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. The below information lays out the ways in which you can become involved.
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 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 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
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
