The CCF is committed to active public involvement in all stages of research.
CCF is developing a patient and public involvement plan for 2013-2015. The plan will provide a framework for all of CCF’s patient and public involvement activities during that time.
A recent webinar hosted by NIHR on Patient and Public Involvement – the opportunities and challenges is now available to watch here.
A National advisory group which supports greater public involvement in the NHS; funded by the NIHR. For further information please see INVOLVE. For information on plain English summaries please click here.
invoDIRECT is a new online resource, a directory of networks, groups and organisations that support active public involvement in NHS, public health and social care research.
Download a comprehensive and practical guide about involving people in research with examples, Source INVOLVE (2012).
For information regarding the inclusion of children and young people in research we recommend reading P, Kirby (2004) A guide to actively involving young people in research, an INVOLVE publication.
Also recommended is Payment for Involvement a guide by Roger Steel and Lucy Simons (Revised August 2012).
For ideas about training and support you can also refer to INVOLVE online resources on training and development as well as their May (2010) report from the Sharing Innovative Practice workshop which contains examples of training and support for PPI.
In 2014 an independent panel conducted a review of public involvement in the National Institute for Health Research (NIHR). This review was called Breaking Boundaries. Hundreds of public contributors, researchers and health professionals took part. Approximately 80 UK and international organisations gave evidence. Following its inquiry, the review panel submitted a report to the Director General Research and Development / Chief Medical Officer (CMO), Professor Dame Sally Davies. This was published as Going the Extra Mile on 27 March 2015. The report praises NIHR for the way it has supported the public, researchers and health professionals to work together and make a difference to health research over the last decade. A new ten-year vision and strategic plan is needed to build on this success, it says. The aim must now be to make public involvement “as important to research as accurate measurement.”
The report calls for a new vision, mission and set of principles to underpin public involvement and in future the NIHR should measure success in three main areas:
Reach: the extent to which people and communities are engaged, participating and involved in research including the diversity of this population.
Relevance: the extent to which public priorities for research are reflected in NIHR funding and activities.
Refinement and improvement: Models and methods for ensuring public involvement is adding value to research excellence in the NIHR.
A full copy of the report can be found at: http://bit.ly/1GBotl2
For further information contact: Simon Denegri NIHR National Director for Patients and the Public in Research Simon.Denegri@nihr.ac.uk
Supporting research studies carried out in England with the help of people who use the NHS services and people who work in them.
The MHRN has a comprehensive Service User Research Group/Mental Health Research Network guide (2006) about involving members of the public with mental health issues in research available.
Supporting both researchers and patients and the public in research. Click here to access the PPIRes website.
A UK Clinical Research Collaboration project led by one of its Partner organisations INVOLVE, the national advisory group as mentioned above. This is a great place for researchers to advertise involvement opportunities. For further information please click here.
A national network of service users and disabled people. For information about good practices for meetings we recommend the Shaping Our Lives page.
Promoting partnerships for better research and development. For guidance on chairing meetings we suggest the 2010 document by TwoCan Associates for the UKCRC and NCRI.