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
A really interesting and useful meeting with a focus on diversity and inclusion. This included a fab talk about work at St Mungo’s followed by a useful discussion and everyone committing to an action.
We had an update about the draft framework to capture the impact of involvement.
We heard about the Three Nations Dementia Working Group’s code of conduct and how it was developed.
We’re going to do some thinking about how to get more senior level buy-in for involvement – more at our next meeting. There will also be a market place and a consultation wheel at our next meeting. Our training on dealing with difficult situations will take place in January.
Shared Learning Group on Involvement in Research
We talked about how to promote equality and diversity and we heard about NIHR’s work in this area.
We welcomed Gail Davies, a professor at Exeter University who is leading a Wellcome Trust funded project called the Animal Research Nexus. She talked about PPI in animal research.
News & Featured Documents
CRUK patient involvement toolkit for researchers
Great resource for researchers, now improved and updated. https://www.cancerresearchuk.org/funding-for-researchers/patient-involvement-toolkit-for-researchers
16th November 2018
Patients’ roles and rights in research
See here for a great editorial in the BMJ about the importance of PPI in research.
8th August 2018
Things to consider if you are capturing the impact of involvement in research
This guidance document has been developed by the Shared Learning Group on Involvement in Research, with input from patients, carers and researchers. Anyone is free to use it – pleas let us know what you think! Things to consider if you are capturing impact FINAL-public
5th July 2018
Alzheimer’s Society impact report
Report on how the Alzheimer’s Society’s Research Network has had an impact on different types of research and different stakeholders: Research Network Report low-res-public
15th May 2018
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
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
Supporting involvement in pharma
Discussions about supporting involvement in pharma. View discussion
27th June 2016