This paper will report on the development and progress of a Young People’s Reference Group on Public Health which has been established through the collaboration of three organisations. The group is organised by the National Children’s Bureau on behalf of the Public Health Research Consortium (PHRC), with funding from INVOLVE. The PHRC is funded by England’s Department of Health and brings together researchers from across ten UK institutions in an integrated programme of research. The Young People’s Group aims to contribute to the work of the PHRC and the wider public health agenda.

The aims, objectives, activities and outcomes of the group will be shared. This will include how young people were recruited, their reasons for involvement, the methods of involvement adopted, outcomes achieved and the results of the corresponding evaluation being undertaken of the processes and impact of the group. Barriers and achievements will be discussed to facilitate shared learning. This will particularly focus on how young people can participate effectively in research and policy development within public health.

This information sheet includes information on who to involve and how to find the right people.

No. of pages: 2

We are a group of people with learning difficulties called the Learning Difficulties Research Team. The Department of Health asked us to find out all about good ways to involve people with learning difficulties in research. We are doing this by looking at what’s happened in 12 research projects funded by the government through the Valuing People white paper. We want to find out:

1. ?How people with learning difficulties got involved in these research projects.

2. What works and what doesn’t work about involving people with learning difficulties in research.

We are travelling around the country to meet people and ask them questions about their views and experiences. After we finish interviewing people we will put all our information together and publish a report, run a conference and do other things to tell people what we’ve found out.

This is an exciting project because we are the researchers and we are also running the project ourselves. We manage the money, make all the decisions and do the research.

We would like to tell people how we set up, manage and run a proper research project as a group of people with learning difficulties. We would like to tell people how we have learnt to do good, inclusive, empowering and accessible research and how we have overcome challenges and difficulties.

We can do this in the paper format, with questions and discussion or we can run a workshop. Both formats will be fully accessible. The workshop format would focus on what people with disabilities or other `service users’ can do to have more control over research and what non-disabled researchers can do to support us.

Authors: Lisa Thorne, Rachel Purtell and Lisa Baxter

The aim of the project was to find out how much lay people are actively involved in research outside the health service, and to use what was learned to make recommendations for health research.

No. of pages: 26