Canada takes a whole-system approach to public involvement in research

Last week, at the INVOLVE meeting for NIHR public involvement leads, a colleague asked me whether our strategic review would get near to a national strategy. I said I was pretty confident it would. Otherwise what’s the point.

You can see a copy of my presentation slides inducing an overview of the review findings here if you are interested:
http://www.slideshare.net/mobile/SDenegri/presentation-to-national-institute-for-health-research-nihr-public-involvement-leads

One of the most exciting but difficult challenges in front of the review panel is how we envision the future development of public involvement. So that it becomes fully integrated across NIHR over the next 5-10 years. So that in terms of impact and benefits the whole is greater than the sum of the parts.

The current focus on the ‘parts’ rather than ‘the whole’ is one of the areas of greatest risk in terms of things like the transition to local clinical research networks (LCRNs). It also supposes that people can, and are willing to, shift their allegiances from one way of doing things to another, just like that.

Here we might learn a great deal from our international colleagues who live and breathe the difficulties of federal systems. Like the Canadians.

For the last couple of years the Canadian Institute for Health Research (CIHR) has been establishing a network of SPORs – it stands for Support for Patient Orientated Research – based around its provinces.

They all share the same aims and principles including a commitment to ‘patient engagement.’ But how they are built is locally defined so as to ensure each reflects the needs of the population and the research strengths in the province. I sit on the international panel that has been reviewing these units as they have developed and I am struck by the sense of community that comes through – in stark contrast to the UK system which tends to emphasise the role of the individual.

Canada – while celebrating the different approaches to supporting research across the country – has also recognised that allowing the different parts to swell or shrink too much in certain areas can only end up in an ill-fitting jigsaw puzzle which is of no value to anyone.

So in public involvement it has spent the last six months defining – with patients, carers and other partners – a national framework for engagement which it published earlier this month. You can find it here:
http://www.cihr-irsc.gc.ca/e/48413.html#a2

Having been involved in this work a little at the beginning of the year – and knowing how challenging some aspects of pulling it together were – it’s great to see it now see light of day. I particularly like the guiding principles on ‘inclusiveness’ and ‘co-build.’

Whatever our differences we have to work off the same page.

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