Resource was added by: Bec Hanley
What is this resource?
Alzheimer’s Society conducted an online survey and interviews with their Research Network volunteers and researchers they had collaborated with.This report details the output of the surveys and interviews, shares case studies and demonstrates the range of ways involvement can have an impact in research.
Who was it developed by?
Alzheimer’s Society.
When might it be useful?
Read this report to plan or improve the way you capture and share the impact of involvement.
Involving people remotely
Resource was added by: Bec Hanley
This paper focuses on the experience of Cystic Fibrosis Trust, RNIB and National Deaf Children’s Society.
Positive risk-taking: from rhetoric to reality
Resource was added by: Bec Hanley
A discussion paper from Steve Morgan and Nick Andrews for the The Journal of Mental Health Training, Education and Practice.
Purpose – For health and social care services to become truly person-centred requires a fundamentally positive mindset from professionals and care workers, and a willingness to take some risks. The purpose of this paper is to explore how this will apply to delivering dementia services, where almost all of the initial impressions are of deficits, disability and disadvantage.
Arthritis Research UK involvement scoring system
Resource was added by: Bec Hanley
This slide deck explains a system that Chris Macdonald and his colleagues at Arthritis Research UK have developed to enable them to attribute scores to every funded research application to reflect the nature of interaction with patients and the quality of that interaction.
Chris says that although it's not perfect, it means that when you combine the score with other searchable and filter-able criteria, you can correlate scores with institution, individuals, type of grant, research call it was awarded in etc. ARUK can then analyse, assess and identify who needs support, who they can use for case studies or speakers at training sessions, or if a centre needs a slap on the wrist and an offer of training. They can also look at what are the most common types of involvement in certain types research or look across the whole portfolio over time to see how KPI’s (such as a simple ‘have they involved’) change as the community is better resourced and informed.
Positive risk taking – Steve Morgan and Nick Andrews
Resource was added by: Bec Hanley
Purpose – For health and social care services to become truly person-centred requires a fundamentally positive mindset from professionals and care workers, and a willingness to take some risks. The purpose of this paper is to explore how this will apply to delivering dementia services, where almost all of the initial impressions are of deficits, disability and disadvantage.
Design/methodology/approach – The co-authors combine their knowledge and experience of supporting and developing staff working in dementia services. The concept of positive risk-taking is explored within the legislative framework of the Mental Capacity Act 2005, Safeguarding and the Care Act 2014.
Autistica’s Involvement Promise
Resource was added by: Bec Hanley
Autistica's Involvement Promise (strategy) January 2018.
Groups, networks, panels – what are the key ingredients for success?
Resource was added by: Bec Hanley
This paper looks at groups, networks and panels, and what helps people to stay involved in a group (of any size) that exists over a period of time. It summarises discussion and presentations at a Shared Learning Group on Involvement meeting in October 2017.
Guidelines for involving people affected by asthma in research opportunities
Resource was added by: Bec Hanley
What is this resource?
Researchers wanting to involve Asthma UK's Research and Policy volunteers in their studies must read this guidance and complete a form. Approved studies will generally then be posted on the Research and Policy monthly Bulletin and social media, or in some cases on the website.
Who was it developed by?
Asthma UK (which is now Asthma and Lung UK)
When might it be useful?
Refer to these guidelines if you are looking to promote your service to researchers, outline the conditions of your support or establish 'rules' about your PPI programme.
Guidance for autism friendly meetings
Resource was added by: Bec Hanley
Role description for involvement reps
Resource was added by: Bec Hanley
Action on Hearing Loss has recruited Area Involvement Representatives, who support service users and staff to understand involvement. This is their role description. (updated in 2017)