Minutes: May 18, 2001

Minutes

Public Advisory Group
on
Xenotransplantation

May 18, 2001

Present

Experts
The presentations of experts differ somewhat from forum to forum. It was agreed that this was not a concern. The process that was followed will be documented in the report. It was recommended that we approach the experts to evaluate the process and to complete the questionnaire.

Friday evening survey of opinions
Panelists have said their opinions change throughout the forum weekend. It was agreed that panelists would be asked the question during Friday orientation: Should Canada proceed with xenotransplantation and if so, under what circumstances? This would be done anonymously, in writing, and the reasoning behind it explained to the panelists.

Public participation
There has been general disappointment in public turnout at the forums. Every effort is being made to publicize the Toronto forum. Promotional activities and public interest will be recorded in the report.

Staging of Yellowknife forum
It was agreed that five positions on the citizen panel be reserved for aboriginals selected by relevant organizations. Three expert positions—animal welfare, ethics and transplant recipient—should be filled by Canadians living in the Territories.
 

Deadline
It was agreed that August 1 would be the deadline for submitting feedback. After the Quebec City forum, Sylvia Fanjoy will shift resources to advising key organizations of the deadline and encouraging them to complete the questionnaire.

Aboriginal participation
Laurie Potovsky-Beachell and Dmytro Cipywnyk will propose a strategy to encourage aboriginal involvement in the consultation.

Media interviews
It was agreed that the co-chairs did not have to appear together on high profile media programs but should take advantage of all media opportunities.
 

CPHA secretariat will write the first draft of the final report. They will develop an outline, for PAG consideration, of the proposed content of each section.

There was general agreement that the report would contain the following sections:

Summary (abstract)

• one page
• one line objective
• one line method
• results
• conclusion

Introduction

• why the consultation
• organ shortage
• need for non-human cells
• research advances: a matter of time before request for clinical trials
• legal, social, ethical issues
• leadership of Health Canada

Methodology

• selection of PAG (chart); mandate of PAG
• transparent; open; at-arms-length
• open and representative models (description/referenced)
• description of analysis of findings

Results

• report separately, and in detail, findings of each consultation method

Conclusion

• four to six major issues to bring forward to the Minister based on what Canadians are saying; first one would be if Canada should proceed with xenotransplantation
• future directions
   

• It was agreed that the results would be tabulated separately for each type of feedback and then brought together in the conclusion.
   
• It was agreed that the open-ended responses to the public opinion poll be collapsed to approximately 10 categories. Heather Ross will do the initial collapse using frequency tables provided by the polling firm. It was noted that categories are reasons why people express a certain opinion.
   
• These collapsed categories would then be applied to the open-ended responses of the website questionnaire and mail-in questionnaire. They could also be useful in assessing if there are common themes in the citizen forum results.
   
• The database consultant will produce a dummy file for PAG consideration.
   

• It was agreed that evaluation should first focus on “the big picture” and then to go deeper if time permits. The PAG should be active in the process.
   
• It was also suggested that “lessons learned” from each consultative method would be an important component and involve self-evaluation by PAG members and CPHA. For example, What was successful? What would you do differently and why?
   

There will be opportunities to use project findings in academic presentations and related research. PAG members were supportive in pursuing these endeavours after the report has been released. Several PAG members expressed interest in collaborating with Heather Ross on an article for a scientific journal. Requests for permission to use the information will be submitted to CPHA.