The Use of Antivirals for Prophylaxis: Deliberative Dialogue Process

Final Findings Report

PDF Version (13.31 MB, 297 pages)

Table of Contents

• Acknowledgements
• Executive Summary
  • 1. Introduction
  • 1.1 Research Context
  • 1.2 Dialogue Process
  • 1.3 Description of Citizen Participants
  • 1.4 Survey Results – General Public (Recruitment Phase)
  • 1.5 Citizens’ Initial Thoughts About Pandemic Influenza
  • 2. What Participants Told Us
  • 2.1 Dialogue Using Three Approaches
  • 2.2 Common Ground
  • 2.3 Identification of Priority Recipients
  • 2.4 Support for Overall Policy Direction
  • 2.5 Other Survey Results – Information Sources (Citizens and Target Groups)
  • 2.6 Impressions of the Consultation and Considerations for Decision-Makers
  • 3. Views of the Dialogue (All Sessions)
  • 3.1 Participants’ Point of View
  • 3.2 Researcher’s Observations
• Appendix A: Citizen Version of Recruitment script
• Appendix B: Citizen Version of Facilitator’s Script
• Appendix C: Citizen Version of Survey questionnaires
• Appendix D: Dialogue session dates
• Appendix E: Citizen Version of Workbook
• Appendix F: List of Stakeholder Participants
• Appendix G: List of Target Group by Occupations
• Appendix H: Privacy Consent Form
• Appendix I: Quebec Report

---

Acknowledgements

Although the ultimate responsibility for any study errors rest with the authors, we would like to extend our thanks to the many people who assisted with the project. In particular, we would like to express our sincere appreciation to the citizens and members of target groups who gave up the better part of a weekend in the weeks leading up to the holiday season or in January to participate in these dialogue sessions. We would also like to thank the representatives of key stakeholder organizations who gave up a day and a half of their very busy schedule to provide input. This study would not have been possible without their dedication and commitment to public policy and the health of Canadians. We hope that this report is an accurate reflection of the views and opinions they put forth.

We would also like to thank the Chief Medical Officers of Health, their designates, and other provincial resource personnel who took time to attend these sessions to provide detailed and accessible information about pandemic, antivirals, vaccine, and so on. The very considered discussions held by citizens, individuals working in potentially targeted occupations and representatives of stakeholder organizations would not have been possible without their expertise and patience in answering any and all questions to the best of their ability, with the information that is known to date.

Executive Summary

In February 2004, the Government of Canada and provincial and territorial jurisdictions developed the Canadian Pandemic Influenza Plan for the Health Sector. The Plan outlines a strategy to deal with the impact and implications of a potential influenza pandemic. A national policy recommendation is being developed on the prophylactic (preventative) use of antivirals during a pandemic. The Council of the Public Health Network (PHN), through the Public Health Agency of Canada, has commissioned the current public consultation to help to inform their recommendations. Specifically, the purpose of the consultation is to foster a dialogue among randomly-selected citizens to develop and prioritize potential decision options on the use of antivirals for prophylaxis. The dialogue process offers a way to gain insight into citizens’ values and the “common ground” developed on the use of antivirals for prevention when given the opportunity to learn about the issues and reflect on and discuss them. In addition to the dialogue results, the Public Health Network Council reviewed other considerations, including separate reviews of legal, scientific, economic and ethical issues related to the use of antivirals for prevention; the technical feasibility and logistics associated with timely distribution of antivirals; and, a review of international experience with this issue.

This report presents the results of eleven dialogues: seven dialogues conducted with citizens; two with stakeholders; and two with those in occupations that may be targeted for antivirals for prophylaxis, to explore the values and principles that Canadians believe should guide decisions about providing publiclyfunded antivirals for prevention during an influenza pandemic. Across the sessions, there was a high level of satisfaction with the dialogue process expressed informally and during participants’ closing comments, as well as on the evaluation forms. Participants indicated that they had learned a lot, enjoyed the discussion and appreciated the opportunity to participate. By their questions and comments, participants demonstrated a reasonable grasp of the technical material and of the dilemmas at hand. Their comments overall were insightful and thoughtful.

In essence the dialogue sessions were designed to seek views and considerations from citizens, stakeholders and target groups on three key questions: should governments provide publiclyfunded antivirals for prevention during an influenza pandemic and, if yes, under what conditions, and specifically to whom, should antivirals be provided. The dialogue used a number of tools to elicit these views and to determine the underlying values and principles by which citizens resolved the dilemmas and tradeoffs inherent in these decisions. An information session and the ongoing input of medical experts during the sessions proved invaluable to ensure that participants had the best information available to inform their choices.

In examining the discussions across the seven dialogue sessions, shared goals and values are visible, often articulated in the “common ground” that was presented and tested with participants. Other goals and values emerged in the latter parts of the day.

The qualitative discussions from the deliberative dialogue process, as well as the accompanying quantitative survey data, provide a sound design for obtaining citizens’ input on the provision of publicly-funded antivirals for prevention. The survey administered at the recruitment stage shows few differences between the general population in the dialogue centres and dialogue participants. While the dialogue sessions (and also the quantitative results) are clustered (i.e., drawn from seven centres), the consistency of results across the sessions is encouraging and suggests that the findings are likely a good approximation of the views of most Canadians when they have the opportunity to work through the issues.

Results

Participants generally favoured governments proceeding with a program to provide antivirals for prevention, in support of three goals which emerged as important for them: to ensure that normal societal operations are maintained; to minimize public fear and panic; and, (in part through the accomplishment of these first two) to reduce serious illness and death during a pandemic. This support was stronger in the citizen sessions (Vancouver being more mixed) and weaker among target group and stakeholder participants (who were more divided). Among those supportive there was an expectation that, if the means are available to achieve these ends, governments should undertake to use them to protect citizens.

While there was considerable discussion and divided views about priority recipients, the clear choice (and easier for participants to make) was for health care workers with close patient contact, as the group that would be most needed in the defence against a pandemic and the most exposed to the virus by virtue of their occupation. Whether or not their families should be extended the same consideration was a topic of considerable debate, as was the extension of antivirals to health care workers without close patient contact. In the case of the former, those most in favour argued the same considerations: the need for health care workers to be available and at their best when needed; and that the same responsibility to protect those on the front line should also extend to the families that they would expose by virtue of their work. With regard to health care workers without close patient contact, those in favour argued that they would also be exposed in their work setting and that the interdependence of functions in a hospital (and other health care settings) argued for the protection of all individuals doing those jobs.

There was also considerable discussion about the need for antivirals for those in emergency services. Many argued that people in these functions should be protected in order to keep society functioning, while others argued that this may not be required given the rate of absenteeism and time interval of maximum expected risk before a vaccine would be available. Even among those in favour there was often discussion of limiting the application of antivirals to only those individuals that could not be replaced, and only for those functions that would be most critical. There was even greater divide with regard to essential services, with some arguing the need and others suggesting that again, the rate of absenteeism was not so steep as to make prevention critical, given that antivirals would be available for treatment and vaccines would be available within a period of time. It should also be noted that the distinction between emergency and essential services was often unclear throughout a number of the sessions.

The most vulnerable, including children, those in institutions, the chronically ill and elderly were often argued as the third most prominent and likely candidates for protection, however, there was considerable diversity and divergence of opinion on this segment of society and the need for this method of prevention, as well as the practical considerations of identifying these individuals and getting the drugs to them in a timely and efficient manner (which were not deemed to be significant considerations for the other groups).

Central to all discussions about priority groups was the delicate balancing of considerations for the depth of illness and disruption in the lives of Canadians (individually and at a societal level), the difficulty in determining who was most vulnerable and who was most valuable, and the efficacy, cost and side effects. In most sessions, and for many of the priority groups discussed, there was argument made for limiting the use of antivirals for prevention to the fewest individuals required to safeguard society the most from the illness and disruption. In a few sessions (although far from all) there was additional discussion of planning for the use of antivirals for prevention for the smallest and most strategic period of time (i.e., as a bridge from the start of a pandemic until the availability of a vaccine or even shorter).

As became evident in the dialogues, pandemic planning and its execution are areas where government leadership is expected and where public expectations of government are high. Governments are seen to be well-placed to communicate information about a pandemic to the public and to guide individual action. Governments were clearly preferred to oversee a stockpile of antivirals for prevention, both because governments are able to secure advantageous pricing due to economies of scale (an efficiencyrelated argument) and individuals simply indicated greater confidence that governments would undertake a fair and sensible distribution process (as opposed to a less regulated or individual/private sector-based approach).

On the other hand, in all the dialogue sessions, participants raised concerns about the decision-making process itself with respect to distribution. If there are to be priority recipients, who will decide who they are? Participants themselves struggled enormously to identify and prioritize groups. They wondered how decision-makers would ultimately decide the “value” of different groups of citizens and the risks for governments when they do. Participants were very attuned to the ethical complexities of the issue and a few wondered whether the benefits of antivirals outweighed the potential quagmire that could result. One central theme that was discussed in most sessions was the need for consistency. People wanted the decisions to be the same across the country, (e.g. if it was HCWs as priority recipients, it should be HCWs everywhere). The only nuance to this was that in some cases the people providing the service may be different, (e.g. since there are few family doctors in Iqaluit, nurse practitioners or others would provide prescriptions and therefore some tailoring of priority groups may be required to ensure consistency of service and protection related to the pandemic).

Consistent and Central Emphasis on Public Education and Need for More Research

At the end of the day, the provision of publicly-funded antivirals for prevention and the accompanying designation of priority groups must inspire the trust and approval of Canadians overall. The frame of reference for decision-making that emerged during the course of the citizen dialogues emphasized the following values: practicality/efficiency/pragmatism; fairness and equity; compassion; public engagement/awareness; role of government (with minimal government involvement not being a viable option on its own).

With respect to the value of public engagement/awareness, each of the sessions included a number of themes underscoring the fact that public understanding, acceptance and support is predicated on good communications of the issues. Citizens across all regions indicated the importance of Canadians staying informed; a message emerged during the dialogue discussions and was also often reiterated in participants’ closing comments. Public education itself was raised in a number and variety of contexts. Participants saw the need for public education even prior to the occurrence of an influenza pandemic about pandemic planning, preventative or general public health measures and individual emergency preparedness.

In addition, citizens talked about public education during an influenza pandemic. Many participants highlighted the need for public education to minimize public panic during a pandemic, using information and awareness as a way to avoid societal disruptions during a period of uncertainty and fear.

Public education was further raised in the context of ensuring that the public is able to understand and support the decision to stockpile antivirals for prevention and their selective distribution to priority recipient groups – that is, “selling” the strategy for the distribution of antivirals. The goals and values that emerged in the dialogue provide good guidance as to the rationales that citizens find convincing in pursuing a course of action in this area – e.g., provision of publicly funded antivirals guided by efficiency, fairness and compassion. The results of the dialogue sessions emphasized the theme of consistency – whereas there was support for, for example, HCWs as priority recipients, it was considered important that this criterion be the same across regions (with some flexibility in rural/remote areas or in an outbreak-based strategy). Similarly, participants generally objected to inequities based on income. The dialogue also indicates areas where citizens’ concerns must be reasonably addressed (e.g., efficacy and safety).

A final implication of the dialogue sessions has to do with the safety and effectiveness of antivirals themselves. During the course of the dialogue session, many participants asked questions about antivirals that, at this time, simply cannot be answered definitively. The research base is quite limited and, of course, prior experience with the use of antivirals under pandemic conditions non-existent. In their closing comments, many participants urged that significant progress be made on the safety and efficacy of antivirals to improve the confidence of decision-makers and the general public in the appropriate use of antivirals for prevention.

Strong Role for Government

Across the different sessions an underlying theme was the strong role for governments to play in planning, coordinating, educating the public, researching and working with others to be prepared for a pandemic. Throughout the results described in this report the reader will find, more implicit than explicit, the argument made by citizens, stakeholders and target group members alike the important role for government in leading and being seen to be leading the efforts in pandemic preparedness (with regard to the use of antivirals for prophylaxis as well as in broader planning for a pandemic).