August 30th 1999

The Vision Health Research Council (VHRC) is a private Foundation devoted to promoting Vision Health Research.  It holds the fundamental belief that research is the cornerstone to knowledge and teaching and consequently to the education of the best possible Health Care Providers.  It supports a number of projects in the pursuit of it's objectives, one of which is the CIHR Vision Project (CIHRVP).  This project stems from a request to VHRC by the President of the Medical Research Council and Interim Governing Council of CIHR  to present, in support of the CIHR, a project showing the need for a Vision Institute.

This has developed into a vast campaign to secure for Vision Research the most favorable position possible within the New Deal resulting from the creation of the CIHR by Government in Febuary 1999.  Since, in the CIHR Vision Project, VHRC has  oriented its activities in three main directions, 1) remain informed, 2) gather support and 3) be ready to present a Vision Project to CIHR when the moment comes.

1) Remain informed
It is essential to be kept informed as best as possible.  CIHR is a nascent venture with cohabitation difficulties betwen the Councils and Health Research Organisations that make it up.  It is for the moment tangled up in the legal complications defining the details of it's structure.  We still  do not know what it will exactly be, how it will function and who are the individuals who will manage it.  For economic reasons, the Interim Governing Council still carries the initial suggestion limiting the number of Institutes to 15 and having vision within one of these.  This seems to simply crown the past rather than reveal the renewal expected from the CIHR.  So, at this point, remaining connected and informed is essential.

2) Gather support
Whatever Research Project we eventually present, its scientific quality will of course be an essential prerequisite.  But, as for the obtaining of CIHR from Government, our position in the CIHR will really be determined by the public support we can gather.  Mobilising prominent public figureheads, stong political support and thousands of patients' signatures on a petition will have more weight in the end than the scientific content. This has been clearly stated to us by the President of the Interim Governing Council of CIHR himself and a number of members of the IGC.

VHRC has made an effort to obtain  the widest possible support for our cause, prominent investigators, research groups administrators and essential Stakeholders in Vision health and disease in Canada who individually and collectively represent  all malor groupings: Patients; the Canadian National Institute for the Blind (CNIB), the National Coalition for Vision Health (NCVH), Care providers;  the Canadian Association of Optmetrists (CAO) the Canadian Ophthalmological Society (COS), Academia; : the Association of Canadian University Professors of Ophthalmology (ACUPO), and the Schools of Optometry of Montréal and Waterloo, Private  Foundations; the Baker Foundation, la Fondation des Maladies de l'Oeil, the RP Foundation and the Sherbrooke Symposium Foundation,
 Industry; Medical Devices Canada (MEDEC), and finally, Investigators; individual investigators who have supported Sherbrooke Foundation from the onset, the Medical Research Council (MRC), the Réseau de Recherche en Santé de la Vision du Fonds de recherche en santé du Québec (FRSQ) and finally,  VHRC has mobilised some 400 canadian investigators as its collaborating members.

VHRC looks forward to any new collaboration. It is presently seeking the support of influential individuals in the political and financial worlds.  These with wide support from the public are essential to succeed in our project.

3) Preparation of  the CIHR Vision Project document
It is immaterial at this point to decide on requesting for Vision Research a selfstanding Institute or be part of another. This decision will come later and depend on circumstances. The preparation of a Vision Project for the CIHR remains our most formidable task. It has to be a collective effort; the VHRC alone is absolutely incapable of achieving any significant success.

What makes it yet even more difficult is the necessity of conforming to the guidelines stemming from the CIHR mandate.  To succeed, our Project can not be the summary of each and every investigator's dream of the ideal future. It has to respect the CIHR model.

This model has three fundamental characteristics.  The proposal must be collaborative.  These collaborations should be pan-canadian, include  interdisciplinarity and very specially bring together  clinical and basic research.  The Proposal must be inclusive. Research is to cover the whole span of Health Research, namely, Evaluative Research, Clinical Epidemiology and Data Based Decision Making  as well as Basic Research.  Humanitarian preoccupations are to be addressed  as well as pathophysiology, prevention, diagnosis, treatment and rehabilitation.  Finally, all stakeholders in health questions including Private granting agencies, Patients Organisations and Industry are called to play an important role in the the choice of Priorities, the devising of research  programs and be present in the administration of this research.  These are specifically the mandate of CIHR and the conditions laid down by the minister for the continuing support of CIHR.  

IMPLEMENTATION
In the preparation of our Project there are three essential aspects to deal with and only the collaboration of investigators will allow any true adequacy and they are asked to take charge.  We will have to 1) determine our research capacity, 2) document the socio-economic impact of vision health and disease and 3) prepare the research content of our Project.  All three are the major components of a successful bid.  These three aspects will be worked out by three Task Forces.  Representatives of these Task Forces and members of VHRC will constitute the Planning Task Force that will catalyse the venture, collect data and help prepare a final document.

Research Capacity Task Force
We have to determine our research capacity. This appears to be a sign of credibilty for MRC, a dominant figure of the IGC.  What is identified as Vision Research is ridiculously inadequate.  The Task Force will communicate with all investigators to collect the necessary data. The task has been divide in two and for the moment, Dr. Helene Boisjoly (clinical research) and Dr. Martin Steinbach (basic science) are responsible for setting up the TF.

Socio-economic impact Task Force
This TF is responsible of collecting all data that show the importance of the impact of the blind and visually handicaped segments of the canadian populations.  The best possible cost evaluation of vision health maintenance and disease need to be known to make our case.  Epidemiologists and CNIB will have to help here.  Nobody has taken responsibility of this TF for the moment.

Research Content Task Force
This can only be dealt with by the vision investigators.  Basic as well as clinical research must be represented, all major domains should be interested in participating. All that want to collaborate  or remain informed, from all regions and departments and centres are welcome.  This TF will have the responsibility of formulating in the terms of the CIHR concept and mandate,  a winning set of priorities and programs.  The Project will have the obligation of proving that stakeholders have been consulted and their opinions respected.  For the moment here also some have voluntered: Steve Barnes, Isabelle Brunette, Élise Héon, Raymond Leblanc, Jack Rootman   and Graham Strong. Dr. Leblanc  is responsible for setting up the TF.

Planning Task Force
The Planning TF will do two things, first, coordinate the preparation of the Project and two, keep all participants automatically informed on the evolution of the situation.  Each TF should designate a member to participate in the planning TF along with the representative of VHRC.

We have welcomed suggestions that better contact should be maintained with two particular groups of investigators, those of the west coast and the Quebec FRSQ Network.  Dr. Rootman (West Coast)  and Dr. Casanova (Québec Network), allready Governors of VHRC, will respond to this need and be responsible for providing contact and communications.  We welcome their help and count on their presence.  

Participation
All investigators are invited to participate actively.  Contact can be made with anyone in VHRC or in the TFs (see list appended).  For the moment the interim responsible persons will initiate activities.  However each TF will recruit members and accept all who want to participate.  TFs should structure the way they think best to accomplish their tasks.  It is suggested that each TF use a Web Page to post its communications and documents.

The minimal collaboration expected from all investigators is to answer urgently the call of the Research Capacity Task Force.

Deadline
We are not informed of any precise deadline.  We suppose that we should be ready to file our proposal before the definition of the various Institutes is done by the IGC.  Subcommittees have been formed to define the numbers, structure and content of the Institutes and come with a proposal to the IGC.  However the various Councils have devised programs to help study "proposals" of participation in CIHR and given them one year to make report.

Practically, we most probably should have a draft document ready, with the available data at the time, for the end of September.  If needed we could use it as is then or otherwise continue working to refine it progressively as information rolls in.  

IN CONCLUSION
Defining our Research Capacity, documenting the socio-economic impact of Vision Health and Diseases and formulating an adequate research content are essential elements that can only be provided by the investigators in Vision Research in order to succeed with our CIHR Vision Project.  Collaboration of the investigators is the key.
 

Dr. Jean Réal Brunette
President,  VHRC
August 30 th, 1999