Welcome to the Shared Learning Group on Involvement
We aim to encourage shared learning about service user and carer involvement between voluntary sector organisations working in the UK. Our main Shared Learning Group looks at involvement across all areas. We also have a Shared Learning Group on Involvement in Research.
Latest Meeting Summaries
Shared Learning Group on Involvement
The main topic for this meeting was local and national involvement challenges. Dave Aldwinckle from RNIB joined us to talk about how the organisation has re-focused and re-organised to ensure the meaningful involvement of blind and partially sighted people in all of the charity’s work, and about the approach to this at a national and local level. This was followed by some really useful discussion. We also discussed involvement in fundraising. We made plans for workshops on diversity and on capturing and assessing the impact of involvement, and lots of people were able to raise issues that they wanted help with – and to get help with them….
Shared Learning Group on Involvement in Research
We spent time reviewing some of the key results from our benchmarking survey. Two members who are relatively new to involvement – Cystic Fibrosis Trust and Autistica – shared their experience to date. Information was also shared about strategies for involvement in research. We discussed ideas for a joint event with the NIHR on involvement and engagement in research.
News & Featured Documents
Patient groups and pharma
Interesting BMJ editorial on patient groups working together with pharma written by Simon Denegri (Director for Patients and the Public at the NIHR and Jeremy Taylor (CEO of National Voices):
27th March 2017
Great piece on the involvement of people with autism in research
James Cusack, Director of Science for Autistica and member of the Shared Learning Group on Involvement in Research, has written a really great piece about involving autistic people in research.
20th February 2017
How not to do service user involvement
Great film from Peter Beresford at Shaping Our Lives on how not to do service user involvement downloadable here
22nd January 2017
Great introductory exercise: Get everyone into small groups. Ask everyone in each small group to choose one of these sentences and complete it. Then get each small group to choose the completed story/sentence they like best and get this person to share their story with the whole group. Thanks Lindsay for sharing this.
12th December 2016
New shared practice paper on involvement in laboratory based research
Much has been written about involving people in clinical, public health and social care research. Much less has been written about involving people in laboratory based research, or in other types of research where researchers have no direct contact with patients or family members.
In this paper we consider why researchers should involve people in laboratory based research, how they might do this and what the impact of involvement in this type of research can be. Lab-based-research-FINAL-10-8-16-public
30th September 2016
New Shared Practice paper
New Shared Practice paper on involving people online and by phone. Read paper
27th June 2016
Supporting involvement in pharma
Discussions about supporting involvement in pharma. View discussion
27th June 2016