Folk.us Useful Information
We need you to get involved to make research into health and social care relevant, radical and really really useful
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For further information and advice contact Folk.us
Noy Scott House
Royal Devon & Exeter Hospital
Tel: 01392 403049
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This is a collection of useful information including guidance and publications which have been produced by Folk.us.
Publications and Guidance
- Folk.us: Communication Strategy, April 2009
Communication Strategy (pdf)
- Wyatt, K.M. & Purtell, R.A. (2002). Research Governance in health made simple: A brief introduction to the Research Governance Framework for Health and Social Care 2001. Now available through Involve.
- Finding a way to pay in the UK: Methods and mechanisms for paying service users involved in research [View Article]
Rickard W. and Purtel R. (2011)l
Volume 26, Number 1, January 2011 of the Disability & Society Journal
- Other sources of information about paying people....
- Folk.us A rough guide to writing a research proposal.
Application procedure real form (pdf)
- Thorne, L., Purtell, R., Baxter, L. (2002). Knowing How: A guide to getting involved in research. University of Exeter, Exeter.
- Baxter, L., Thorne, L. & Mitchell, A. (2001). Small Voices Big Noises: Lay involvement in health research: Lessons from other fields. Washington Singer Press, Exeter.
Executive summary (pdf)
- Understanding Users as Trainers - Facilitators' and Trainers' Voices. Understanding users as trainers - Users' voices.
- Purtell, R., Baxter, L., & Mitchell, A. (2003). 'Doing Research Together' Users as Researchers in Health and Social Care. London, Venture Press.
- Critical perspectives on user involvement (November 2011)
Should we? Could we? Measuring Involvement
Purtell R., Rickard W., & Wyatt K.
The Policy Press
ISMN 978 1 84742 751 9
- White, A., Purtell, R. & Barr, G. (2001). 'Consumer Involvement In CAM Research'. Complementary Therapies in Medicine. Elsevier Science Ltd, London.
The weblinks are a selection of national and local sites which may be useful.
Cerebra Research Unit (CRU)
The CRU carries out research into interventions for children with disabilities and they aim to involve parents, carers and children in all aspects of the research that they undertake. Their website has information about research and how you could get involved, and some fun pages especially for kids. There is also a forum where you can talk to other parents and carers.
BBC - Devon Community Life
Personal story about a woman who became blind, her experiences and her eventual involvement with the Visual Impairment Research Team, who are investigating people's experiences on receiving a diagnosis of permanent sight loss.
Living Options Devon
A local voluntary organisation working with people with sensory and/or physical disability and deaf people who use British sign language to identify needs, challenge attitudes and achieve change. They encourage and enable disabled people to take a pro-active role in their own community to promote equality and inclusion.
Royal Devon and Exeter Healthcare Trust research pages
This site gives a list of all the current and completed projects carried out by the Royal Devon & Exeter Healthcare Trust.
National & International
Be Evidence Based
A one-stop resource of key research findings from critically appraised social care research.
British Medical Journal
The general medical journal website.
Carers Research Partnership
This Partnership is a unique grouping of carers, service users, service providers and researchers who are working together in order to provide robust evidence regarding the needs of carers and service users, develop a joint research agenda and extend knowledge of the nature of caring, and especially of carers' roles.
Centre for Action Research in Professional Practice at Bath University
Their work aims to help the individual practitioner develop skills of reflective practice and to help organizational members develop communities of inquiry, as well as contribute to wider understanding of the place of inquiry in the development of professional practice.
Centre for Disability Studies (CDS)
CDS is an interdisciplinary centre for teaching and research in the field of disability studies at the University of Leeds. The Centre incorporates and develops the work of the Disability Research Unit and aims to promote international excellence within the field.
Centre for Ethnic Research (CRER), University of Warwick
CRER is based at the University of Warwick and is the major academic body in the UK for the research and teaching of aspects of race, migration and ethnic relations. Including projects that involve people from ethnic minorities.
Centre for Human Service Technology - Social Work Gateway
A list of websites relating to education, research and training that inform social work teaching and practice, including information on addiction, children and families, community care issues and disability. A good starting point if you are looking for ideas of organisations to investigate or contact.
The Cochrane Collaboration
This is an international organisation that aims to help people make well-informed decisions about health care by preparing, maintaining and ensuring the accessibility of systematic reviews of the effects of health care interventions.
Commission for Patient and Public Involvement in Health (CPPIH)
CPPIH is an independent, non-departmental public body, sponsored by the Department of Health. Its remit is to ensure that the public is involved in decision making about health and health services.
Community Psychology UK
Based in Manchester, it provides links to other sites and contacts relevant to Community Psychology in Britain and beyond, as well as some of their own material. It does not intend to present a view that is necessarily shared by all community psychologists in the UK, although they are open to contributions from such colleagues and comrades.
Department of Health
This is the Department of Health homepage providing information on current research projects.
Derbyshire Coalition for Inclusive Living
Disabled people working for full participation and equal living. Information about the group and research that they have carried out or been involved in.
Informed Health Online
Informed Health Online is produced by the Health Research and Education Foundation. The Foundation is a not-for-profit health promotion organisation based in Melbourne, Australia. It provides information and resource tools that enable people to keep up-to-date with reliable, evidence-based information. A key goal is to promote the accessibility of health information from the Cochrane Collaboration, based on Cochrane reviews and other reliable research on the effects of health care.
The Institute for Health Sector Development
An independent organisation working to support the specific needs of low and middle income countries. The Institute provides up-to-date information on best practice and the experience and lessons learned from practical projects and programmes.
Institute of Development Studies, Sussex
The Institute looks specifically at participation and user involvement and has a link to the catalogue of information in the Participation Reading Room. They provide training via seminars and workshops.
INVOLVE (formally known as Consumers in NHS Research)
INVOLVE aims to promote public involvement in NHS, public health and social care research. The organisation has a Support Unit, which offers advice and support to consumers, researchers and those working in the NHS about consumer involvement in research and development. This site has many useful links, particularly for people looking for support with research.
Joseph Rowntree Foundation
This website provides information about applying for funding and on current projects nationwide.
The King's Fund
The King's Fund is an independent health charity with the goal of supporting, promoting and improving the health of the people of London. They aim to achieve this by influencing health policy and stimulating good practice in service provision. The King's Fund works across the UK and internationally to tackle problems, promote mutual learning and disseminate new ideas.
The Mental Health Foundation
This is the biggest, most comprehensive website on mental health and mental illness in the UK, which includes the project 'Strategies for Living', in which all researchers had experience of mental health difficulties.
Mental Health Research Network
MHRN provides the infrastructure to support large scale, high quality research in mental health and social care. The network will support vital large-scale research, which will help to raise the standard of mental health and social care research throughout England. In addition, it will act as a central point of information and reference, connecting service users and carers to researchers and mental health professionals. The MHRN research will not only respond to government policy but will help guide practice and contribute to the understanding of mental illness and the increase of mental health in the UK.
Norah Fry Research Centre, Bristol
This organisation carries out research with and about people with learning difficulties. There are a number of good examples of working with people with learning difficulties on research projects.
The Nursing Research Unit
Information regarding the Patient and Public Involvement in Nursing and Midwifery research (P.I.N) project, which Folk.us is currently involved in.
Overseas Development Institute (ODI)
ODI is Britain's leading independent think-tank on international development and humanitarian issues. Their mission is to inspire and inform policy and practice which lead to the reduction of poverty, the alleviation of suffering and the achievement of sustainable livelihoods in developing countries. They work with partners in the public and private sectors, in both developing and developed countries.
People in Research
This site aims to help research organisations and researchers find members of the public to get actively involved in their work by enabling them to advertise their opportunities. Members of the public can search the opportunities database to see if there is any work that they are interested in getting involved in. They can also find out more about getting involved in research and the different ways that they can become involved by viewing and listening to videos of the experiences of others.
A source of information on social science research funded by the Economic and Social Science Research Council.
RDInfo | RDDirect | RDLearning
This is a trio of nationally available free services for those wishing to undertake research in the health and social care fields. They offer funding opportunities, research related training events and a bespoke service offering both general and more specific advice.
The Royal Association for Disability and Rehabilitation
Their mission is to promote change by empowering disabled people to achieve their rights and expectations and by influencing the way that disabled people are viewed as members of society. This organisation is run by and for disabled people in the UK.
The Sainsbury Centre for Mental Health (SCMH)
SCMH 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.
Service Users' Research Forum (SURF)
SURF is a user group for service users and survivors of mental illness who are interested or involved in high quality research and development. They are based within the Avon and Wiltshire mental health area of England.
Shaping Our Lives
Reports on a new, nine-month project being carried out in the UK jointly by Shaping Our Lives and Folk.us with funding from Involve named 'User Controlled Research - what is it and how is it to be done?'.
Social Care Institute for Excellence
SCIE promotes good practice in social care. This is done by reviewing knowledge to find out what works best, this knowledge is then shared with all kinds of people involved in social care. They have a number of very useful publications including 'Involving service users and carers in social work education' and 'Has service user participation made a difference to social care services?'.
South Yorkshire Funding Advice Bureau
Provides free, specialist help to community groups and voluntary organisations wanting to raise money. Their information workers can provide details of national and local charitable trusts and other non-statutory funders. They do not give detailed information about Local or Central Government funding.
The Swedish National Association for Social and Mental Health (RSMH)
RSMH is an organization for service users, carers and professionals who experience or are interested in mental and social health problems. Their goal is to affect politicians, care institutions and authorities in order to give people more influence and power over their lives, to improve the quality of care and support to people with mental health problems. (Need to be able to read Swedish, although there is an English 'About Us' page).
Tenants Participatory Advisory Service
The TPAS provides information, advice, training, consultancy, seminars and conferences on all aspects of involving tenants in their housing management. They are able to help find examples of tenants being involved in housing research.
The UK Cochrane Centre
The UK Cochrane Centre is now one of twelve Cochrane centres around the world, which provides the infrastructure for co-ordinating The Cochrane Collaboration. The Centre supports contributors to The Cochrane Collaboration in the United Kingdom, Ireland and some other countries.
The UK Medical Research Council (MRC)
MRC is a national organisation funded by the UK taxpayer. They promote research into all areas of medical and related science with the aims of improving the health and quality of life of the UK public and contributing to the wealth of the nation, by providing grants for research projects.
The University of Sheffield School of Health and Related Research (ScHARR)
ScHARR is a significant university based concentration of health related resources in Trent and one of the most important in the UK, who have been carrying out research about user involvement.