Executive Summary
Detailed Minutes
List of Participants
PRIM&R Survey

November 7, 2002 Regional Meeting

Webpage for May 12, 13, 2003

1. Brock University, St. Catharines
2. Centre for Addiction & Mental Health, Toronto
3. Grand River Hospital/St. Mary's Hospital, Kitchener
4. Hamilton Health Sciences (Hamilton General, Henderson General, Hamilton Regional Cancer Centre, Chedoke, McMaster University Medical Centre, and Children's Hospitals)
5. McMaster University, Hamilton
6. Mount Sinai Hospital, Toronto
7. Ryerson University, Toronto
8. Hospital for Sick Children, Toronto
9. St. Joseph's Healthcare, Hamilton
10. University of Toronto
11. University Health Network (Toronto General, Toronto Western, and Princess Margaret Hospitals)
12. University of Waterloo
13. University of Western Ontario, London
14. Wilfrid Laurier University, Waterloo
15. University of Windsor
16. York University, Toronto

1. Humanities and Social Sciences Federation of Canada: Report to the Social Sciences and Humanities Research Council of Canada on Implementation of the Tri-Council Policy Statement on Ethics in Human Research (TCPS)
2. Tri-Council Memorandum of Understanding web site:
3. Ryerson - Students' Rights as Research Participants and Students' Responsibilities as Researchers
4. Guinea Pig Zero: Webzine of "Professional Research Subjects"
5. PRIM&R :Public Responsibility in Medicine and Research, Training for Institutions (IRB Investigator CD-ROM, IRB 101 On the Road
6. University of Western Ontario: Forms for local and off-site SAE's
7. FDA Guidance on the establishment and operation of Clinical Trials Data Monitoring Committees.
8. InfoEd Software for tracking sponsored research and management of protocols undergoing ethics review.
9. NCEHR National Conference in Ottawa, March 2-3, 2001.
10. Draft Report of CIHR Task Force on Continuing Review (October 2000)
11. CIHR Working Group on Partnerships - Final Report (November 2001)
12. Council of Ontario Universities Response to Ontario's Proposed Privacy of Personal Information Act, 2002, together with COU's cover letter dated March 28, 2002

1. Consider applying for funding to create Canadian ethics tutorial accessible for everyone
2. Arrange for PRIM&R IRB Road show to come to us - issues are the same for most institutions and we could have program customized for us - McMaster will investigate the cost and suggest hosting
3. Share statistics among the Southern Ontario REBs on volume/workload, organization, staff background, frequency of meetings - beneficial for incremental support for ethics committee
4. Suggest common application form since all use same questions
5..Forum needed for universities and hospitals to discuss issues without government funding and regulatory agencies at the table
6. Meet twice a year in spring and fall to be determined via email feedback
7. Approach CIHR about Task Force Report on Continuing Review and what is the status?
8. Clinical trial registry would facilitate communications between institutions involved in multi-centre trials
9. Survey investigators to evaluate ethics review process and REBs to identify areas of improvements and what could be changed

One of the items for further discussion was the possibility of bringing PRIM&R's IRB 101 On the Road to Southern Ontario, have it targeted to a particular audience and share costs among several institutions. Information about IRB 101 and PRIM&R's new Investigator 101 CD-ROM may be found at the web site . Michael Wilson from McMaster has made an initial query with PRIM&R about the cost. For a 1 day workshop (maximum 110 people) targeted to REB chairs, members and administration from a number of Canadian universities and taught by 2 ARENA IRB "On the Road" faculty the cost is approximately $14,000, including base cost (which are between $6,000 to $6,500 U.S) for 2 faculty, seminar room, lunch for all participants and printed materials. However, there are various options in terms of time: 1 day, 1.5 days or 2 days. Also, the degree of customization would have any impact.

The Regional Golden Triangle meeting had 14 institutions so that would be about $900 per institution. Limiting each institution to 8 attendees would put the average cost per attendee at $110. Another option would be an additional half day for researchers so the total would be $18,000.

It can take anywhere from 2 - 4 months from the initial request date to set up an IRB 101 presentation, which would place us in the month of June. However, for an event of this type, late Summer/early Fall would be best in terms of the availability of the key participants.

Research Ethics Board (REB) Chairs and Administrators from across Southern Ontario met at McMaster University on Thursday, January 24, 2002. The above listed institutions attended. In addition, several other institutions expressed an interest in attending, but were unable to send a representative. All in all, the response to this, the initial regional meeting of REBs in Southern Ontario, was overwhelmingly supportive. Virtually all institutions that were invited, responded positively to the initiative.

The day was divided into morning and afternoon meetings of non-medical and medical REBs respectively. There were approximately 20 people participating in each of the two meetings, with a handful of people attending both meetings. About 1/3 of participants attending were REB Chairs, while the remaining 2/3 were administrative personnel, directors or managers supporting REBs at their institutions.

An evaluation form was distributed, but, unfortunately, it did not elicit the anticipated level of response, with only 12 people completing and handing in the form. Comments received were generally favourable. Most respondents found the opportunity to network and share information was useful. Several respondents were pleased to discover that others in the room were faced with the same concerns and obstacles, which was encouraging for them to know that they weren't alone and could feel free to call upon others in the room to offer advice and support. In future, it may be more productive to select fewer topics and engage in more focused and in-depth discussions, possibly drawing upon certain individuals possessing necessary expertise.

Even among the group that gathered for this meeting of REB Chairs and Administrators, the level of expertise and experience was widely varied, with more junior or novice participants gathering more useful information from the meeting than more senior and experienced participants.

However, I believe this initial meeting met the overall objectives, by providing participants with the opportunity to:
- meet informally and network with others of like responsibility in the same field, at a minimal cost and commitment of time;
- engage in interactive discussion, ask plenty of questions and hopefully obtain some answers; and
- identify existing resources and contacts to pursue later on.

It was announced at the meeting that the Canadian Association of Research Ethics Boards (CAREB) will soon launch a web site (hosted by the University of Western Ontario) and that further news (by-laws, interim Board, membership, regional meetings, etc.) will be announced during the March 2-3, 2002 meeting in Ottawa, hosted by the National Council on Ethics in Human Research (NCEHR).

The majority of respondents were in favour of the Southern Ontario group meeting twice a year. Most respondents preferred that REB Chairs and Administrators continue to meet together, but the REBs should continue to hold separate sessions for the medical and non-medical REBs, with an opportunity for overlapping sessions for discussion of common issues, for example, research ethics education, or the social/psychological risks of research.

The REBs associated with McMaster University and the affiliated teaching hospitals in Hamilton volunteered to host this first regional meeting, with the intention of minimizing costs for those attending, so that the host institution incurs any meeting costs, mainly the cost of food and refreshments, plus photocopying and labour for staff involved in arranging the meeting. Participants incur their own travel and parking costs to attend. Assuming that the regional meetings continue in the future, the next institution to volunteer to host a meeting would incur similar costs, and eventually each institution would take its turn in hosting a meeting. A couple of institutions have expressed an interest in hosting a future meeting.

There was no clear cut resolution as to when or where the next meeting would be held. However, there appeared to be a consensus that members of the regional group should feel free to continue to discuss issues and circulate info via email in the interim.

It may become clearer after the Ottawa meeting in March, whether CAREB will provide the vehicle for the Southern Ontario group to continue meeting in the future, or whether we continue in parallel with any regional CAREB-led initiatives.

I look forward to seeing many of you at the NCEHR meeting, March 2-3, 2002.

My thanks go out to everyone who attended and supported this initiative. I especially want to thank the session moderators: Michael Owen from Brock, Bill Marr from Wilfrid Laurier, Cindy Riach, McMaster, Emmi Morwald, McMaster, Marilyn Craven, St. Joseph's Healthcare, Peter McCulloch, Hamilton Health Sciences, and Marie Townsend, McMaster. Also, I extend my appreciation to Jayne Coren from Waterloo and Michael Wilson from McMaster, who each took copious notes to document the discussions. Finally, I thank the Research Ethics Boards of St. Joseph's Healthcare, Hamilton Health Sciences and McMaster University for hosting this meeting.

Regards,
Wendy.

Wendy Hollinshead, Research Ethics Officer
Hamilton Academic Health Sciences Network
McMaster University
Committee on Scientific Development (Rm 3N8)
1200 Main St W, Hamilton, Ontario L8N 3Z5
Ph: 905-525-9140 x22464/Fx: 905-528-8539
Em: whollin@mcmaster.ca

Created by ORS, McMaster February 22, 2002 contact