement Strategy.
What does the Performance Measurement Strategy measure? In the immediate term, it measures indicators of leadership by capturing variables such as the number of ethics education webinars, sessions, and events produced by CIHR, and the number of people who benefit from them. It measures accountability by keeping track of the number of CIHR policies that include an ethics component, and the percentage of CIHR governance and advisory bodies that include ethics stakeholders. It also measures the number of issues discussed and addressed by the Standing Committee on Ethics that become action items for CIHR.
Over the longer term, the Performance Management Strategy will deliver indicators of whether the ethics knowledge base in Canada is strengthened and expanded. These indicators will capture both the investment in ethics research (for example, percentage of total CIHR expenditures for ethics research, number of researchers funded, and number of grants and awards) and its impact (for example, number of publications with an ethics component from CIHR-funded researchers and papers cited).
Through these efforts, CIHR and the Standing Committee on Ethics will be able to gauge whether the ethics research community is getting stronger. This strategy also ambitiously attempts to capture even longer-term measures regarding the way ethics research informs decision-making and practices in health and health research, using outcomes measures such as the percentage of ethics grants with findings that contribute directly to improved health, or to more effective health services or products.
The first annual report based on these measures was published by CIHR in December 2016 (see Appendix 4). It shows that CIHR’s total budget for grants and awards in 2015-2016 was of $973 million. Of this total, $18.26 million (2.03%) was for grants and awards related to ethics: specifically, $2.09 million for grants and awards with ethics as a primary focus, and $16.17 million for grants and awards with sociocultural factors related to ethics as a primary focus. Grants and awards in this second category included projects that explore concepts such as cultural appropriateness and norms; vulnerability, marginalization, and stigmatization; access to culturally appropriate materials and services; and equity/inequity.
In addition to this funding for ethics research, $1.49 million was invested in research ethics oversight – funding for the Panel on Research Ethics and for the Canadian Council on Animal Care. As well, there was $0.56 million for grants and awards with law as a primary focus. These numbers are not high overall, but they provide important benchmarks against which progress will be measured.
We believe this report is a crucial step towards enhancing the capacity of CIHR to meet its ethics mandate as required by the CIHR Act. Without baseline data, it is impossible to evaluate future investments in ethics and related areas of research and the level of commitment CIHR is demonstrating in this area. We are proud to have been part of the initiative that led to the production of this report. We invite the Canadian ethics community to follow regular updates on the work of the Standing Committee on Ethics and to communicate with its members, as appropriate, to meet the evolving needs of the ethics research community.
Judy Illes is a Professor of Neurology and Canada Research Chair in Neuroethics, and the Director of the National Core for Neuroethics at the University of British Columbia. @JudyIlles @NeuroethicsUBC
Conflict of Interest: Vardit Ravitsky and Judy Illes are members of the CIHR Standing Committee on Ethics. Ravitsky is also a member of CIHR’s newly constituted Institute Advisory Board on Research Excellence, Policy and Ethics. Judy Illes is also a Reviewer for the CIHR Foundation Scheme. The opinions expressed here are their own and do not represent those of CIHR or the Government of Canada.