October 16 2012

Philanthropic Foundations Canada: Symposium 2012
Montreal, October 16th, 2012

Speaking Notes
James Hughes, Graham Boeckh Foundation 

It’s a pleasure to be part of this esteemed panel and thanks to PFC for the invitation to participate.

I want to tell you a short story about a funding collaboration that my foundation, the Graham Boeckh Foundation, concluded only two weeks ago with the Government of Canada and some of the lessons that we learned along the way which may be of interest and use to you.

Tony Boeckh created the Graham Boeckh Foundation a little over fifteen years ago to honour his late son, Graham Boeckh. Graham was diagnosed with schizophrenia at the age of 17. He and his family had spent years trying to determine what he was suffering from then many more years trying to do something about it. In the end, he died of complications relating to the multiple medications he was taking. He was 22 years old.

Tony and his family were profoundly affected by the experience concluding that not enough was known about mental illness in general and how to treat it and support patients with it in particular. The Graham Boeckh Foundation focused its initial efforts in 1990s in the mental health research field funding a Chair in Schizophrenia at McGill, hosting symposia and meetings of mental health scientists and, in partnership with other funders such as the American National Institutes of Mental Health, the Canadian Institutes of Health Research, Alberta Innovates and the UK’s Medical Research Council, sponsoring research into how to achieve greater impact in mental health research.

I think it’s fair to say that over the years, as its network and knowledge expanded, the foundation has become increasingly frustrated with the slow pace of change in the sector. Only 14% of mental health research actually gets translated into clinical practice and it takes an average of 17 years for these few conversions of idea into action to occur. 17 years. This Is Way Too Long.

This is simply unacceptable when we know only one in ten young Canadians with a mental illness gets any treatment at all and of those who are treated, only one in ten of them receive adequate care.

Our foundation isn’t by any means the only body frustrated with this tortoise speed of change. The Canadian Institutes of Health Research, CIHR, launched a bold new strategy two years ago called SPOR for “Strategy for Patient Oriented Research”. SPOR’s focus is to use research to bring about transformational change in the systems that provide health care in the country. CIHR has set aside $100 million to implement SPOR initiatives at $12.5 million for each of the eight categories. Mental health was articulated as one of its priorities among 8 categories of health research. Another interesting aspect of this federal funding was it had to be matched dollar for dollar by the private sector. In other words, CIHR needed to find partners before it could launch a SPOR initiative. Because of our foundation’s existing relationship with CIHR, we were asked to consider being one of their SPOR Mental Health partners.

We were very interested in the potential partnership for two principal reasons. First, they were bringing $12.5 million to the table. Second, and frankly more importantly, they brought the provinces to the table. Their national SPOR steering committee included senior provincial government officials who had given their blessing to the initiative. Because the research was about translation into practice, having the provinces involved from the beginning was key.

CIHR and my foundation began discussions over a year ago about a potential collaboration but there was real worry on our side that, as Tony Boeckh has said, we’d be getting into bed with an “800 pound gorilla”. How did we mitigate that risk?

The first method was to host an international workshop of top mental health researchers to get their collective advice as to where the lowest hanging fruit was in terms of system change needs in the mental health sector. They recommended focusing on adolescent mental health principally because over 70% of mental illnesses can be detected between the ages of 11 and 25.

The second method was the decision to be CIHR’s only partner in the SPOR Mental Health initiative so that there would be equality of interest as opposed to senior and junior partners.

Third, we engaged the services of RAND Europe, one of the world’s leading authorities in the field of health policy, to assist us in preparing for negotiations.

Lastly, we decided on a series of key issues that we felt should be included in the discussions and the agreement with the CIHR. These were fivefold:

  1. The focus of the research project should be in the adolescent space and on implementing what we know to work, not in developing new knowledge;
  2. Proposals should be metric driven;
  3. Implementation should start to occur within the five year term of the project;
  4. Decisions should be jointly taken
  5. A CEO from outside of CIHR would be best placed to lead the project on a day to day basis.

In other words, we wanted to work with CIHR to make sure this was not going to be just another research project that would collect dust on the shelf.

On October 3rd, at the Children’s Hospital of Eastern Ontario in Ottawa, the federal Minister of Health, the President of CIHR and our Chairman, Tony Boeckh, announced the largest adolescent mental health research project in Canadian history. It is intended to do nothing less than change our national practices in identifying, referring, treating and supporting young people experiencing the onset of mental illness or who are at risk thereof. And to do it in a reasonable timeframe…not 17 years.

I won’t go into the other details of why we think this funding collaboration has a real chance of success but suffice it to say we genuinely do. We’re grateful for the opportunity to be so ambitious and to do our part in the fight to improve outcomes for teenagers with depression, psychosis, bi polar disease and other mental illnesses. Thank you.