Yesterday the National Institute for Health Research (NIHR) published a new five year strategic plan ‘Promoting a research active nation’ setting out a new programme to encourage public engagement and participation in health, social care and public health research.
Simon Denegri, Chair of INVOLVE and NIHR National Director for Public Participation and Engagement in Research, has written a great post on this. Although the strategy applies to children and young people as well as adults it’s great to see involvement being given some specific mentions, given the increasing interest in this area (see my last post):
- In relation to improving patient recruitment
- Working with young people to help design and develop a range of research ‘apps’ that will help enthuse young people about research and encourage their participation in research studies
- Publishing exemplars of how public involvement has improved patient access to research for children and young people
Following the events organised by People and Research West of England on involving children and young people in health and social care research, I’ve created a new page with information and resources as it seems to be an area in which there is growing interest. One of the issues emerging in my recent conversations on this subject has been the relative lack of published information and ‘evidence’ (in the researcher sense of peer-reviewed and critically reflective accounts) on public involvement with children and young people. So hopefully this page will be a start and additions and comments are of course very welcome!
I also recently gave a presentation a couple of weeks ago at INVOLVE‘s annual symposium for advisory group members, along with Jenny Preston, from the NIHR Clinical Research Network (Children). Jenny and I were invited to start a discussion on ‘involving and engaging young people in research’ and my presentation gave an overview of some of the issues, opportunities and challenges from my experience and discussions at the PRWE fora:
Jenny then followed with a presentation she and colleagues at the NIHR Clinical Research Network (formerly Medicines for Children Research Network) are doing with their young people’s advisory groups. This included highlighting plans to continue the Generation R work they started last year (see films and report).
In the discussions which followed there was a real sense of buzz and momentum around CYP’s involvement in research, both in its own right and as something that could information public involvement in research more widely. More developments to follow – watch this space…