What have people told us about public involvement in research?

Yesterday INVOLVE hosted a meeting of about 100 public involvement leads from across the National Institute for Health Research (NIHR). There are probably nearer 200 in total across the NIHR family.

This was the first time that we have ever been able to bring together people in this way. A powerful milestone.

This link will take you to a presentation myself and Rachel Matthews (CLAHRC NWL) did at the meeting. It gives an overview of the initial findings of the NIHR Strategic Review of Public Involvement ‘Breaking Boundaries:’ http://www.slideshare.net/SDenegri/presentation-to-national-institute-for-health-research-nihr-public-involvement-leads

They are very much initial, headlines as we are still sifting through the mass of views, opinions and evidence provided by people so very generously. We also had a Q&A session with members of the review panel with questions ranging across a wide range of issues – from funding to what’s happening in our networks.

Here are my opening remarks as well which I probably didn’t keep too! I’ve kept the slide numbers in there for reference…….

Good morning everyone.

This is an exciting day.

‘Coming together is a beginning, staying together is progress, and working together is success.’

Henry Ford

This is an important day.

Never before have we brought together public involvement leads from across the National Institute for Health Research (NIHR). In that sense, this is something of a milestone in the development, the maturing of, public involvement in health research.

So, a warm welcome to the Kings Fund and to this first INVOLVE/NIHR Public Involvement Leads meeting.

I would like to take a few minutes to preview some of the key themes for the day. The first one is leadership.

Over the last three years since becoming Chair of INVOLVE and National Director I have visited many of your organisations and institutions and I would like to thank you for your welcome and hospitality at each of these.

Now, in return, it feels important to acknowledge, celebrate and recognise you as leaders, the leadership role you play in bringing people together to make public involvement happen. That role can be exhilarating and satisfying but also isolating, difficult and challenging.

So we are going to spend a great deal of today enabling you to network, think about ways of collaborating with others, and enable us to discuss openly what shared learning and support looks like for you.

One of the reasons why I was very keen to bring us together as a community is a concern that colleagues fulfilling public involvement roles in organisations may not always have the structures and support to fall back on that other colleagues do, that we need to help support your development needs as colleagues. I hope this represents a start.

But we must also knuckle down and begin to tackle issues around cohesion, consistency and continuity in what we do across NIHR. From the language we use to how we support patients and carers appropriately to be part of research.

What does ‘One NIHR’ look like from a PPI perspective?

This is one way of looking at it – you all gathered together in this room. Over 100 of you. But there are in fact 180 people across NIHR and AHSNs who have a public involvement role who could have been with us today and that’s not including colleagues in CTUs, NHS, Universities etc.

But we also have to think about what ‘One NIHR’ looks like from outside, and most importantly from a patient and carer perspective.

Thinking about that first quote I shared with you from Henry Ford and what he did to introduce the first mass produced car, a key challenge for us is how we spread and embed public involvement?

How do we enable anyone to join us and make the contribution to research that they feel most comfortable with? How do we make it easy to drive from a patient and carer perspective, and enable them to drive to where they want to get to?

[final slide]

I hope that you will leave today, enthused and excited about your role, and what we can do together to create and lead the future in public involvement with our patient and carer colleagues.

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