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CancerVOICES
CancerVOICES is a UK-wide network of people affected by cancer who are helping to shape the future of cancer care supported by Macmillan Cancer Relief
http://www.cancervoices.org.uk/
Care Services Improvement Partnership
The Care Services Improvement Partnership supports positive changes in services and in the wellbeing of vulnerable people with health and social care needs.
The Clinical Trial pages have been written for adult service users and carers and for people who run mental health clinical trials. They provide clear and simple information about how clinical trials work and what to expect if you take part in one. The goal is to help people make a decision about whether to take part in a clinical trial, as well as to encourage researchers to work in partnership with service users and carers to develop and run their clinical trials.
http://www.csip.org.uk/
Centre for Mental Health
The Centre for Mental Health (formerly Sainsbury Centre for Mental Health) is a charity that works to improve the quality of life for people with severe mental health problems. It carries out research, development and training work to influence policy and practice in health and social care.
http://www.centreformentalhealth.org.uk
Cerebra Research Unit
The Cerebra Research Unit responds to questions from families about therapies and treatments for disabled children. We provide summaries of the evidence to help families make decisions, and where the evidence is lacking we conduct clinical trials to assess the effectiveness of interventions
This is a real opportunity for you to get involved in research, please come in and see how you can make a difference by being part of what we're doing…
http://sites.pcmd.ac.uk/cerebra/index.php
CHAIN
CHAINs - Contact, Help, Advice and Information Networks - are online networks for people working in health and social care. They are based around specific areas of interest, and give people a simple and informal way of contacting each other to exchange ideas and share knowledge.
http://chain.ulcc.ac.uk/chain/index.html.
Cochrane Consumer Network
The Cochrane Consumer Network is part of the Cochrane Collaboration. It provides a coordinating network supporting consumers within Cochrane Groups, as well as working to improve the quality of reviews, and make reviews more accessible to consumers.
http://www.cochrane.org/consumers/about.htm
Cochrane Library
The Cochrane Library is an electronic publication designed to supply high quality evidence to inform people providing and receiving health care, and those responsible for research, teaching, funding and administration at all levels. The Cochrane Library includes: The Cochrane database of Systematic Reviews (CDSR), the Database of Abstracts of Reviews of Effectiveness (DARE) and the Cochrane Controlled Trials Register (CCTR). The Abstracts of Cochrane Reviews are available without charge on the internet.
http://www.cochrane.co.uk
Department of Health
This site contains material produced by and for the Department of Health. It includes press releases, and details of Department of Health Publications, as well as information about the Department of Health and NHS Executive.
http://www.dh.gov.uk
DIPEx
The DIPEx website contains interviews of individuals personal experiences of a variety of health conditions. You can watch, listen or read the interviews. The site currently covers cancers, heart disease, mental health, neurological conditions and screening programmes.
http://www.dipex.org/
Experimental Cancer Medicine Centre Network (ECMC) Consumer pages
The Experimental Cancer Medicine Centre Network (ECMC) is major network of Experimental Cancer Medicine Centres (ECMCs, established across the UK to drive the development of biomarkers and new anti-cancer treatments. This is a joint initiative between Cancer Research UK and the Departments of Health in England, Scotland, Wales and Northern Ireland.
These new consumer pages of the ECMC website have now been launched.
http://www.ecmcnetwork.org/ecmc/consumers/
Involvement Helpline
Milton Keynes Citizen’s Advice Bureau offers a specialist benefit and tax credit advice service called the Involvement Helpline. It provides confidential, personalised and professional advice to anyone who is considering paid or voluntary involvement with health or social care organisations that subscribe to the service
http://www.mkweb.co.uk/Citizens_Advice/DisplayArticle.asp?ID=55383
James Lind Alliance
A coalition of organisations representing patients and clinicians collaborating to confront important uncertainties about the effects of treatments.
http://www.lindalliance.org
Joseph Rowntree Foundation
The Joseph Rowntree Foundation is one of the largest independent social policy research and development charities in the UK. It supports a wide programme of research and development projects in housing, social care and social policy.
http://www.jrf.org.uk/
London School of Economics and Political Science (LSE)
The London School of Economics and Political Science (LSE) is one of the foremost social science universities in the world.
It is a specialist university with an international intake and a global reach. Its research and teaching spans the full breadth of the social sciences, from economics, politics and law to sociology, anthropology, accounting and finance and, as the 2008 Research Assessment Exercise found, it has the highest percentage of world-leading research of any university in the UK.
http://www.lse.ac.uk/
MS Society Research Network
The MS Society Research Network (RN) was launched in 2002. It has 148 members - all people who have experience of living with MS or caring for a person with MS.
http://www.mssociety.org.uk/research/research_network/index.html
National Cancer Research Network
The National Cancer Research Network (NCRN) is a managed research network dedicated to providing a world-class health service infrastructure to support cancer research in England. It is their aim that the number of patients entering clinical trials will be doubled in the
next five years.
http://www.ncrn.org.uk
National Co-ordinating Centre for Service Delivery and Organisation
The NHS Service Delivery and Organisation (SDO) Programme is a national research programme that has been established to consolidate and develop the evidence base on the organisation, management and delivery of health care services.
http://www.sdo.lshtm.ac.uk/
National Coordinating Centre for Health Technology Assessment
The programme works to provide all those who make decisions in the NHS with high-quality information on the costs, effectiveness and broader impact of health care treatments and tests.
Details of the different ways the public are involved in the HTA programme are outlined on their consumer pages. Service users and NHS Professionals can submit suggestions for topics to be considered for research funding online.
http://www.ncchta.org
National Electronic Library for Health - Specialist Library for Patient and Public Involvement
This Library aims to support the implementation of patient, user, carer and public involvement in health care by providing access, in one location, to the best information which is available on the Web.
http://www.library.nhs.uk/ppi/
National Institute for Health and Clinical Excellence (NICE)
The National Institute for Health Clinical Excellence (NICE) makes recommendations on treatments and care using the best available evidence. NICE is committed to producing guidance for the NHS that meets the needs of patients, carers and the public and that involves patients, carers and the public in its development.
There are opportunities for patient, carer and public involvement at a number of levels.
http://www.nice.org.uk/page.aspx?o=208935
National Institute for Health Research
The National Institute for Health Research is committed to establishing the NHS as an internationally recognised centre of research excellence through supporting outstanding individuals, working in world-class facilities, conducting leading-edge research focused on the needs of patients and the public.
http://www.nihr.ac.uk/
National Research Ethics Service (NRES)
National Research Ethics Service
The National Research Ethics Service works with colleagues in the UK to maintain a UK-wide system of ethical review that protects the safety, dignity and well being of research participants, whilst facilitating and promoting ethical research within the NHS.
http://www.nres.npsa.nhs.uk/
National Research Register
The National Research Register (NRR) is a database of ongoing and recently completed research projects funded by, or of interest to, the United Kingdom's National Health Service (NHS).
http://www.nrr.nhs.uk
NHS R&D Forum
The NHS Research and Development Forum is an organisation for
individuals and departments involved in the management and planning of R&D activities and in conducting R&D in health and social care. The
purpose of the Forum is to improve the environment for research within
organisations delivering health and social care by encouraging high
standards and providing support and communication networks.
http://www.rdforum.nhs.uk/
NIHR School for Social Care Research
The School for Social Care Research (NIHR SSCR), funded by the National Institute for Health Research (NIHR), formally began work in May 2009. Led by Professor Martin Knapp (LSE) and with a budget of £15 million over five years, the SSCR is a partnership between five leading academic centres of social care research in England. This follows the success of NIHR's first such research School – the NIHR School for Primary Care Research.
http://www.lse.ac.uk/collections/NIHRSSCR/Default.htm
PEAR: Public Health, Education, Awareness, Research Our Voices, Our Health: Involving young people in public health research
NCB have been running a small project in London to look at how young people could be involved in public health research, and have now been given some money by the Wellcome Trust (a charity) to set up the PEAR group, which will run for two years (2008-2010).
The project supports young people to contribute to UK public health research and decisions being made about public health issues
http://www.ncb.org.uk/pear/home.aspx
People in Research
People in Research helps members of the public make contact with organisations that want to actively involve them in clinical research. For example this could be by helping to decide what gets researched or possibly carrying out part of the research.
http://www.peopleinresearch.org/
PRIME Patient Experience Database
The purpose of the database is to make detailed informtion about patient experiences accessible to a wide population, particularly researchers.
http://www.prime-cfs.org
RDInfo
Providing the latest health related research funding information.
http://www.rdinfo.org.uk/
Research Register for Social Care
The Research Register for Social Care (RRSC)records social care research that has been subject to independent ethical and scientific review. This will include ongoing and completed research, and research carried out by students and practitioners. It can be searched to obtain summary details of the individual studies and links to further information about them.
http://www.researchregister.org.uk/
SCIE Networks
SCIE works closely with a large number of organisations that help them in their work.
http://www.scie.org.uk/networks/index.asp
Shaping Our Lives
Shaping Our Lives National User Network is an organisation run by service users.
http://www.shapingourlives.org.uk/
Shaping Our Lives networking website
This website is for finding out about what service user organisations are doing and also what non-service user organisations are doing for service users.
http://www.solnetwork.org.uk
Social Care Institute for Excellence (SCIE)
The role of SCIE is to develop and promote knowledge about good practice in social care. SCIE works with people and organisations throughout the social care sector to identify useful information, research and examples of good practice
http://www.scie.org.uk
Social Care Online
Social Care Online is a database of UK social care information. It covers research briefings, reports, government documents, journal articles, and websites and is updated daily.
http://www.scie-socialcareonline.org.uk
Social Care Research Ethics Committee
This website will give you information about the purpose of the Social Care REC, how you can apply for research ethics review, and who to contact for further help.
http://www.screc.org.uk/
Social Perspectives Network
The Social Perspectives Network is an independent organisation which is open to anyone interested in looking at mental distress in terms of people's social experience - how social factors may both contribute to people becoming distressed, and play a crucial part in promoting people's recovery. Social Perspectives Network is open to practitioners of all disciplines, service users / survivors, carers, policy makers, academics, educators, service managers and others who may be interested in these issues.
http://www.spn.org.uk
Strategies for Living
Strategies for Living is a programme of work aiming to promote and encourage the development of user/survivor empowerment through research, evaluation and information gathering. They have an Us as Experts( User led research forum) which is an email discussion group for service users and survivors undertaking or interested in research. The user led projects were completed in 2003 and the project summaries and final report is available on the website.
http://www.mentalhealth.org.uk
SURF
SURF was established to encourage greater public involvement in the field of infection research. For patients and the public SURF represents an opportunity to become more involved in the world of Healthcare Associated Infection (HCAI) research, and for the HCAI research community, SURF can act as a new resource providing researchers with a highly motivated pool of service users with a genuine interest in working to reduce HCAI.
http://www.hcaisurf.org/
TriMe (Trials in Mental Health)
The site is for the UK general public. It aims to:
* Give you information about mental health research that is
happening, so you can think about getting involved.
* Help you make informed choices about the best research for you.
* Improve recruitment into high-quality mental health research by
improving communication between you and the people running the
trials.
* Contribute to a better understanding of mental health research by
the public.
http://www.trime.org.uk
UK Clinical Research Collaboration
The UK Clinical Research Collaboration (UKCRC)is a new partnership of organisations which was established in response to growing concerns that the UK was not fully realising the clinical research potential offered by the NHS. The goal of the UKCRC is to create a clinical research environment that will ultimately benefit patients and the public.
http://www.ukcrc.org/
UK Clinical Research Network
The UK Clinical Research Network (UKCRN) was established to provide support for clinical research and to facilitate the conduct of randomised prospective trials and other well-designed studies. It is tasked with developing a world class infrastructure to support clinical research in the UK.
http://www.ukcrn.org.uk/index.html
UK Prostate Link
A gateway to quality-assessed informtion aimed at people with prostate cancer; people concerned about prostate cancer( such as carers, family members), and helthcare professionals providing their care.
http://www.prostate-link.org.uk
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