Resource was added by: Annee Amjad
What is this resource?
This policy sets out what research Parkinson's UK support via community involvement and participation. The policy has been developed in partnership with people living with Parkinson’s.
Who was it developed by?
Parkinson's UK
When might it be useful?
Refer to this when deciding what kinds of projects you will/won't support and to develop your own policy documents.
Supporting pharma with PPI – Parkinson’s UK guidelines
Resource was added by: Annee Amjad
What is this resource?
These guidelines outline how Parkinson's UK will support industry with involvement. They will support projects where the primary purpose is to benefit the Parkinson’s community.
Who was it developed by?
Parkinson's UK
When might it be useful?
Refer to this document if you are thinking about how your organisation might work with industry and what you'd need to put in place.
WHO framework for meaningful engagement
Resource was added by: Bec Hanley
This WHO framework for meaningful engagement of people living with noncommunicable diseases,
and mental health and neurological conditions might be useful if you need to reference influential bodies when you're trying to push for meaningful involvement, especially at an international level.
CRUK reward and recognition policy
Resource was added by: Bec Hanley
Gemma Altinger has shared this, but asks that THIS IS NOT SHARED. Please contact Gemma at CRUK if you want to share this policy. Gemma says that they will be doing more work around what CRUK's responsibilities will be with payments for people on benefits so the attached will be updated. She'll keep the SLG posted.
Autistica’s Involvement Promise
Resource was added by: Bec Hanley
Autistica's Involvement Promise (strategy) January 2018.
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.
Revolving Doors – user involvement guide
Resource was added by: Bec Hanley
A guide for organisations working with offenders, ex-offenders and their families, but very transferable to involvement with other groups of people.
Policies to support service user involvement
Resource was added by: Bec Hanley
Updated shared practice paper on the policies member organisations feel it is helpful to have in place to support service user and carer involvement. This was written in 2013 so is quite old, but is still felt to be useful.