2016 PPI Consultation

An online survey was sent to 60 researchers in April 2016, there were 28 completed surveys. We have collated the following information:

  • 27 researchers said that consultation was helpful (19 said ‘very helpful’)
  • 28 would use the service again
  • 25 researchers made changes to their study after receiving input
  • Ten made funding applications after consulting - Six of these applications were successful (resulting in a known £4.5 million income from major research funders, e.g., MRC, NIHR)

Impact of involvement on researchers

“I received really astute, thoughtful feedback from the group. Their perspectives on the research was really invaluable” (YP group)

“I was successful in receiving funding for my PhD fellowship through NIHR. The BRC Service User Group, and my consultation with it, formed a substantial part of my application and justification for the study.  I am certain that this materially led to a stronger application and contributed to my award being granted.” (SUAG)

“We changed the structure of the Participant Information Sheet, included information on data storage, changed some wording throughout the documents, and described how we will include carers in the study.” (FAST-R) 

"I used the BRC SUAG to present a qualitative study proposal to gain service users perspectives on the use of anonymised mental health patient records linked to other non NHS government held databases (e.g school data, employment records) for research. The SUAG  gave some very well considered ideas on what questions may be important to ask when canvassing service user perspectives on use of their mental health records, and how these questions could be framed. They also gave me important pointers on how to better engage service users and improve the terminology within the information material I provide on research programmes using mental health patient records. The SUAG has helped me refine the key aims of my proposal for applications to charitable funders. It has also helped me establish links with research active service users, who are providing further advice over the project design." (SUAG)

Impact of involvement on service users/carers

“Involvement in research has given me the confidence to feel and believe that I and my experiences have value and can make a positive contribution to mental health research. I cannot over-emphasize how positive my experience of involvement in research has been. Not only is it a very exciting and interesting area, but the people I have met through this; academics, clinicians and fellow service users, have all been so open and friendly and eager to exchange ideas and experiences.” (SUAG member)

“Involvement in research has given me a strong sense of purpose and opened up many opportunities for me. I can honestly say it has made the most significant and sustained contribution to my recovery. I would recommend it to everyone. Don't under-estimate the sense of meaning and motivation it can give you.” (SUAG member)