Alcohol Research UK is an independent charity that tackles alcohol-related harm by funding high quality, impartial research. We provide grants to people working at the cutting-edge of alcohol-harm prevention, whether undertaking research, testing out new ideas or running projects that help to disseminate high quality evidence. We also have a studentship scheme which invests in promising researchers embarking on a career in the field.
Alzheimer’s Society is the leading support and research charity for people with dementia, their families and carers. Alzheimer’s Society provides information, education, support and care to help people live their lives to the full. Researchers are making great progress in the fight against dementia. Alzheimer’s Society funds research to improve the lives of people today and to find a cure for tomorrow. Our research portfolio covers laboratory studies into the causes of dementia, developing treatments and strategies to prevent dementia and improving support for people with dementia and their carers. Alzheimer’s Society works with people affected by dementia to ensure that our research informs practice and transforms lives. In 2012/2013 Alzheimer’s Society invested more then £5 million in new dementia research.
Supporting the Sikh & Punjabi Community with Alcohol Misuse and Others Affected by it.
Arthritis Action’s vision is for people to live active lives, free from arthritis pain.
Our aim is to empower people with arthritis to take control of their lives, manage their condition and reduce the need for medical intervention.
We are a registered charity who works in partnership with members, health professionals, other charities, researchers, arthritis experts and corporates is very important to us.
Arthritis Research UK is the charity dedicated to stopping the devastating impact that arthritis has on people’s lives.
Our long-term commitment is prevention, developing a cure, and transforming the lives of those with arthritis.
We fund research into new treatments to end the pain of arthritis, and provide information on living well with arthritis.
The Arthritis Research UK Centre for Sport, Exercise and Osteoarthritis was awarded to Nottingham University Hospitals NHS Trust, under the directorship of Professor Mark Batt.
First established in 2013, the Arthritis Research UK Centre for Sport, Exercise and Osteoarthritis is led by Nottingham University Hospitals NHS Trust and is a consortium of six universities: Nottingham, Oxford, Southampton, Bath, Loughborough and Leeds. The Centre is strengthened by several international collaborators, with expertise from around the world.
The Centre consists of an established group of world-leading researchers in sport and exercise medicine, orthopaedics, rheumatology, skeletal muscle biology, physiotherapy, podiatry, occupational therapy, epidemiology and physiology.
The first five years of Centre funding (2013-17) focused primarily on research with elite sports including Olympic athletes, professional footballers, cricketers and rugby players. The next five years’ research (2018-22) will build upon existing research findings, focusing specifically on recreational athletes and exercisers, to enhance our understanding of the effects of sport, exercise and injury on musculoskeletal health and osteoarthritis.
The Centre will work with sports representatives, patients, the public and carers, in order to improve the understanding of the effects of sport and exercise on joint injury and osteoarthritis. The Centre’s research will lead to plans for prevention, assessment and treatment of injury, aimed at reducing the risk of later osteoarthritis.
The Arthritis Research UK Pain Centre at the University of Nottingham investigates the mechanisms that lead to the chronic pain experienced by sufferers of arthritis, in order to improve the treatment of that pain. The Centre is funded by a substantial award from Arthritis Research UK.
The Director of the Centre is David Walsh, Professor in Rheumatology, and the Deputy Director is Professor Victoria Chapman.
Research is undertaken by a multidisciplinary team based in the Schools of Medicine and Life Sciences. The team, led by Professors Walsh, Chapman, Auer, Lincoln, Doherty, Scammell, Vedhara and Ferguson as well as Drs. Kelly and Zhang, bring together expertise in the investigation of pain mechanisms and the evaluation and development of existing and new analgesics.
Psychological aspects, including patients’ beliefs about their pain are being studied alongside magnetic resonance imaging of brain activity. Studies of the peripheral, spinal and brain mechanisms contributing to arthritis pain increasing our understanding and pointing the way to the potential of novel treatment targets.
Our mission is to pursue international excellence in multidisciplinary, translational research, thereby enhancing understanding of arthritis pain and improving its treatment.
Asthma UK is the only national charity dedicated to asthma in the UK and as such has a responsibility to tackle the issues affecting people with asthma today, and to conduct research that will lead to a better future for people affected by asthma tomorrow. Asthma kills three people each day and yet research into asthma is under-resourced and under-funded.
Asthma UK funds research into all aspects of asthma, from scientific studies into the biology of our lungs, through to the creation of new treatments and investigating its causes. To date, the charity has spent over £50 million on basic and clinical research, making us a significant contributor to the asthma research landscape in the UK.
The Centre was launched in May 2014. It is a ‘virtual’ Centre, in that there is no physical building – it is a collaboration between the leading asthma researchers from 13 universities across the UK, led by the University of Edinburgh and Queen Mary University of London, working with Asthma UK, people affected by asthma, NHS partners and other organisations.
Our focus is on improving the lives of people with asthma in the short-to-medium term, rather than on laboratory research.
The assumption of Athena’s research program is that in order to realize the development of ‘inclusive’ science and technology, the knowledge and expertise of a diverse group of non-scientific actors need to be integrated in decision making on innovation processes. The rationale for this is that these actors have relevant knowledge and different perspectives.
A further assumption is that this integration should take place early in the innovation trajectory through a well-designed interaction process. The interaction should lead to a gradual deepening of the understanding of different perceptions concerning the definition of the problem context and the desired outcomes. In addition it should lead to a joint vision on how to proceed. The key question then is: how to organize the interaction in such a way that meaningful exchange of knowledge and expertise between scientific and non-scientific groups can take place effectively. This requires:
To realize such a structured interaction process, we have developed a model for understanding and influencing interaction between actors in science and society, as well as a methodology to operationalize the model (the ILA approach). The model integrates available knowledge and perspectives on societal needs and on potential innovations from relevant actors in societal and scientific fields (e.g. scientists, policy makers, societal organisations, companies, citizens, and consumers) on three levels of analysis.
Neuropathy affects 50% of people who have had diabetes for 20 years. The clinical signs include loss of feeling in the feet, lower limb muscle weakness and joint stiffness. These changes can alter the way people walk and cause a loss of information passed from the feet to the brain. Problems associated with such changes include increased risk of foot ulceration, reduced balance and increased incidence of falls within those affected by diabetic neuropathy. The BEUP programme lead by Dr Paton involves researchers from the rehabilitation research group, diabetologists, podiatrists, physiotherapists and people with diabetes, with specialist knowledge of diabetic foot ulcer management, foot pressure analysis, orthotic design, balance problems and walking disorders, to focus on the problems faced by people with diabetes and neuropathy.
Barts Health is the largest NHS Trust in England and one of the leading health care providers in the UK. The Trust’s five hospitals deliver high quality safe and compassionate care to the 2.5 million people of east London and beyond.
Barts Health’s vision is to be a healthcare organisation that offers urgent specialist and community services specifically tailored to meet the needs of our diverse local communities.
Berkshire Healthcare NHS Foundation Trust (BHFT) is the provider of mental health and community based health services across Berkshire.
The Bristol Speech and Language Therapy Research Unit conducts research and development that aims to improve the care and management of people with speech, language and communication disorders by developing knowledge related to the prevention, management and social consequences of the disorders. The Unit is hosted by North Bristol NHS Trust and is situated in the grounds of Frenchay Hospital, Bristol. The team consists of speech & language therapy, psychology and information systems researchers with specialisms in primary language delays, speech impairments, aphasiology and stuttering as well as administrative and technical support. Our research is entirely funded by grants and charitable donations.
Located on the Cambridge Biomedical Campus, the Cambridge BRC receives funding from the National Institute for Health Research (NIHR) to translate fundamental biomedical research into clinical research that benefits patients.
Here at Cambridgeshire and Peterborough NHS Foundation Trust (CPFT) we are dedicated to providing high quality care with compassion. We deliver many of the NHS services that are provided outside of hospital and in the community such as physical, mental health and specialist services.
We are a health and social care organisation, providing:
We support around 100,000 people each year and employ more than 3,400 staff. Our largest bases are at the Cavell Centre, Peterborough, and Fulbourn Hospital, Cambridge, but our staff are based in over 90 locations.
We are a University of Cambridge Teaching Trust and member of Cambridge University Health Partners, working together with the University of Cambridge Clinical School.
The National Institute for Health Research (NIHR) Cancer Research Network provides support for cancer research to take place in the NHS, so that patients benefit from new and better treatments and we learn how to improve the delivery of future healthcare in the NHS.
We provide the health service infrastructure (people and resources) to enable the conduct of clinical trials and other well designed studies in cancer research to take place in the NHS. Further information at: http://www.ncrn.org.uk
The Central Commissioning Facility (CCF) manages a number of research programmes and other activities for the National Institute for Health Research (NIHR) and for the Department of Health Policy Research Programme.
CCF runs funding competitions, through a rigorous process of independent review to ensure that only the most outstanding applications are funded. Once successful proposals are identified and contracts entered into, CCF then monitors and manages the delivery of those contracts, on behalf of the funder.
In addition to managing research programmes for the NIHR (Invention for Innovation, Programme Grants for Applied Research, Research for Patient Benefit) and the Department of Health Policy Research Programme, CCF also manages competitions and contracts for other NIHR initiatives that are part of NIHR infrastructure and NIHR Faculty.
For more information on CCF: http://www.ccf.nihr.ac.uk/Pages/Home.aspx
The Centre for Healthy Ageing & Rehabilitation is based at the Bradford Institute for Health Research at Bradford Royal Infirmary. The Centre has strong focus in applied health research in elderly care and stroke, with aims to improve health care.
PRIMER stands for Primary Care Research in Manchester Engagement Resource. The group is part of the Centre for Primary Care, and works with researchers at the University of Manchester and beyond to ensure there is adequate patient and public involvement in research and to assist in the design and carrying out of research projects.
The Centre for Reviews and Dissemination (CRD) is a research department at the University of York that specialises in evidence synthesis, assembling and analysing data from multiple research studies to generate policy relevant research. We undertake high quality systematic reviews and associated economic evaluations, develop underpinning methods, and promote and facilitate the use of research evidence in decision-making.
Formed in 1980, Children’s Liver Disease Foundation is the only UK charity dedicated to fighting all childhood liver diseases.
The Cicely Saunders Institute is the first purpose-built institute for research into palliative care and rehabilitation. It opened in May 2010 as the result of a partnership between King’s College London and the charity Cicely Saunders International. The Institute brings together academics, healthcare professionals, community organisations, patients and families in one centre and acts as the hub for a network of international research. We aim to pioneer the very best in palliative care and rehabilitation by integrating cutting-edge research, skilled multi-professional care, and innovation in engagement and education.
The Clinical Research Office is a partnership between Sheffield Teaching Hospitals NHS Foundation Trust, one of the largest and most successful NHS Foundation Trusts in the UK, boasting a number of world-renowned services, and the University of Sheffield, a world-class university with a reputation for outstanding research.
As one of 21 teaching hospitals across the country, our researchers and academics have a strong track record of clinical and research excellence, pioneering new treatments and drugs that are now routinely used in clinical practice. Together with the University of Sheffield, we provide a number of cutting-edge research facilities to develop the talents, skills and specialisms of our researchers, which in turn improves patient care.
We aim to:
Our expertise is second to none:
Our world-class facilities include:
Cochrane is a global independent network of researchers, professionals, patients, carers and people interested in health. We are a not-for-profit organization working together to produce credible, accessible health information that is free from commercial sponsorship and other conflicts of interest. We do this by producing reviews that summarise the best available evidence generated through research to inform decisions about health. Cochrane Reviews are systematic reviews of primary research in human health care and health policy and are internationally recognised as the highest standard in evidence-based health care. Cochrane Systematic Reviews are published online, in full text, in the Cochrane Database of Systematic Reviews in the Cochrane Library – www.cochranelibrary.com.
Cochrane UK is one of 14 Cochrane Centres around the world supporting the global work of Cochrane and maximising the use and impact of Cochrane reviews for the UK and Ireland. Cochrane UK is funded by the National Institute for Health Research (NIHR) and hosted by the Oxford University Hospitals NHS Trust. The centre supports the production of Cochrane systematic reviews through a learning and development programme for Cochrane authors and other contributors. We aim to maximise the impact of Cochrane reviews by disseminating the findings widely to health professionals, researchers, commissioners, the public, charities and the media, through social media, events, presentations and partnerships.
Acute District General Hospital – Research Active Trust with around 500-800 patients in clinical trials every year.
The NIHR CCRN is a clinical research delivery organisation working with the local NHS enable studies to happen and complete to time.
The NIHR Clinical Research Network Eastern helps to increase the chances for patients to take part in clinical research and makes sure that studies are efficient. We make sure that clinical research has the place it deserves in the day-to-day work of the NHS. We have patient and public involvement managers who work to get patient feedback and ideas which can improve how we work.
The Cystic Fibrosis Trust is the only UK-wide charity dedicated to fighting for a life unlimited by cystic fibrosis for everyone affected by the condition. We are working towards a brighter future by funding cutting-edge research, driving up standards of care & supporting people with the condition & their loved ones every step of the way. This is facilitated through constant fundraising & campaigning, alongside the following:-
Registry – The Cystic Fibrosis Trust sponsors & manages the UK Cystic Fibrosis Registry, one of the world’s leading databases of patient information with over 99% of people with cystic fibrosis consenting to their data being submitted. It provides a secure centralised database, recording demographic, health & treatment data on people with cystic fibrosis in England, Wales, Scotland & Northern Ireland.
Research – Our wide range of research grants offers support to scientists at every stage of their careers, attracting the brightest & best into the fight against cystic fibrosis. We’re the largest charity funder of cystic fibrosis research in the UK investing more than £3m into ground-breaking research.
Clinical Trials Accelerator Platform – The Clinical Trials Accelerator Platform is a UK-wide initiative which aims to facilitate & speed up the set-up of cystic fibrosis clinical trials. It will establish a collaboration of Trials Accelerator Centres who collectively, will increase the number of clinical trial opportunities & lead in the delivery of clinical trials for the cystic fibrosis community. The Trials Accelerator will ensure Patient & Public Involvement is embedded within all stages of this programme of work to ensure there is increased participation in clinical trials for the UK cystic fibrosis community.
DECIPHer is a UKCRC Public Health Research Centre of Excellence.
DECIPHer brings together leading experts from a range of disciplines to tackle public health issues such as diet and nutrition; physical activity; and alcohol, tobacco and drugs, with a particular focus on developing and evaluating multi-level interventions that will have an impact on the health and wellbeing of children and young people. The Centre engages strongly with policy, practice and public user communities as our stakeholders, to translate the research results into practical outcomes.
DECIPHer is led by Professor Laurence Moore, Cardiff University, in a strategic partnership with colleagues at the University of Bristol, led by Professor Rona Campbell, and Swansea University, led by Professor Ronan Lyons.
Dementia NI was set up by five people living with a diagnosis of dementia.
The organisation was founded on 15 January 2015 to provide a voice for people who are living with a diagnosis of dementia and to reach out to others who have dementia.
Today Dementia NI is a membership organisation led by people with dementia who are developing empowerment groups across Northern Ireland, with support from staff and volunteers.
Members attend empowerment meetings as well as travel in their local area to give talks at events. Some members are unable to attend regular meetings but will continue our work by contributing at external meetings and groups, giving talks and sharing their experiences.
Anyone with a diagnosis of dementia can become a member of Dementia NI.
The NIHR Clinical Research Network: Diabetes supports the delivery of diabetes research studies across England, to achieve benefits for people with diabetes, or at risk of developing diabetes, through excellence in clinical research. NIHR CRN: Diabetes is part of the national CRN Coordinating Centre. Fifteen NIHR Local Clinical Research Networks coordinate the delivery of research studies.
Diabetes UK is the leading charity that cares for, connects with and campaigns on behalf of every person affected by or at risk of diabetes.
There are currently 3.8 million people in the UK with diabetes, including an estimated 850,000 people who have Type 2 diabetes but do not know it.
We help people manage their diabetes effectively by providing information, advice and support.
We campaign with people with diabetes and with healthcare professionals to improve the quality of care across the UK’s health services.
We fund pioneering research into care, cure and prevention for all types of diabetes.
We work to stem the rising tide of Type 2 diabetes – through risk assessment, early diagnosis, and by communicating how healthy lifestyle choices can help many people avoid or delay its onset.
Membership is open to any organisation or group promoting patient, carer and public involvement in health and social care research in the region. This includes NIHR, NHS, voluntary, patient led research groups and partner organisations.
Membership includes public involvement leads and patient representatives from NIHR and AHSN organisations in the east of England region. The remit of the group is to align regional public involvement strategies, plans and resources to deliver NIHR priorities in the region.
The Service User Research Forum is a group of lay individuals who are interested in planning and carrying out research into Healthcare Associated Infections and Antimicrobial Resistance. The group is based at the University of West London.
Health and Care Research Wales is a national organisation funded by Welsh Government. It provides an infrastructure to support and increase capacity in research and development, runs a range of funding schemes and manages resources to promote and deliver research in Wales.
We aspire to create an environment where the population of Wales is pro-actively engaged with research, putting the citizen at the heart of creating new knowledge and putting new knowledge into practice.
The DH stated intention is that local Healthwatch will:
Healthwatch Portsmouth is a service for people accessing health and social care in the city, offering:
Our Healthwatch orgainsation aims to put evidenced based research and engagement activity at the centre of what we are doing. We work in partnership with the University of Portsmouth to make sure that we have a academic input into our research. More information about the research we have done so far can be viewed in our development report at: https://docs.google.com/file/d/0B_5h0-othKJrNzdIT1QwQmVwT0U/edit?pli=1
Heart of England NHS Foundation Trust is one of the largest Hospital Trusts in England.
It includes Birmingham Heartlands Hospital, Solihull Hospital and Community Services, Good Hope Hospital in Sutton Coldfield and Birmingham Chest Clinic. We also run a number of smaller satellite units, allowing people to be treated as close to home as possible.
The Trust is a world leader in tackling MRSA and specialises in treating patients suffering from a wide range of illnesses including heart and kidney disease, cancer, HIV and AIDS, as well as respiratory conditions like Cystic Fibrosis. We also have expertise in premature baby care, bone marrow transplants and thoracic surgery.
Our dynamic organisation originally developed from Little Bromwich Hospital, a fever hospital and sanatorium on the outskirts of Birmingham. As East Birmingham District General Hospital, it acquired the Marston Green Maternity Hospital and became the first acute trust in Birmingham in 1992.
The IMPACT and Psoriasis Research User Group (RUG) is a group of individuals who have an active interest in psoriasis, either living with psoriasis themselves or living with someone who has psoriasis. The group has been established to ensure that the views of people with psoriasis are considered to both improve the quality of our research studies as well as making sure the work is beneficial, relevant and of a high standard.
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.
We are part of the National Institute for Health Research (NIHR)
INHA’s vision is to support families affected by prematurity. This will be achieved by advocating increased awareness, improved pre-conceptual and ante-natal education, equitable and standardized neonatal care and improved long-term care for both the premature baby and the family.
Our objective, through consultation with global networks of prematurity groups, healthcare professionals, educators, political decision makers and industry stakeholders is to foster the exchange of information, provide education to healthcare professionals and families and with one collective voice, to provide the platform for a coordinated and integrated program of collaborative support in the field of neonatal care in Ireland.
The King’s College London has a Stroke Research Patients and Family Group which was established in 2005. It brings together stroke researchers and people who have had a stroke and their family members who take part in the research. Current membership is about 35 and around 20 individuals regularly take part in the Group’s six-weekly meetings. The Group is convened by Dr Chris McKevitt.
Leeds Involving People (LIP) began under it’s former name – Leeds Involvement Project in 1994, and was established to support service user and carer involvement in planning community care services.
LIP was set up to promote the representation of service users and carers in the planning, delivery and monitoring of services; to advise statutory and other agencies on the development of policy and good practice on user and carer involvement, in order to improve the conditions of life for the residents of Leeds.
LIP’s priority is around building a strong membership base representing a diverse range of adult users and carers, across all ages, disabilities, gender, race, ethnicity, faith and sexuality so it is in a good position to represent and advise on good practice as “experts by experience”.
Rapid creation and dissemination of trustworthy recommendations to the point of care: Collaborative network approach
* Wiki (means rapid in Indonese) Recommendations and evidence summaries composed as synopses
The WikiRecs project was established to drastically reduce the time it takes critical practice-changing evidence to reach patients. WikiRecs is a collaborative process including all key stakeholders to rapidly produce evidence summaries and trustworthy clinical practice recommendations. These recommendations are published as clinician-friendly synopses in medical journals and further disseminated to the point of care through innovative tools for decision support. The target is to have synopses and decision support tools available to clinicians within 90 days of identification of potentially practice-changing evidence.
Professional organisations face major hurdles in developing, disseminating and updating systematic reviews and guidelines. Collaborative networks of expert clinicians, patients and methodologists in partnership with medical journals can do this work far more efficiently and represent a potentially disruptive innovation necessary to provide clinicians and patients with recommendations based on the best current evidence.
Mental health social enterprise controlled by people with lived experience of mental emotional and spiritual distress
Service user controlled provisions:
Pre and post registration professional education, training
Collaborative and emancipatory research
Consultancy and advice
Peer support and personal development
Capacity building for collaboration
Partnership and co-production
Service improvements and innovations
Campaigning and advocacy
The Mental Health Research Network is part of the National Institute for Health Research and our mission is to help make research about mental health happen within the NHS in England.
We work with everyone who needs to be involved in research projects – researchers, mental health professionals, people with experience of mental health problems, their families and research and development staff based in NHS trusts.
We support studies that are based within mental health services, within social care services and within primary care services.
The West Hub covers the whole South West from Gloucester, over to Hampshire and down to Cornwall. We have a steering group of service user and carers from across the region who ensure patient and public involvement happens in our area. We often have both paid and voluntary opportunities so if you would like to be on our mailing list please e-mail email@example.com with your details.
MindTech Healthcare Technology Co-operative is a national centre focused on the development of new technology for mental healthcare. MindTech brings together patients, healthcare professionals, researchers and industry to identify unmet clinical needs and develop and test a range of new technologies. We are currently looking at technologies for dementia, mood disorders such as depression and neurodevelopmental disorders such as Tourette Syndrome and ADHD (Attention deficit hyperactivity disorder). However, we are interested in all aspects of mental health.
The Multiple Sclerosis (MS) Society is the UK’s leading MS charity. Since 1953, we’ve been providing information and support, funding research and fighting for change. We fund research, give grants, campaign, provide information and support, invest in MS specialists and lend a listening ear to those who need it.
The MS Society is the largest source of MS research in the UK. Currently we are funding 80 world-class research projects worth over £20 million. With more MS research being carried out than ever before the MS Society are committed to funding research into a wide range of topics including stem cells, immunology, symptom relief and MS services.
Our Biomedical Research Centre (BRC) helps scientists from King’s College London and doctors, nurses and other health professionals from Guy’s and St Thomas’ Hospital to do research together.
Research is needed to gain new knowledge about illnesses, treatments and tests so that we can provide better care for local people.
We welcome everyone’s input and support. We don’t just need people to take part in clinical trials – we need members of the public to give us their views on what we should be researching and how we should be doing it.
The NIHR Brain Injury HTC is dedicated to identifying areas of unmet need for developing technology-based solution amongst patients of all ages with Traumatic (TBI), Acquired (ABI) or Developed (DBI) Brain Injury.
The HTC works with patients, carers, NHS, charities, academia, inventors, SME’s and business angels to support the development of new medical devices and healthcare technologies improving the effectiveness and quality of healthcare services.
The National Institute of Health Research (NIHR) Collaborative Leadership for Applied Health Research and Care (CLAHRC) East Midlands aims to bridge the gap between what healthcare researchers learn about how to improve the services the NHS delivers and that knowledge being put into practice. This is achieved through collaboration between the academic partners, patients, the general public and the region’s NHS Organisations. Proactive partnership working ensures that knowledge is shared as widely as possible and that quality of healthcare research improves with services improving based on the research findings resulting in better outcomes for patients.
The NIHR CLAHRC East of England is a collaboration between the Universites of Cambridge, East Anglia and Hertfordshire and the Cambridgeshire and Peterborough NHS Foundation Trust in partnership with a wide range of Eastern Region Health and Service Providers.
The National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) North Thames is a collaboration between world leading universities, the NHS, University College London (UCL) Partners, local authorities, patients, the public, industry and charities. Our aim is to improve health outcomes and reduce inequalities through world class applied health research. NIHR CLAHRC North Thames covers north central and north east London; south and west Hertfordshire; south Bedfordshire; and south west and mid Essex. The Director of the NIHR CLAHRC North Thames is Professor Rosalind Raine. Rosalind is Professor of Health Care Evaluation and the Head of the Department of Applied Health Research at UCL. She is also Assistant Director of Research and Development at the UCL Joint Research Office (a partnership between UCL, University College London Hospitals (UCLH) and Royal Free Hospitals NHS Foundation Trusts).
NIHR CLAHRC Oxford is a five-year programme funded by the National Institute of Health Research (NIHR) and matched funds provided by local health and social services. It aims to create lasting and effective partnerships across health and social care organisations, universities to improve the services we can deliver for patient benefit.
Hosted by the Oxford Health NHS Foundation Trust our funding runs until 2019.
Our partners are:
Aylesbury Vale Clinical Commissioning Group, Buckinghamshire County Council, Chiltern Clinical Commissioning Group, Health Education Thames Valley, Oxford Academic Health Consortium, Oxford Academic Health Science Network, Oxford Brookes University, Oxford University Hospitals NHS Trust, Oxfordshire Clinical Commissioning Group, Oxfordshire County Council, Said Business School, Thames Valley Local Area Team, University of Oxford departments of Psychiatry, Orthopaedics, Rheumatology & Musculoskeletal Sciences, Population Health, Primary Care Health Sciences, Biomedical Engineering and Medicine.
Our research themes are
1. early intervention and service redesign
2. health behaviours and behavioural interventions
3. patient experience and patient reported outcomes
4. better management of medical-psychiatric comorbidity
5. patient self-management of chronic disease
The National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) for the South West Peninsula – or PenCLAHRC – undertakes high-quality applied health research focused on the needs of patients and supports the translation of research evidence into practice in the NHS.
NIHR CLAHRC West Midlands is a five-year programme funded by the National Institute of Health Research (NIHR) and matched funds provided by local health and social services. The programme builds on the successful CLAHRC for Birmingham & Black Country pilot with a mission to create lasting and effective partnerships across health and social care organisations, universities (Birmingham, Keele and Warwick) to improve the services we can deliver for patient benefit. For more information about us, download our launch document.
The Vision for CLAHRC YH: We will undertake high quality applied research and evidence based implementation that is responsive to, and in partnership with, our collaborating organisation, patient, carers and the public.
The outcome being an improvement in both the health and wealth of the population of Yorkshire and Humber.
The CLAHRC YH Principles
Engagement: We believe that meaningful engagement delivers successful collaboration that has an impact. Through communicating our passion for the work we do, we will develop ownership of the CLAHRC YH within individuals and organisational partners.
Co-production: We believe that all people have a right, if they wish, to be involved in the organisation and delivery of health and health research. Through co-production we will support the key stakeholders in our work to contribute to the development of better knowledge, healthcare services and products.
Capacity building: We believe that people are innovative and if empowered can reach their potential. Through our capacity building work we will support individuals, teams and organisations to increase their research activity, and through this, the health and wealth of Yorkshire and Humber.
Addressing health inequalities: We believe that everyone has an equal right to be as healthy as they can be and have equal access to healthcare. Through implementing our Health Inequalities strategy we will strive to reduce inequalities.
The Southampton National Institute for Health Research (NIHR) Clinical Research Facility is a dedicated facility to provide a comfortable and safe environment for members of the public to participate in clinical trials. It is a superb clinical environment with specialist equipment and expertise. The work focuses on early phase trials, which test new treatments or interventions in a small number of patients. These trials assess safety, side effects and whether the treatment or intervention works and is better than the existing options.
The Biomedical Research Centre aims to improve the lives of the nation by taking new discoveries, treatments and technologies into the clinic. The major focus of the centres research is in nutrition and respiratory research. There is also a lot of research around improving health-related behaviours in patients and the public, for their own and for the NHS’s benefit.
The NIHR Clinical Research Network is the clinical research delivery arm of the NHS. We operate nationally across England through a national coordinating centre and 15 local branches delivering research in the NHS across all disease areas. The NIHR Clinical Research Network: Thames Valley and South Midlands is hosted by Oxford University Hospitals NHS Foundation Trust and covers Berkshire, Buckinghamshire, Milton Keynes and Oxfordshire.
The NIHR, Evaluation, Trials and Studies (NETS) programmes fund valuable independent research for health and social care decision-makers. These programmes are a key part of a portfolio of work managed by the NIHR Evaluation, Trials and Studies Coordinating Centre (NETSCC), based at the University of Southampton. We manage the identifying, prioritising, funding, delivery, publication, and dissemination of high-quality research and lead other NIHR initiatives to meet the needs of the public, patients and the NHS.
Our programmes form an essential component of health research in the UK, and their projects’ results provide information of immediate value to healthcare decision- and policy-making. At NETSCC, we strive to identify opportunities to add value at every stage and every level of the research process. One way that we do this is by using a ‘needs-led, science-added’ approach – a set of principles intended to ensure that the research is of the highest possible value to decision-makers, and that it provides real benefits to patients, the NHS and public health. Our panels and boards apply knowledge, expertise and methods to support the scientific quality of proposals and funded research to ensure that it answers important questions relevant to clinicians, patients and the public.
NIHR Imperial Biomedical Research Centre (BRC) is one of the biggest BRCs and undertakes translational research. The Imperial Patient Experience Research Centre is a multidisciplinary research unit aiming to understand patient experience and involvement.
The National Institute for Health Research (NIHR) Leicester Respiratory Biomedical Research Unit (BRU) is a partnership between the University Hospitals of Leicester and University of Leicester. In 2012 the Respiratory Research Department became part of a multi million pound government investment by the NIHR, to become one of only twenty BRU’s within England. The Unit will focus on promoting the development of new and effective therapies for the treatment of respiratory diseases including severe asthma and chronic obstructive pulmonary disease (COPD).
The NIHR Leicester – Loughborough Diet, Lifestyle and Physical Activity Biomedical Research Unit (BRU) will focus on improving health for patients with long term conditions such as diabetes by using and improving upon therapeutic lifestyle interventions. For example, these interventions could increase the amount of movement and physical activity people take part in, reduce time in sedentary behaviours, and use other approaches such as the interplay of exercise and appetite control, and minimising weight re-gain after bariatric (such as gastric band) surgery.
This new BRU is a collaboration between Loughborough University, one of the leading national institutions in exercise research, University Hospitals of Leicester and the University of Leicester. It provides an opportunity for researchers in the East Midlands to become some of the leading experts internationally in research into lifestyle, and in particular physical activity interventions to both prevent and treat diseases such as diabetes. The funding will create nearly thirty new research posts.
The NIHR Biomedical Research Centre at Moorfields Eye Hospital NHS Foundation Trust and the UCL Institute of Ophthalmology (NIHR Moorfields BRC) provides support for translational research leading to the rapid track delivery of new diagnostic methods and therapies, developed both internally and in partnership with other organisations.
As of April 2017, there will be 20 BRC’s nationally. The NIHR Moorfields BRC is the only one solely dedicated to research into eye health and the treatment and prevention of sight loss conditions.
The Nottingham Biomedical Research Centre (BRC) is improving the health of millions of people with common diseases like asthma and arthritis. We drive innovation in experimental science and translate research into breakthrough treatments, new technologies and advanced medicines.
At the heart of the Nottingham BRC is our internationally renowned expertise in Magnetic Resonance Imaging (MRI).
Our world-leading research is in:
The BRC strengthens Nottingham’s position as a leading city for research and innovation, bringing together world-leading scientists in a partnership hosted by Nottingham University Hospitals NHS Trust with the University of Nottingham and supported by Nottinghamshire Healthcare NHS Foundation Trust and Sherwood Forest Hospitals NHS Foundation Trust.
We are a partnership between University of Nottingham, Nottingham University Hospitals NHS Trust and Medical Research Council Institute of Hearing Research. We are funded by the National Institute for Health Research. We represent the only unit of its kind which is dedicated to applied research into many kinds of hearing-related issues. We focus on the following themes of research:
•Tinnitus (‘ringing in the ears’ – the sensation of sounds coming from inside the body).
•Support for people with hearing loss (particularly with regards to age-related hearing loss, use of hearing aids and alternative hearing devices)
•Advanced brain imaging and neuroscience, to understand how the brain processes sounds. This is to develop objective measures of hearing loss and tinnitus to inform how we improve patient outcomes
•Cochlear implantation (for profoundly deaf adults and children)
Our vision is to create new knowledge through translational research (research that can result in improvements in healthcare) that will relieve the burden of disability arising from hearing-related problems.
The National Institute for Health Research (NIHR) Oxford Biomedical Research Centre (BRC) is based at the Oxford University Hospitals NHS Trust and run in partnership with the University of Oxford. Biomedical Research Centres are part of the Government’s initiative to improve the translation of basic scientific developments into clinical benefits for patients and to reinforce the position of the UK as a global leader in healthcare related research. The Oxford BRC is a partnership that brings together the research expertise of the University of Oxford and the clinical skills of staff of Oxford University Hospitals NHS Trust with the aim of supporting translational research and innovation to improve healthcare for patients. It works across all disease areas.
The NIHR Oxford Biomedical Research Unit (BRU) focuses on musculoskeletal disease and is a partnership smaller than, but similar to, that above, and also funded by the NIHR.
The National Institute for Health Research (NIHR) Oxford Cognitive Health Clinical Research Facility (CRF) provides a wide range of clinical and scientific resources and patient facilities to enable high quality translational neuroscience studies.
The NIHR Oxford Health BRC is a partnership between Oxford Health NHS Foundation Trust and the University of Oxford.
We aim to bring the best science to the complex problems of mental disorders and dementia. These conditions are major causes of global disability and urgently need better treatments. Our patients deserve the same research excellence as in other areas of healthcare, and will help inform our research at each key step. We aim to transform discovery science into new treatments which will deliver personalised, precision care. We will harness digital and new technologies so that our solutions can have global reach.
The National Institute for Health Research (NIHR) funds Research Design Service East Midlands (RDS EM) which is one of 10 regional services across England providing design and methodological support to health researchers who are developing research funding applications. RDS EM supports research teams to develop and submit high quality applied health and social care grant applications to NIHR and other open, national, peer-reviewed funding programmes.
The National Institute for Health Research (NIHR) funded Research Design Service (RDS) East of England (EoE) is one of 10 regional services across England providing design and methodological support to health researchers who are developing research funding applications. RDS East of England supports research teams to develop and submit high quality applied health and social care grant applications to NIHR and other national peer-reviewed funding programmes.
The National Institute for Health Research (NIHR) funded Research Design Service (RDS) London is one of 10 regional services across England providing design and methodological support to health researchers who are developing research funding applications. RDS London supports research teams to develop and submit high quality applied health and social care grant applications to NIHR and other national peer-reviewed funding programmes.
The National Institute for Health Research (NIHR) funded Research Design Service South Central (RDS SC) is one of 10 regional services across England providing design and methodological support to health researchers who are developing research funding applications. RDS SC supports research teams to develop and submit high quality applied health and social care grant applications to NIHR and other national peer-reviewed funding programmes.
The National Institute for Health Research (NIHR) funded Research Design Service South East (RDS SE) is one of 10 regional services across England providing design and methodological support to health researchers who are developing research funding applications. RDS SE supports research teams to develop and submit high quality applied health and social care grant applications to NIHR and other national peer-reviewed funding programmes.
The National Institute for Health Research (NIHR) funded Research Design Service West Midlands (RDS WM) is one of 10 regional services across England providing design and methodological support to health researchers who are developing research funding applications. RDS WM supports research teams to develop and submit high quality applied health and social care grant applications to NIHR and other national peer-reviewed funding programmes.
The National Institute for Health Research (NIHR) funded Research Design Service Yorkshire and the Humber (RDS YH) is one of 10 regional services across England providing design and methodological support to health researchers who are developing research funding applications. RDS YH supports research teams to develop and submit high quality applied health and social care grant applications to NIHR and other national peer-reviewed funding programmes.
The NIHR School for Social Care Research has a remit to commission and undertake research to add to the evidence base and help improve adult social care practice in England. We were established in 2009 and include 5 universities across England, namely, the London School of Economics and Political Science (the host organisation), and the Universities of Bristol, Kent (covering the PSSRU and the Tizard research centres), Manchester, and York. We also commission research from other universities and research active organisations.
Dedicated National Institute for Health Research (NIHR) facility for clinical research within the NHS, offering support and patient facilities to researchers. Both day and overnight facilities available at both the Royal Hallamshire and Northern General hospital sites for helathy volunteer and patient studies.
The Clinical Research Facility is a joint venture between the University of Sheffield and Sheffield Teaching Hospitals Foundation Trust.
NIHR/Wellcome Trust Imperial Clinical Research Facility (CRF) is based at Hammersmith Hospital and is the main clinical research centre at Imperial College Healthcare NHS Trust (ICHNT).
We carry out research into a wide range of conditions, including cancer, nutrition and pulmonary hypertension.
The North and East Yorkshire and Northern Lincolnshire Comprehensive Local Research Network are currently one of 25 Local Research Networks in England. We are dedicated to promoting and expanding research so that all patients and healthcare professionals in our region are able to participate in, and benefit from, clinical research in all areas of disease and healthcare.
We are a large acute hospital and the Major Trauma for the Southwest, specialising in Neurosurgery and Trauma-Orthopaedics.
The North East Stroke Research Network aims to improve the speed, quality, and integration of research, ultimately resulting in improved patient care.
The North West People in Research Forum is devoted to supporting patient and public involvement (PPI) and public engagement (PE) in health and social care research in the North West of England.
The Forum was launched as a membership organisation in early 2011. Its membership is a diverse group of patients, public, service user researchers, researchers from universities and hospital trusts, research managers, study coordinators, research nurses, and patient and public involvement and engagement specialists. It also has a wide organisational membership, including all of the Clinical Research Networks and Comprehensive Local Research Networks in the North West, as well as a number of university faculties, hospital trusts, charities and patient and public involvement groups.
The Forum is run by an Executive Committee that is an equal partnership of patients and public, and people who work in health and/or social care research. It is funded by the North West NHS Research & Development team, the North West Research Design Service, and the Cheshire & Merseyside and Cumbria & Lancashire Comprehensive Local Research Networks.
The Executive Committee establishes working groups to take forward prioritised objectives. The Forum currently has communications, training and events working groups, which are also made up of equal partnerships of public and ‘professional’ members.
Nottingham University Hospitals NHS Trust (NUH) is based in the heart of Nottingham on three separate sites around the city. We provide services to over 2.5 million residents of Nottingham and its surrounding communities. We also provide specialist services for a further 3-4 million people from across the region.
Queen’s Medical Centre (QMC) is our emergency care site, where our Emergency Department (A&E), Major Trauma Centre and the Nottingham Children’s Hospital are. Nottingham City Hospital is our planned care site, where our cancer centre, heart centre and stroke services are based. Ropewalk House is where we provide a range of outpatient services, including hearing services.
We have achieved a national and international reputation for many of our specialist services, including stroke, renal, neurosciences, cancer services and trauma.
Research and innovation are rooted in our clinical practice and our research findings lead to continued improvements in the quality of care and treatments available for all our patients. We are at the forefront of many research programmes and new surgical procedures. In partnership with the University of Nottingham, we operate two NIHR (National Institute for Health Research) Biomedical Research Units – in hearing and deafness and in digestive diseases. As a teaching trust we have a strong relationship with our colleagues at the University of Nottingham and other universities across the East Midlands, including Loughborough University, where we are part of the Olympic Legacy project. We play a vital role in the education and training of doctors, nurses and other healthcare professionals.
The National Institute of Health Research (NIHR) Collaboration forLeadership in Applied Health Research and Care (CLAHRC) for Nottinghamshire, Derbyshire and Lincolnshire (NDL) is a health research collaboration between the University of Nottingham and NHS organisations. Our focus is clinical research into mental health, stroke rehabilitation, children and young people and older people’s health and wellbeing.
We are hosted by Nottingham, Derbyshire, Lincolnshire Collaboration for Leadership in Applied Health Research and Care (CLAHRC), Trent Comprehensive Local Research Network (CLRN) , National Institute for Health Research (NIHR) Research Design Service (RDS) East Midlands.
Forum for patients, public, clinicians, patient and public involvement/engagement leads, researchers and anyone interested in clinical research to meet and discuss opportunities for Patient and Public Involvement, Engagement and Participation.
Nowgen is a centre of excellence in public engagement, education and professional training in biomedicine.
We are part of the Manchester Biomedical Research Centre (MBRC) within the Research and Innovation Division of Central Manchester University Hospitals NHS Foundation Trust and the Faculty of Medical and Human Sciences at The University of Manchester.
Nowgen also has close links and collaborations with many other academic and clinical departments, institutes, organisations and businesses.
CHSS carries out high quality health services research, with local, national and international professional partners, our goal is to improve the links between research, policy and practice. CHSS’s main strength lies in the extensive knowledge and skills of its staff. The team carry out research in the following diverse fields; Primary Care, Public Policy, Health Psychology and Palliative Care.
An integral part of CHSS is the Opening Doors to Research Group which is made up of members of the public who act as a ‘critical friend’ to CHSS researchers and students.
The Oxford Academic Health Science Network brings together the NHS, universities, business, patients and the public to promote best health for our population and prosperity for our region.
Breaking down traditional organisational boundaries and building stronger relationships between industry, scientific and academic communities – coupled with better knowledge exchange – will bring lasting benefits as best practice is spread quickly and widely across the NHS.
The Nuffield Department of Primary Care Health Sciences has been part of the Medical Division of the University of Oxford since 1998.
The University was ranked first in the UK (REF) in 2014. We undertake internationally acclaimed teaching and research that improves the primary care that your GP practice delivers. Our department was ranked the top centre for primary care research in the UK in the 2008 (also 1996 and 2001) National Research Assessment Exercise.
Our research is led by internationally renowned scientists; many of whom are practicing GPs. We cover the broad range of issues that you might expect to consult your GP about including behavioural medicine, cancer, cardiovascular and metabolic diseases, childhood illness, infection, international health, and health experience.
In just the past 5 years our research has changed NICE clinical guidelines in many areas, including research that has identified early signs of serious illness in children, enhanced the diagnostic pathways for diabetes, heart failure and for hypertension, improved the recognition and treatment of stroke risk in atrial fibrillation, and altered health policy on smoking cessation to name but a few.
The Palliative Care Studies Advisory Group was set up in 2009 in order to give advice and guidance to a Department of Health project about ‘Transitions to palliative care for older people in acute hospitals’. The aim in setting up the group was to harness the skills and perspectives of interested members of the public and service users in order to improve the design, implementation, and dissemination of the research.
The Patient Experience Library holds the whole of the UK’s collective intelligence on patient experience and patient/public involvement, with over 40,000 documents from local Healthwatch, national health charities and think tanks, academic institutions and government bodies. It is the essential starting point for researchers asking “what do we already know?”.
Patients understand their disease and lifestyle needs better than many medical professionals. Patients have important research ideas about how best to improve quality of life, manage symptoms, offer existing treatments, or develop new interventions. Often these ideas differ from those prioritised by academia or the pharmaceutical industry.
The Patient Led Research Hub (PLRH) works in partnership with patient organisations to develop and co-produce their own research ideas. We provide academic expertise in all areas of research design and delivery, with the ethos to support any technically feasible research idea. Patients maintain an active, collaborative management role throughout the study, ensuring the project focuses on what’s important to them.
The PLRH was established in May 2015 by patients and members of the Cambridge Clinical Trials Unit from the University of Cambridge, and the Cambridge University Hospital NHS Foundation trust. PLRH strategy and governance are reviewed by the Cambridge Biomedical Research Centre, and the Cambridge University Health Partner’s Patient and Public Involvement Research Oversight Group.
People in Health West of England is a collaborative initiative supporting public involvement in health in our region. Our vision is that in five years’ time patients and the public will be central to health improvement in the West of England. Our work includes:
People in Health West of England is funded by four partner organisations that recognise the importance of working actively with patients, service users, carers, family members and voluntary and community groups. The partner organisations include NHS and other health and social care providers, service commissioners, local authorities, health and social care professionals and researchers. The four main partners are:
People in Health West of England promotes innovative and effective public involvement in research, innovation and service improvement.
Portsmouth Hospitals NHS Trust is one of the largest acute hospitals trusts in the country. We provide a full range of acute secondary care services to a local population of 650,000 people, as well as specialist services to a wider population in excess of 2 million people. We also host the largest of the five Ministry of Defence Hospital Units in the UK. The Trust also has a significant reputation in research, development and innovation.
The National Institute for Health Research (NIHR) funded Research Design Service North East & North Cumbria is one of 10 regional services across England providing design and methodological support to health researchers who are developing research funding applications. Research Design Service North East & North Cumbria supports research teams to develop and submit high quality applied health and social care grant applications to NIHR and other national peer-reviewed funding programmes.
The National Institute for Health Research (NIHR) funded Research Design Service North West (RDS NW) is one of 10 regional services across England providing design and methodological support to health researchers who are developing research funding applications. RDS NW supports research teams to develop and submit high quality applied health and social care grant applications to NIHR and other national peer-reviewed funding programmes.
The National Institute for Health Research (NIHR) funded Research Design Service South West (RDS SW) is one of 10 regional services across England providing free design and methodological support to health researchers who are developing research funding applications. The RDS SW supports research teams to develop and submit high quality applied health and social care grant applications to NIHR and other national peer-reviewed funding programmes.
The Royal Marsden is a world-leading cancer centre specialising in diagnosis, treatment, care, education and research.
At The Royal Marsden we are committed to improving the outcomes for people with cancer through innovation and leading-edge practice.
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.
The Musculoskeletal Research Unit within the School of Clinical Sciences at the University of Bristol conducts health services research and clinical research.
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.
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:
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.
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 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:
Our postal address is: BM BOX 4845, LONDON, WCIN 3XX
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.
Sheffield Motor Neurone Disorders Research Advisory Group was set up in September 2009 to enhance patient and public involvement in motor neurone disorders research.
For further information please view our Terms of Reference
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.
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.
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 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 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
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.
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.
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
The Cleft Collective is the world’s largest cleft lip and palate research programme. The project is an initiative of the UK charity The Healing Foundation, supported entirely by voluntary contributions.
Our research aims to make significant progress towards answering three key questions:
(For the Plain language summary please see: http://www.comet-initiative.org/resources/PlainLanguageSummary). The COMET (Core Outcome Measures in Effectiveness Trials) Initiative brings together people interested in the development and application of agreed standardised sets of outcomes, known as ‘core outcome sets’. These sets represent the minimum that should be measured and reported in all clinical trials of a specific condition, and are also suitable for use in clinical audit or research other than randomised trials. The existence or use of a core outcome set does not imply that outcomes in a particular trial should be restricted to those in the relevant core outcome set. Rather, there is an expectation that the core outcomes will be collected and reported, making it easier for the results of trials to be compared, contrasted and combined as appropriate; while researchers continue to explore other outcomes as well. COMET aims to collate and stimulate relevant resources, both applied and methodological, to facilitate exchange of ideas and information, and to foster methodological research in this area.
The Health Foundation is an independent charity working to improve the quality of healthcare in the UK.
We want the UK to have a healthcare system of the highest possible quality – safe, effective, person-centred, timely, efficient and equitable. We believe that in order to achieve this, health services need to continually improve the way they work.
We are here to inspire and create the space for people to make lasting improvements to health services.
We conduct research and evaluation, put ideas into practice through a range of improvement programmes, support and develop leaders and share evidence to drive wider change.
The McPin Foundation exists to transform mental health research by putting the lived experience of people affected by mental health problems at the heart of research methods and the research agenda.
We work in three main ways:
We are a network of service users, patients and carers with personal experience of living with pressure ulcers or being at risk of developing pressure ulcers. Our network aims are:
The network is supported by the Clinical Trials Research Unit at the University of Leeds but we have members from across the UK.
We are a small, friendly patient and public involvement (PPI) group based in East Yorkshire, with members who have experience of a range of health conditions including cancer, heart disease and diabetes.
We draw our members from both banks of the Humber, and we work with health researchers from Hull, East Yorkshire, Northern Lincolnshire and Goole. We also work with researchers from the Hull-York Medical School and local universities.
The Arthritis Research UK Epidemiology Unit/Manchester Musculoskeletal Biomedical Research Unit’s Research User Group (RUG) is a group of lay individuals who have an active interest in musculoskeletal health, either living with a musculoskeletal condition themselves or caring for someone who does.
Its main purpose is to assist the Arthritis Research UK Epidemiology Unit in all aspects of research. The group currently comprises of 11 members with a range of musculoskeletal conditions including Rheumatoid Arthritis, Juvenile Idiopathic Arthritis, Lupus, Osteoarthritis, Psoriatic Arthritis and Ankylosing Spondylitis and they meet every three months at the Wellcome Trust Clinical Research Facility in Manchester.
Autism@Manchester is a community of academics, clinicians, practitioners, autistic adults, parents of autistic children and family members working together to achieve quality research with real meaning for people with autism.
Our key aims are to bring academics, clinicians and other practitioners together with members of the autistic community to:
The University of Western Australia School of Population Health is a leading teaching, research and service organisation that influences health policy and practice. The Telethon Institute for Child Health Research is one of Australia’s largest research institutes dedicated to improving child Heath and well being through research. These two organisations run a joint one-of-a-kind Consumer and Community Participation Program.
We develop independent, multi-centre clinical trials for the treatment or prevention of skin disease. We are a collaborative network of dermatologists, dermatology nurses, health services researchers and patients throughout the UK and Ireland.
The UK Dermatology Clinical Trials Network (DCTN) helps to develop research ideas generated from our membership into fully funded studies. Suggestions can be put forward throughout the year to the UK DCTN co-ordinating centre (based at the Centre of Evidence Based Dermatology at the University of Nottingham). The Network is a Registered Charity (no. 1115745)
University Hospitals Bristol is a research active NHS Foundation Trust, consisting of 5 clinical divisions spanning 9 hospitals in central Bristol. All divisions are research active, and our specialities include research into cardiovascular disease, nutrition, cancer and haematology trials, emergency medicine, ophthalmology, rheumatology and paediatrics.
The Public Involvement in Research Group (PIRG) forms part of the Centre for Research in Primary and Community Care (CRIPACC) at the University of Hertfordshire. The PIRG offers a service to researchers in higher education and other institutions, bringing a lay perspective to research studies.
ViBIS was established in 2011 with the aim of developing a knowledge base for the involvement of patients and their relatives in the development of the Danish health care system.
Voice North is an organisation that aims to capture the public’s vast experience, ideas, opinions and expectations about research, innovation and policy developments which affect their lives.
The Wellcome Trust Edinburgh Clinical Research Facility (CRF) provides state-of-the-art facilities to support clinical research. We are based at three clinical sites in Edinburgh: the Western General Hospital, the Royal Infirmary of Edinburgh and the Royal Hospital for Sick Children. Our activities include a comprehensive education programme designed to equip staff with the skills to carry out research, including public involvement.
As part of promoting excellence in alcohol research, Wessex Alcohol Research Collaboration’s (WARC) mission is to encourage the involvement of people with an understanding of the impact of alcohol problems (lay experts) to help shape the research agenda.
West Anglia Comprehensive Local Research Network is part of the National Institute for Health Research Clinical Research Network.
The Clinical Research Network provides researchers with the practical support they need to make clinical studies happen in the NHS, so that more research takes place across England, and more patients can take part.
We are a service user controlled organisation which applies its research findings, which have a social perspective, in the field of women’s alcohol use. It collaborates in applied research with the university of Wolverhampton and has links with the universities of Plymouth and Bristol.