Expertise and Knowledge Exchange for the active involvement of the public NIHR Trainees Meeting, Leeds 11 th November 2014

Bec and Derek - a collaboration Bec and Derek Bec Hanley Research adviser Derek Stewart Patient advocate “If you have knowledge, let other light their candles from it.” Margaret Fuller 19 th Century Journalist and Critic

Outline of session 1. Changes in the landscape for public involvement 2. Potential areas for discussion – Key features of involvement – Added value – Elements of success – Next challenges – Continuous improvements But, what do you want out of the session?

Changes in the landscape Research Active Nation Breaking Boundaries Review

Promoting a Research Active Nation Citizens defining health outcomes that matter to them helping to identify and deliver research of the highest quality able to chose to take part in research able to use the evidence on which their care is based having a good research experience and recommending it to others. Simon Denegri Director for Public Participation and Engagement in Research

Breaking Boundaries Review Themes: Progress has been made What stops public involvement Doing public involvement differently How do we do it in future Where in 10 years time

What have you been doing? What are you doing? Who did you involve? What approach did you take?

What difference has involvement made? PlanningDoingTelling e.g. Eliciting ideas Prioritising questions e.g. Improving inclusion/exclusion criteria More relevant outcome measures Clearer language and explanations e.g. Speedier and better targeted recruitment Greater transparency More grounded e.g. Help to inform the public Ensuring results of research are implemented

Learning from experience What were the critical factors? What didn’t go well? How could NIHR help in future?

Keeping a Record Research – the questions, measures of inclusion/outcomes, language Researchers – thinking, attitudes, knowledge Public – health & wellbeing, skills, understanding Organisation – planning, approach, communications Reporting – telling the story, mention in posters and publications How have you described and recorded the benefit and learning in terms of: the research, researchers, public and organisations involved?