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Collaboratory in Pandemic Ethics Knowledge Generation and Dissemination

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."1 Derrick L. Cogburn has further defined a collaboratory as "a new networked organizational form that includes social processes; collaboration techniques; formal and informal communication; and agreement on norms, principles, values, and rules.2 The concept of a collaboratory originated in information sciences and has been successfully adapted by bench sciences. A collaboratory model is adaptable for conducting research with multiple, geographically-dispersed collaborators in ethics and policy.

Addressing the complex ethical challenges in pandemic preparedness requires contributions from, and integration of, disparate domains and discourses. The list of possible research methods includes conceptual generation (ethical theory, philosophy, social sciences); multiple methods of collecting and analyzing data embracing qualitative (document analysis/ qualitative research) and quantitative traditions (e.g., surveys); consensus building strategies (e.g., Delphi); and public engagement techniques (e.g., citizen councils, electronic town halls, research-based theatre.)

To successfully integrate these methodologies, we will create a pandemic ethics collaboratory in which members of the research team, collaborators, end-users, and 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."3 These concepts are applicable to a process that actively involves end users in design processes to help ensure the research program meets their needs and is usable.

The collaboratory will consist of a number of components designed to meet the three objectives of the grant, as stated above. These components are as follows:

    Objective 1: Knowledge Generation
    • Consensus Dialogues
    Objective 2. Public Engagement
    • Citizen Council
    • Research-Based Theatre
    • Social Networking Tools (Facebook, YouTube, MySpace, etc.)
    • Web Portal
    Objective 3. Capacity Building
    • Mentorship Pods

Outcomes and Relevance of Research

The outcomes of this research will: (i) contribute to understanding the ethical basis of pandemic planning; (ii) inform health policy at the federal, provincial, and municipal levels; and (iii) contribute to pandemic planning efforts internationally. It will link directly to the stated CIHR objectives to address scientific questions and problems related to influenza for pandemic preparedness such as social and ethical issues and knowledge translation issues related to pandemic outbreaks such as risk communication and infection control. The CanPREP proposal directly addresses the relevant research areas of public health and health care preparedness, including surge capacity, optimal use of antiviral drugs and vaccines, and preparation for a pandemic. In sum, the proposed research will significantly enhance Canada’s preparedness and research response capacity to an influenza pandemic.

Each program component listed above will be described in turn below.

Objective 1. Knowledge Generation

Consensus Dialogues
The consensus dialogues will constitute the largest component of the team grant. It consists of the following five phases:

Phase 1 - Pre-survey: Prior to the initial stakeholder forum, participants will be carefully surveyed to obtain their priority ranking of research questions from the list of unresolved questions distilled from the literature. Participants will be asked to indicate priorities from the perspective of their organization and from their personal perspective and to indicate differences wherever they exist. In addition, they will be asked to identify any questions unique to their organization that would benefit from collaboratory involvement.

Phase 2 - Initial Stakeholder Forum: The next phase will consist of a research agenda-setting forum. In this full day forum, all participants in the team grant (investigators, collaborators, end-users, and trainees) will meet to formulate the research agenda. It should be stated at the outset that the parameters for the agenda setting will be informed by three key elements, but otherwise it will be an open process for stakeholders to provide direction. The three key elements will be:

  • Results of a national survey conducted by investigators examining Canadians' perspectives on the issues of priority setting, duty to care, and risk communication;
  • Literature review outlining the key unanswered questions in each domain; and
  • Results of the pre-survey.

This one-day forum will consist of facilitated deliberative discussions involving plenary discussion, break-out groups, and circle-within-circle discussions. The forum will be audio- and video-recorded and archived on the web. All participants will provide informed consent to participate in all phases of the process. The day will be organized into the following sections:

  • An initial common plenary session with an introductory lecture providing an overview and a report of the pre-survey [1 hour]
  • 3 independent parallel break-out groups: one group for each of the 3 key ethical thematic areas (priority setting; duty to care; risk communication) [1 hour]
  • A "circle-within-circle" focus group in which representatives of each of the 3 key thematic areas will share that group’s perspective from an inner circle with all others listening from the outer circle. Each sector will have an opportunity to participate in the inner and outer circles [3 hours]
  • Final plenary session to summarize discussions and finalize the research agenda [1 hour]

The priority setting forum will be a research component in and of itself. All focus groups will be led using discussion guides and will be audio- and video-recorded and professionally transcribed. We will use Facilitate Pro communication software for synchronous data collection and process management for live input capture from stakeholders in focus groups, circle-within-circle sessions, and the plenary discussion. We will utilize hand-held palm devices to poll all participants for feedback and responses using Pendragon software (specially designed software for hand-held devices). Results will be available immediately in Excel spreadsheet format. We will use Crystal Reports reporting software to provide a real-time connection with wireless systems so that real-time data from the poll can be sent to our server for storage and future analysis. In concert, these technologies support the entire cycle of decision-making from brainstorming through to action plan print-outs regarding the agreed-upon priority issues.

The data analysis will be organized into two phases: open and axial coding. In open coding, the data are read and then fractured by identifying data chunks related to a concept or idea. In axial coding, similar ideas and concepts are organized into overarching thematic categories. We will then further develop themes using illustrative verbatim quotes. The analyses are facilitated by and culminate in writing, which serves as an important tool in formalizing concepts and making explicit the assumptions that influence data interpretation.4

We will address the validity of the findings in three ways. First, to maximize comprehensiveness and diversity of the data, two data sources will be used (video recording/transcripts and observation notes). Second, a multidisciplinary team of scholars will participate in the data coding to ensure accuracy and check inappropriate individual biases. Third, all research activities will be rigorously documented to permit current and retrospective critical appraisals of methods. This will include member checks, detailed records of focus group discussions, notes of meetings prior to and following the one-day event, as well as communications and conceptual processes.

By the conclusion of the day, a comprehensive research agenda will have been generated based on stakeholder deliberations and the ultimate prioritization of research questions and topics.

Phase 3 - Collaborative Research Program: After the initial forum, the investigator team will create a work plan in conjunction with end users and collaborators. Given the deliberative, consensus-building design of this research method, it is not possible to predict with certainty which questions will have been ranked as priorities by participant stakeholders during the forum. Indeed, to make such predictions would be to presuppose the outcome of the stakeholder forum. It is expected, however, that the questions will be answerable with the human resources and research techniques available in the collaboratory. It is envisioned that a mixture of research techniques will be employed including, but not limited to, literature review and conceptual analysis, telephone and/or postal surveys, and qualitative modalities (including comparative case studies, Delphi studies, focus groups, and key informants studies).

Thematic working groups will conduct research at the U of T, based out of the JCB and in the end-user organizations. We will use a web-based secure password protected and encrypted intranet platform to share research tools and data files. We will use web-based communication technology (audio/video conferencing and Breeze meeting software) to allow communication within and between working groups.

Phase 4 - Consolidation Forum: The collaboratory group will reconvene after the research has been completed to share the research results of the grant with all investigators and end-users. The key research findings will be summarized and tailored dissemination strategies will be formulated. In addition, an evaluation of the collaboratory process will take place to determine the extent to which end-user needs were met, the research results were relevant to their organizations, and whether the process added value and assisted in the clarification of ethical and policy challenges in pandemic preparedness.

Phase 5 - Knowledge Translation and Dissemination: The final phase of this component of the Team Grant will be the dissemination of the research results through active channels with end-user groups/collaborators. Additional information on the dissemination strategy is found below.

Objective 2. Public Engagement

Citizen Council
Public policy decisions in any pluralistic democracy should consider the needs, values, and attitudes of its citizens. As it pertains to health care policy, it has been well established that the values and perspectives of policy makers and health care professionals differ significantly from those of patients and lay citizens - therefore, direct public engagement is necessary 5-8. Additionally, public participation can lead to better understanding, greater trust and wider popular support for decisions and, ultimately, an enhanced empowerment of citizens.

In the context of complex value-laden policy decisions, public engagement enhances the quality of decisions by bringing to the deliberations the full range of relevant value-considerations.8, 9-12 In addition, an open and inclusive process of policy deliberation, involving "ordinary" citizens, promotes greater approval of controversial decisions and generates greater social cohesion. As well, it improves the legitimacy of the decision-making process.11, 13-20 At present, however, exactly how public engagement works (or should work) is not well established.

The collaboratory will engage the existing Citizen Council of the Canadian Priority Setting Research Network (CPSRN) which is directed by Dr. Doug Martin (a co-investigator on CanPREP). The Citizen Council will convene in the third year of the program and provide additional deliberation on the results of the collaboratory.

We will select Citizen Council members that approximate the age, gender, educational level, socio-economic status, ethnic background, and health status distribution of the citizens of Canada. Exclusion criteria will include: healthcare professionals, employees or directors of pharmaceutical companies, individuals owning significant equity in pharmaceutical companies, members or employees of political action groups (e.g., patient advocacy groups), elected officials, MOHLTC employees, and individuals affiliated with marketing research or advertising, public media, or public relations companies.

The meeting proceedings will be summarized in a written report. Facilitators will prepare the first draft and Council members will be invited to submit revisions. The report will include a detailed analysis of why members felt the way they did, as well as how their views changed as a result of their participation in the meeting. Summaries of the presentations from expert witnesses, including question-and-answer sessions, will be included as appendices.

Research-Based Theatre
As noted above, we will reflect initial research findings back to the original stakeholder forum participants in a follow-up stakeholder meeting in 2010. At this meeting, we will employ research-based theatre as an innovative method of knowledge translation, risk communication, and public engagement. A post-doctoral fellow with significant experience and training in research-based theatre will take the lead on this component (Kate Rossiter, currently a PhD student of Ann Robertson who is a CanPREP team member) under the supervision of Prof. Robertson and Tiffany Jay (end-user) who currently serves on the Board of Directors of a Toronto-based theatre company.

Over the past decade, there has been a shift in applied health research towards the use of performance as a tool for public engagement and knowledge translation.21,22 Performance provides a means to move research findings into broader spheres, making research accessible to new audiences that might not have otherwise engaged with scholarly activity and received and commented on new knowledge.26

To date, research-based theatre projects have addressed a variety of health related issues. Performance has been used both for the dissemination of new research findings 24-28 and for the purpose of public engagement 29-34 This innovative means of knowledge translation and public engagement encourages debate and dialogue, and aids diverse audiences in the processes of moral reasoning and ethical decision-making.35 The performance at the final stakeholder forum in Year 3 of the project will be video-recorded and made publicly available on the CanPREP website. Hard copies on DVD will also be made available to all collaborators and end-users to distribute to their members and affiliate organizations/partners.

Social Networking Tools
Web 2.0 has introduced new electronic tools and mechanisms by which individuals can communicate with each other about health issues. The use of electronic platforms such as Facebook, YouTube, and MySpace provide powerful mechanisms by which the public can discuss health concerns.36

We believe that, in the context of a pandemic, these social networking tools will be particularly critical. As individual contact is restricted (e.g., quarantine), citizens will contact and communicate with each other by way of these electronic platforms. It will be essential for public health officials to monitor these social networking websites during a pandemic to understand the public's perceptions of risk and understanding of scientific information related to the outbreak

Web Portal
The website will serve two principal functions: (i) host an intranet for communication and sharing of research tools and data within the research team; and (ii) serve as a nexus for communication to the broader public and provide access to online information resources (articles from journals, media reports, relevant policy documents, etc) and update events and activities of the of the CanPREP team.

The web portal will also provide a forum/vehicle for public engagement. We will ask questions and get online responses, provide an open dialogue e-mail address (with someone from our team dedicated to answering emails - demonstrating key ethical element of "responsiveness"). We will provide online live web-casted discussions with experts in ethics, health policy, influenza, clinical medicine, and public health for one hour, once per month.

Objective 3. Capacity Building

See "Education Programs"

References

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2. Cogburn, D. L. (2003). HCI in the so-called developing world: what’s in it for everyone, Interactions, 10(2), 80-87, New York: ACM Press
3. Computer Professionals for Social Responsibility, Participatory Design http://www.cpsr.org/issues/pd
4. Richardson L. Writing: a method of inquiry. In: Denzin NK, Lincoln YS, eds. Handbook of Qualitative Research. London: Sage Publications Inc., 1994.
5. Beierle, T.C., Using social goals to evalutate public participation in environmental decisions. Policy Studies Review, 1999. 16(3/4): p. 75-103.
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21. Rossiter K, Kontos P, Colantonio A, Gilbert J, Gray J, Keightley M. Staging data: Theatre as a tool for analysis and knowledge transfer in health research Soc Sci Med. 2008 Jan;66(1):130-46. Epub 2007 Sep 11.
22.  Rossiter, K., Gray, J., Kontos, P., Keightley, M., Colantonio, A., Gilbert J. From page to stage: dramaturgy and the art of interdisciplinary translation.  Journal of Health Psychology(In Press). 
23. Gray, R., _ Sinding, C. (2002). Standing Ovation: Performing Social Science Research About Cancer. Walnut Creek CA:  AltaMira Press.
24. Gray, R., Fitch, M., Labrecque, M., _ Greenberg, M. (2003). Reactions of health professionals to a research-based theatre production. Journal of Cancer Education, 18(4), 223-224, 225, 226, 227, 228, 229.
25. Gray, R., Ivonoffski, V., _ Sinding, C. (2002). Making a mess and spreading it around:  Articulation of an approach to research-based theatre. In A. Bochner, _ C. Ellis (Eds.), Ethnographically speaking (pp. 57-75). Walnut Creek, CA: AltaMira Press.
26. Gray, R., Sinding, C., Ivonoffski, V., Fitch, M., Hampson, A., _ Greenberg, M. (2000). The use of research-based theatre in a project related to metastatic breast cancer. Health Expectations, 3(2), 137-144.
27. Kontos, P. (2006). Embodied selfhood: An ethnographic exploration of alzheimer's disease. In L. Cohen, _ A. Leibing (Eds.), Thinking about dementia: Culture, loss, and the anthropology of senility. (pp. 195-217). Cambridge: Cambridge University Press.
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29. Mienczakowski, J. (1999). Ethnography in the hands of participants:  Tools of dramatic discovery. Studies in Educational Ethnography, 28, 145-161.
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32. Mienczakowski, J., Smith, L., _ Morgan, S. (2002). Seeing words - hearing feelings:  Ethnodrama and the performance of data. In C. Bagley, _ M. Cancienne (Eds.), Dancing the data (pp. 35). New York: Peter Lang Publishing, Inc.
33. Nisker, J.  (2005) An examination of theatre as a tool for public engagement in policy development regarding genetic testing. Unpublished doctoral thesis, University of Toronto, Toronto, Ontario, Canada.
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JCBUniversity of Toronto Joint Centre for Bioethics
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Toronto, ON  M5G 1L4
CANADA
Funded by the
Canadian Institutes of Health Research