Patient and Public Involvement in Research
Information for Patients and the Public
Click here for information for Researchers.
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.
Your health data and research
There has been an important debate in recent months about the use of patient's health data in clinical research. For a guidance leaflet on this from the National Institute for Health Research (NIHR), please click here.
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
Obstetrics, Gynaecology and Neonatology
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 Lema Vernon, Research Administrator on 0114 226 8515 or Lema.Vernon@sth.nhs.uk
Patient and Public Awareness
Involving patients and members of the public in research can lead to better research, clearer outcomes, and a faster uptake of new evidence. The National Institute for Health Research (NIHR) encourages patients and the public to be actively involved in all NIHR-funded health and social care research to:
- set research priorities
- identify the important questions that health and social care research needs to answer
- give their views on research proposals alongside clinicians, methodologists, scientists, and public health and other professionals
- help assess proposals for funding
- take part in clinical trials and other health and social care research studies, not just as subjects but as active partners in the research process
- publicise the results.
The NIHR website has information about the different ways patients and the public can get involved in NHS research. For further details please see here.
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
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