Salford Citizen Scientist Project - View Profile

The Citizen Scientist project was launched in September 2012 and is an innovative public engagement in research initiative. The web based system allows people to find out about health research in their local area and to seek opportunities to take part in research studies. This unique approach allows people to find out about studies that might suit them and to self refer into the studies by approaching their clinician or the researchers directly. It puts the choice with the patient. By making research more accessible in this way, the project aims to increase awareness, understanding and acceptance of  research. Our aim is to build a community that is fully engaged with health research and improve on the way volunteers are recruited into studies.

A broad range of studies are included on the site, and include those from NHS, local Academic institutions and Public Health bodies. The design of the project was determined after public consultation to assess public understanding of health research and preferred ways for accessing research opportunities. The project team works closely with a project group,  which includes members of the public; who as well as commenting on the structure of the project, contribute  with dissemination of information,  presentations and attendance at community events.

Members of the public  are asked to feedback on their experiences of being involved in research so that we can make improvements to the way research is communicated and delivered locally.

Scar Free Foundation Centre for Conflict Wound Research - View Profile

The Scar Free Foundation Centre for Conflict Wound Research at Queen Elizabeth Hospital Birmingham (QEHB), is a partnership with the University of Birmingham (UoB), the Centre for Appearance Research (CAR, University of the West of England), and the CASEVAC injured veterans club.

It is our aspiration to generate a national and international network of clinical and academic research with the common goal of improving the lives of patients living with scarring and developing approaches to prevent scarring.

The principal aim of the Centre is to reduce and eventually eradicate the impact of scarring and related loss of function amongst Armed Forces personnel who sustain critical injuries during their deployment, as well as civilians injured in conflict or terrorism incidents. It will achieve this by supporting a nationally relevant programme of biological and clinical research under three strategic themes:

School of Clinical Sciences, University of Bristol - View Profile

The Musculoskeletal Research Unit within the School of Clinical Sciences at the University of Bristol conducts health services research and clinical research.

Scottish Dementia Clinical Research Network - View Profile

The Scottish Dementia Clinical Research Network (SDCRN) was set up in 2008 to spread a culture of clinical research in dementia across Scotland and to improve recruitment of volunteers from both urban and rural areas.

We seek to increase the number of people who volunteer for clinical studies and increase research in the NHS in dementia.

We have set up a register of patients with dementia and their carers. It provides a central database of people who are happy to be contacted about research into the causes and consequences of dementia.

The register holds the names and medical information of willing participants who are interested in taking part in future research.

Service User Experience and Engagement in Research Group, London South Bank University - View Profile

The Service User Experience and Engagement (SUEE) in Research Group  was established in March 2009 at the Faculty of Health and Social Care (FHSC),  London South Bank University.  It has a membership of researchers, service users and academics.

The group has a dual aim:

1. To promote and facilitate research with service users, patient and public within the FHSC and with internal and external partners.   
2. To promote and facilitate research about service user, patient and public engagement and experience within the FHSC and with internal and external partners.  

These are achieved within the context of the wider terms of reference of the FHSC Research and Enterprise Strategy (2010-13 & 2013-16).

The terms ‘service user, patient and public engagement and experience’ are intended to encapsulate the engagement and experience of people who use health and social care services and their carers; and public who are engaged in information and consultation on NHS and social care services.  

Service Users Research Endeavour Group at Liverpool Heart and Chest Hospital - View Profile

The Service Users Research Endeavour (SURE) group was formed in 2001 to ensure patient engagement in research. SURE are a pivotal part of the research infrastructure at the Trust. SURE’s main role is to ensure the value of our own sposnsored research trials, and the high quality of research documentation given to patients.

SURE members are patients, carers or members of the public with a big interest in research and on making clinical trials at the Trust patient friendly.

The Chairman and Deputy Chairman are also members of the Trust Operational Research Committee and are active researchers in their own right. They are involved in research studies and have already had their work published in scientific journals. A letter from the group on the low quality of patient information from multicentre commercial trials has been published by The Lancet in 2010.

Shaping Our Lives - View Profile

Shaping Our Lives National User Network is an independent user-controlled organisation, think tank and network. We started as a research and development project but became an independent organisation in 2002. We work with a wide and diverse range of service users. We do not discriminate on the basis of race and ethnicity, sexual orientation, gender, age or religious belief. Here are some of the people we work with:

• people with physical and/or sensory impairments
• people with learning difficulties
• users and survivors of mental health services
• young people with experience of being ‘looked after’
• people living with HIV/AIDS
• people with life limiting illnesses
• older people
• people with experience of alcohol and drug services
• homeless people

Our postal address is: BM BOX 4845, LONDON, WCIN 3XX

Sheffield Emergency Care Forum - View Profile

Sheffield Emergency Care Forum

Sheffield Emergency Care Forum (SECF) is now over three years old as a formal group. The forum is independent and is dedicated to public and patient involvement (PPI) in clinical research. Its particular interest is centred on the emergency care services provided by the NHS in Sheffield and the surrounding area.

Three years ago one of the founding members was invited to join the Strategic Local Priority Group for PPI in South Yorkshire and the PPI forum of the local Research Design Service. After attending the Northern Action Learning Sets for PPI in Leeds it was decided to set up a formal PPI group for research into emergency care services in Sheffield.  Colleagues who were leading research projects were enthusiastic and supportive as were the local Research Design Service (RDS) and Comprehensive Local Research Network (CLRN) colleagues.

The founding members of SECF had previously been members of Community Health Council, the Patient Forum for Sheffield Children’s Hospital and Sheffield LINk. They are now members of Healthwatch.

Our group is made up of a mix of ages and interests. Two members represent the ambulance service  and we also have enlisted medical students who are interested in research into emergency care services. The SECF meets formally quarterly but at other times when necessary. The group has good connections to other groups across the city and is able to gather focus groups for researchers when asked.

As a group, as individuals or as pairs, our members have given ad hoc advice to researchers, have convened focus groups, have reviewed proposals and have served/or are serving on steering groups for many research projects relating to emergency and pre-hospital care. SECF is often approached by researchers or research students to comment or advise on new ideas for proposals. If proposals are funded the SECF members are usually invited to serve on the steering group and will then maintain involvement  throughout the length of the study, assisting in dissemination to the wider public audience towards the end of the project.

Website: www.secf.org.uk

Sheffield Motor Neurone Disorders Research Advisory Group - View Profile

Sheffield Motor Neurone Disorders Research Advisory Group was set up in September 2009 to enhance patient and public involvement in motor neurone disorders research.

Our Aims

• Enable patient and carer perspectives to be included in research proposals
• Identify and prioritise research topics important to patients and their families
• Improve recruitment to research studies
• Aid researchers to write clear lay summaries and study information sheets
• Help share research findings with a wider audience
• Raise awareness of MND research

For further information please view our Terms of Reference

Solent NHS Trust - View Profile

We specialise in providing high quality, best value community and mental health services. We are the main provider of community services to people living in Portsmouth, Southampton and to parts of Hampshire.  We are the main provider of mental health services to people living in Portsmouth.

South Coast Informal PPI Network - View Profile

Informal network of professionals with a remit for public and patient involvement in applied health and social care research, and public/patient representatives who work with them in organisations within the local NHS research community.

South London Diabetes Patient Involvement Group - View Profile

Our patient involvement group allows people with diabetes and their relatives to get involved in diabetes research in South London. We set up the group with a small grant from the Research Design Service and our now are supported by the South London Comprehensive Local Research Network and Diabetes Research Network for NE London.

Southern Health NHS Foundation Trust - View Profile

Southern Health provides community health, specialist mental health and learning disability services across the South. We aim to provide high quality, safe services which improve the health, wellbeing and independence of the people we serve. The Research and Development Department’s vision is to embed a culture within the Trust that enables every patient the opportunity to participate in research.

Stroke Association - View Profile

Stroke Association is the leading charity in the UK changing the world for people affected by stroke.

In the last 20 years the numbers of people dying of stroke has halved while the number of major strokes has decreased by 40 per cent. More people than ever are benefiting from cutting-edge treatments and making full recoveries. And more people now understand the need to seek emergency treatment for stroke.

We have been at the heart of every one of these developments, championing the cause of stroke and stroke survivors.

Our research has helped to improve treatments and care which has saved tens of thousands of lives.

Our support services have helped hundreds of thousands of people get through one of the most frightening experiences of their lives and build a life after stroke.

And our campaigning has touched the lives of even more people through initiatives like the FAST campaign which we developed to help people recognise the signs of a stroke and take emergency action. The Department of Health in England was so impressed with this campaign that they took it up in 2009 and promoted it to millions of people.

But there’s still more to do. 150,000 people have a stroke every year in the UK

• 50,000 will make a full recovery
• 50,000 will be left with a severe disability
• 50,000 will die.

These figures remain shocking.

Stroke is one of the greatest health challenges of our time but doesn’t get the attention or funding it deserves – especially compared to cancer and heart disease.

As the leading stroke charity in the UK we know we need to change how people think about this devastating disease. But we can’t do it on our own. We need to work with people who share our commitment to changing the world for people affected by stroke – with stroke survivors and their families; with decision makers; with researchers and medics; as well as with our supporters – so that we can ensure stroke gets the attention it deserves.

At the Stroke Association we believe that strokes can and should be prevented.

We believe that everyone has the right to make the best recovery they can from stroke.

We believe in the power of research to save lives and ensure people make the best recovery they can.

And ultimately, we believe that together we can change the world for people affected by stroke.

We are for life after stroke.

Stroke Research Network – NIHR - View Profile

The National Institute for Health Research Stroke Research Network provides support for clinical stroke research to take place n the NHS, so that patients benefit from new and better treatments and we learn how to improve future NHS healthcare.

Our purpose is to provide the health service infrastructure to facilitate the conduct of clinical trials and other well designed studies in stroke across the full spectrum of disease treatment and secondary prevention through our local networks and national coordinating centre.

Surrey and Sussex Comprehensive Local Research Network - View Profile

Part of the National Institute for Health Research, the research arm of the NHS. One of the 25 Comprehensive Research networks supporting research in the NHS. For information see http://www.crncc.nihr.ac.uk/about_us/ccrn/surrey_sussex