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
A final draft of this paper on things to think about if you plan to capture involvement was approved. It’s available on this page.
We agreed to explore changing our name to Charities Research Involvement Group – we’ll be consulting stakeholders about their views on this.
We had a really useful discussion about the new standards for public involvement in research, and we heard about involvement in MS Society’s research.
We looked at possible topics for discussion for the coming year. Top choices were:
- Diversity and inclusion
- Sharing info about the spectrum of involvement opportunities we offer
- How to monitor and evaluate PPI in funded research
- Involvement in basic research
News & Featured Documents
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
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