Hilary is responsible for the delivery and quality of our work, and the strategic direction of the Foundation.
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After presenting a case study on our Birth Defects Health Needs Assessment Toolkit at a recent CSaP and European Commission-led meeting in Brussels, I noted that ours was the only concrete example of a framework for policy-making based on diverse sources of evidence. Although the entire meeting was focused on 'Getting Evidence into Policy Making in the EU', there was surprisingly little formal recognition of the breadth and variety of evidence required, which goes far beyond the pure integration of evidence from basic science, or of the somewhat messy processes of policy-making.
At PHG Foundation, we understand that it is crucial to systematically incorporate clinical research and population sciences with the core science – and all against the ethical, legal, social and regulatory background and the practical realities in which health services operate. Although this knowledge brokering was theoretically supported in Brussels as an important foundation of policy-making, what was not recognised was the near impossibility of finding funding for such work.
This presents a Catch-22 situation for genomics. For despite the fact that policy-makers need precisely this kind of broad-brush evidence to make an informed decision, and given that there are multidisciplinary groups ready and willing to take on the laborious work, they are rarely the sort of groups that attract high level funding.
The Brussels meeting also crystallised the wider complications of using evidence in such strategic planning. Policy-makers often seek to encourage or even demand innovation, but they also want a solid evidence-base to support such a proposal. What they do not always understand is that when you innovate, you do not always know the outcome or the range of outcomes that might arise. It is necessary to imagine futures and look for the range of effects which the innovationcould produce. This is a difficult balance to strike, and may mean that some projects never make it off the ground. But sometimes, as with the100,000 Genomes Project, we must be prepared to make a leap of faith.
It is also important to appreciate that, while the first introduction of an innovation may initially disappoint, it can usually be improved by iteration. These processes must be captured and evaluation factored into the project from the outset. It is essential, therefore, to start mapping out the different futures for WGS and genomics and start to think what success would look like from a variety of perspectives. At PHG Foundation, we are already thinking about the needs of different stakeholder groups. NHS providers, commissioners, patients, the public, and even the commercial sector, will all have a vision of where they hope it will take them and, indeed, harms that they wish to avoid. We believe that plans to evaluate the 100,000 Genomes Project and the wider introduction of genomic medicine ought to be developed now.
Finally, we need to think of creative ways to start bypassing that Catch-22, so that systematic analysis and synthesis of evidence from many sources, knowledge brokerage and an upfront commitment to evaluation are not left out of the strategic planning process. This will help ensure that genomics makes the leap from ‘innovation’ to an essential commodity for health, recognised and valued by all.
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