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Patient and Public Involvement in Research 

Information for Patients and the Public

There are two ways you can become involved in research - either by taking part in a trial or by becoming a member of a Patient & Public Involvement (PPI) panel.

If you are interested in participating in a research trial please visit our Get Involved page

The below information lays out the ways in which you can become involved as a member of a Patient & Public Involvement (PPI) panel.

Getting Involved in Local Research

NIHR Research Design Service for Yorkshire and the Humber

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. This leads to research that is also relevant to the patient groups and is not based on purely scientific theory and method.

The NIHR Research Design Service for Yorkshire and the Humber works to support health research in the Yorkshire and Humber region. They are always interested in hearing from patients, carers, service users, voluntary groups and third sector organisations who would like to work with researchers. For further information and contact details, please visit here.

Buckland, S. et al (2007) Public Information Pack. How to get actively involved in NHS, public health and social care research. INVOLVE

Patient and Public Involvement in Cancer research

The North Trent Cancer Research Network has a Consumer Research Panel (CRP) that aims to engage both cancer patients and carers in the process of research into the causes, treatment and palliation of cancer illnesses. Members of the CRP sit on local and national committees which oversee the work of cancer researchers, others are members of the steering groups for research protocols and clinical trials, offer advice on the day-to-day running of cancer units and the work of the professionals involved, and help produce better information and care for patients based on their own experiences. Some members are also actively involved in planning of research including the application for ethical approval; data gathering and data analysis; authorship of articles in the research literature; and the translation of the research into clinical practice.

http://www.ntcrp.org.uk/index.html

 

Patient and Public Involvement in Cardiology and Cardiothoracic Surgery Research


The Cardiovascular Research Patient Panel is based within the Academic Directorate of Cardiology and Cardiothoracic Surgery and is made up of patients, relatives, carers and members of the public. The Panel meets regularly to review research proposals from STH and the University of Sheffield, with the aim of ensuring that studies are feasible and the protocols are suitable and manageable for patients.
More information can be requested from the Rachel Dwyer (Panel Coordinator) at rachel.dwyer@sth.nhs.uk or view the web page here
 

Patient and Public Involvement in Community Infections

The patient and public involvement panel for Community infections (which includes Hepatitis B and C; Tuberculosis; C-difficile; Influenza and Meningitis) was set up in October 2013 as part of the wider Communicable Diseases directorate. The purpose of the group is to ensure that the research and the services provided within the directorate are patient/carer focused and that patients/carers have the opportunity to influence the directorate’s strategy. The group meets quarterly at the Royal Hallamshire Hospital site during lunchtimes. If you are interested in becoming involved in this panel please contact Tracey Sutton, Research Administrator on 0114 2711889 or tracey.sutton@sth.nhs.uk 
 

 

Patient and Public Involvement in Dementia Research


The South Yorkshire Dementia Research Advisory Group (SDEM RAG) brings together those affected by Dementia to inform research. We are a committee of individuals that use our unique knowledge of living with the disease to join in the fight against it by helping researchers. This group aims to engage patients, carers and health care professionals in the process of research into the causes, treatment and palliation of Dementia. Members of the SDEM RAG are actively involved in the planning of research including the application for ethical approval; offering feedback on research proposals; providing ideas to improve patient involvement; and the translation of the research into clinical practice. We welcome new members to the group and for more information about how to access the group or to enquire about membership please contact h.hollinger@sheffield.ac.uk

 

Diabetes & Endocrinology Patient Panel

The Diabetes & Endocrinology Directorate was formed in 2009 and the focus of our research is on patients with diabetes (Type I and Type II) or patients who have an endocrine disorder, for example a neuroendocrine tumour, adrenal or a pituitary disease. The Diabetes & Endocrinology patient panel meet regularly to ensure that research carried out within the Directorate is patient focused. The panel review research proposals from STH and the University of Sheffield, help to develop patient information literature, advise on the recruitment of research participants into clinical trials and on the best ways of sharing our results. For more information please contact Sharon Caunt on 0114 2265976 or email Sharon.caunt@sth.nhs.uk 
 

Patient and Public Involvement in Obstetrics, Gynaecology and Neonatology Research

The Jessop Wing has a number of active Public and Patient Involvement groups covering themes in Obstetrics and Gynaecolcogy. In the Jessop Wing we value Public and Patient Involvement. If you are interested in contributing to the research which takes place in Jessop Wing please contact Clare Pye on 0114 226 8333 or Clare.Pye@sth.nhs.uk

 

Patient and Public Involvement in Bone Research

The Lay Advisory Panel for Bone Research meets monthly to provide a lay perspective and to influence research conducted in bone disorders. For more information contact Selina Simpson on 0114 30 52005, s.j.simpson@sheffield.ac.uk  or click here to view a poster summarising the group's work.

 

Sheffield Emergency Care Forum (SECF)

With the Sheffield University School of Health and Related Research (ScHARR) acting as a catalyst, the Sheffield Emergency Care Forum (SECF) was set up as a formal, independent PPI (Patient and Public Involvement) group in 2010. SECF is a group of people who became interested in clinical research into emergency care provided by the NHS. The main purpose of the group is to assist in research which would help to improve the quality of care given to patients who need to access urgent and emergency care. As lay members of steering groups SECF has taken part in many research studies, being involved from the design stage and throughout the length of the project. Members have also helped to disseminate findings to the wider public. When asked by researchers SECF have been able to bring together service users for focus groups. The group would be happy to advise any researcher who is hoping to carry out research into NHS emergency care services.
For more information please contact: Enid Hirst (SECF co-ordinator) stanenidhirst@hotmail.co.uk
 

 

Patient and Public Involvement in Motor Neurone Disorders Research

The Sheffield Motor Neurone Disorders Research Advisory Group (SMND RAG) brings together those affected by MND to inform research. We are a committee of individuals that use our unique knowledge of living with the disease to join in the fight against it by helping researchers. This group aims to engage patients, carers and health care professionals in the process of research into the causes, treatment and palliation of Motor Neurone Disorders. Members of the SMND RAG are actively involved in the planning of research including the application for ethical approval; offering feedback on research proposals; providing ideas to improve patient involvement; and the translation of the research into clinical practice. We welcome new members to the group and for more information about how to access the group or to enquire about membership please visit the website www.smndrag.group.shef.ac.uk

 

Patient and Public Involvement in Professional Services

The Professional Services Directorate Patient Panel is a new research panel for patients and the public. The Directorate provides a range of services that aims to meet the physical, social, psychological and spiritual needs of patients. Our services include physiotherapy, occupational therapy, speech and language therapy, dietetics, chaplaincy and psychology. Our panel is made up of individuals and carers of individuals with a wide variety of diseases and health conditions who have experiential knowledge of our services. The purpose of the panel is to provide a patient and public point of view to our research to ensure that it is of high quality and patient focused. We are actively recruiting to our panel. If you would like more information about becoming a member please contact Sabrina Eltringham on 0114 271 2676 or email sabrina.eltringham@sth.nhs.uk.

Please take a look at our video, which we developed with members of the public to raise awareness amongst our staff about the importance of involving patients and the public in our research.
 

External Resources

NHS Choices

NHS Choices contains excellent information for people interested in taking part in clinical trials. Click here to read about why clinical trials are important, what they involve, who can take part in them, and to find out which trials are taking place in Sheffield.

INVOLVE

INVOLVE is a national advisory group which supports greater public involvement in NHS, public health and social care research. INVOLVE is funded by the National Institute for Health Research (NIHR). and works with others to create the research community of the future which will be broader, more inclusive and more representative of the population as a whole. To find out more about INVOLVE, it's work and how you can take part please see here.

The NHS Constitution

The handbook to the NHS Constitution published in January 2009 pledges to do everything possible to ensure that patients from every part of England are aware of research that is of particular relevance to them. For more information about the pledge and how it will be achieved, please visit the NIHR website here.

Information for Researchers

The Guardian hosts an informative online resource focusing on engaging patients and the public in research. Please click here to read this.

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. This leads to research that is also relevant to the patient groups and is not based on purely scientific theory and method. Many health research funding streams now require patients and the public to be involved in research design and the development of grant applications.

The NIHR Research Design Service for Yorkshire and the Humber is available to provide researchers with guidance on PPI for grant applications and can provide links to current patient groups. It also provides funding awards that researchers can apply for to use towards PPI in their own research.

For further information, guidance and support, please visit here.

Buckland, S. et al (2007) Public Information Pack. How to get actively involved in NHS, public health and social care research. INVOLVE