4. Useful Links and resources

As a researcher:     

Going the extra mile: Improving the nation’s health and wellbeing through public involvement in research

The final report and recommendations to the Director General Research and Development / Chief Medical Officer (CMO) Department of Health of the ‘Breaking Boundaries’ strategic review of public involvement in the National Institute for Health Research (NIHR) 

‘ Public involvement [should] be so embedded in the culture of NIHR that new staff or new researchers coming into the field would naturally take on the values and practices of effective public involvement. Researcher

‘ Our vision for patient and public involvement in research in ten years’ time is that of ... a vast increase in the number of people who know about PPI and have taken part in some way in local research. Researchers and clinicians will automatically include public groups when they start developing their research protocol and they will have easy access to people who want to be involved by some form of volunteers register. Public contributor 

The ‘Breaking Boundaries’ Strategic Review of Public Involvement in the National Institute for Health Research (NIHR) was commissioned by the Director General Research and Development / Chief Medical Officer (CMO) Department of Health. It is presented for their consideration by the Review Team. Throughout the report ‘we’ refers to ‘the Review Team’. 

Promoting Patient and Public Involvement in Research

What is it?

A short video made with two members of the public talking about what patient and public involvement in research means to them.  

What is the purpose of the video?

·   To raise staff awareness about patient and public involvement in research and why it is important

·    To encourage staff to talk to patients about research and patient involvement

Where can I find it? It’s available to view on You Tube at http://youtu.be/IVUbygMNLrg


INVOLVE was established in 1996 and is part of, and funded by, the National Institute for Health Research, to support active public involvement in NHS, public health and social care research. It is one of the few government funded programmes of its kind in the world. As a national advisory group our role is to bring together expertise, insight and experience in the field of public involvement in research, with the aim of advancing it as an essential part of the process by which research is identified, prioritised, designed, conducted and disseminated.

Research Design Service Yorkshire and the Humber (RDSYH) 

The NIHR Research Design Service Yorkshire and the Humber (RDSYH) is committed to encourage active and meaningful patient and public involvement at all stages of the research process. The RDSYH has two main aspirations with regards to patients and public involvement.
  • To ensure that there is opportunity for all interested patients, service users and carers in the Yorkshire and Humber region to be involved meaningfully in research design activities alongside university researchers and NHS professionals
  • To ensure that patients, service users and carers are integral to the delivery of the RDS’s core involvement activities

Further information can be found at http://www.rds-yh.nihr.ac.uk/ppi/

As a patient, public group: Patient and Public Involvement (PPI) 

Patient and Public Involvement (PPI) in research means research which is done with and by patients and/or the public, rather than to, for or about them (Buckland et al, 2007). Involvement in research refers to an active partnership between researchers and patients and/or the public in the research process.

PPI is important as it enables researchers to design, manage and undertake research projects in collaboration with patients and/or the public, which leads to research that is relevant to the patient groups.

Many health research funding streams now require patients and the public to be involved in research design and the development of grant applications. The easiest way to do this is to contact one of our current lay advisory patient panels in an area that matches your research. Or you can set up your own one-off group or permanent project panel yourself. The Clinical Research Office has a PPI team that will help you set up patient panels and design public involvement within your grant applications.

Please contact Dan Lawrence for further information (daniel.lawrence2@sth.nhs.uk or 0114 2268475).

Further information can be found at http://www.sheffieldclinicalresearch.org/for-researchers/ppi-for-researchers/

People in research

Public involvement in research is when the research is carried out with or by members of the public rather than ‘to’, ‘about’, or ‘for’ them. This includes, for example, working with research funders to priorities research, offering advice as members of a project steering group, commenting on and developing research materials and undertaking research with research participants.

Further information can be found at http://www.peopleinresearch.org/

Enabling people with aphasia to participate in research: resources for stroke researchers

One third of patients have communication problems after a stroke, this is known as aphasia. People who have aphasia are often excluded from participating in research studies due to the difficulties of recruiting patients into studies with this condition. Patients, carers and researchers have expressed a wish for studies to try to include more people with communication difficulties.

The Clinical Research Network: Stroke has worked with people with aphasia and researchers to collate existing resources and develop new materials to help researchers to enable people with aphasia to participate. These resources are freely available.

The full resource pack is available hereand the tabs below link to the  individual sections of the pack, as well other useful resources.

We hope that researchers find the resources useful.

For further information please contact: Zena Jones. Senior Manager, NIHR Clinical Research Network Coordinating Centre, zena.jones@nihr.ac.uk

Helen Rodgers, Professor of Stroke Care, Newcastle University helen.rodgers@ncl.ac.uk

Further information can be found at http://www.crn.nihr.ac.uk/stroke/pcpie/enabling-people-with-aphasia-to-participate-in-research-resources-for-stroke-researchers/