CanPREP (Canadian Program of Research on Ethics in a Pandemic)
As pandemic planning progresses, the salient ethical, legal, and social issues have come into greater focus. Likewise, the unanswered questions relevant to an effective national and global pandemic response are crystallizing.
These questions include:
- What are the obligations of health care providers in a pandemic crisis and what are the reciprocal obligations of the healthcare system to health care providers?
- How should limited resources be allocated in a pandemic?
- How should information be communicated to the public during a pandemic and who should lead the public dialogue?
The way in which these questions are framed and the answers that are forthcoming will have significant implications for the building and maintenance of public trust, for the process of public engagement, and for the protection of vulnerable and special needs populations.
To address these pressing questions, we have assembled a multi-disciplinary team of health researchers, practicing clinicians, policy developers, program administrators, research users, professional associations, regulatory bodies, and citizen groups. The applicants have proven track records both in conducting policy-relevant research and in training highly-qualified professionals in bioethics, health care research, and clinical practice. Our proposal builds upon an existing and growing research platform in the area of public health ethics at the University of Toronto Joint Centre for Bioethics (JCB). This platform was initiated during the SARS crisis, was further refined by CIHR-funded research on the ethical issues raised by SARS, has included extensive scholarship on priority setting in healthcare systems, and has been extended by recent work on ethical considerations in pandemic planning and preparedness. The output of the pandemic planning work was the 2005 report “Stand On Guard For Thee”; that outlined a comprehensive ethical framework and planning guide for pandemic preparedness. This JCB document was influential in framing the World Health Organization (WHO) pandemic planning guidelines and has been incorporated and adapted into pandemic plans at the local, national, and international levels.
Addressing the complex ethical challenges in pandemic preparedness requires contributions from, and integration of, disparate domains and discourses. Potential research activities include:
- conceptual scholarship (ethical theory, philosophy, social sciences)
- multiple methods of collecting and analyzing data embracing both the qualitative (e.g., document analysis, key informant interviews, focus groups) and quantitative traditions (e.g., surveys)
- consensus building techniques (e.g., Delphi)
- public engagement strategies (e.g., citizen councils, electronic town halls, research-based theatre.)
To successfully integrate these methodologies and modalities, we propose to create the CanPREP Collaboratory in pandemic ethics. A collaboratory is “an organizational entity that spans distance, supports rich and recurring human interaction oriented to a common research area, and provides access to data sources, artifacts, and tools required to accomplish research tasks.” A collaboratory model is ideal for conducting research with multiple, geographically-dispersed collaborators in ethics and health policy.
Within the collaboratory environment, members of the research team (including investigators, end-users, collaborators, and research trainees) will collectively deliberate at all stages of the research process, from the formulation of the specific research questions through data collection and analysis to knowledge translation and communication of research results. We will employ the principles of participatory design, adapted from urban design and architecture.
Participatory design is “an approach to the assessment, design, and development of technological and organizational systems that places a premium on the active involvement of workplace practitioners (usually potential or current users of the system) in design and decision-making processes.” These concepts are applicable to a process that actively involves end-users in design processes to help ensure that the research program meets their needs and is user-friendly.
We propose a collaborative program of research comprised of three interlinked working groups focused on three key ethical issues:
- Health care provider obligations and institutional support for health care providers
- Priority setting for scarce resources
- Risk communication and knowledge translation.
Each of the working groups will bring together investigators, end-users, community partners, and research trainees to conduct interdisciplinary collaborative scholarship with immediate policy relevance. Bisecting these key ethical issues are three cross-cutting themes:
- Public trust
- Public engagement/social networking tools
- Protection of vulnerable and special needs populations
To explore these linkages, we plan to employ innovative stakeholder engagement methods optimizing the use of information technology and electronic communication strategies.
A key element of this research program will be to provide superior training and development opportunities for graduate students, post-doctoral fellows, and new investigators in an environment that fosters inter-disciplinary scholarship and that affords significant opportunity to collaborate with end-users such as policy makers. It is expected that, for each of the three key ethical issues, the program will fund one post-doctoral fellow, one doctoral student, one master’s student, and one summer student. Trainees will benefit both from research placements in the organizations of our community-based partners and from direct interaction with end-users and community-based organizations. Further, we expect to provide support funding for three new investigators.
Our collaborative team includes a diverse range of collaborators and community partners representing research end-users, policy makers, program developers, health care providers, regulatory authorities, and health professional colleges. Collaboration has been secured with local, provincial, national, and international partners including, among others, the World Health Organization, Public Health Agency of Canada, Ontario Ministry of Health and Long-Term Care, Federation of Medical Regulatory Authorities of Canada, Canadian Nursing Association, and Connecting Seniors of Canada. In addition, we will utilize policy networks developed via the Canadian Priority Setting Research Network (www.utoronto.ca/cpsrn) and its global counterpart (Global Priority Setting Research Network) in order to link our team with policy makers in the hospital and healthcare sectors. This strategic alliance of researchers and end-users establishes the ideal environment for innovative research activity and proactive knowledge transfer.