The first report of the Citizens Council (a lay panel) of the National Institute for Clinical Excellence was published, focusing on the factors which should be taken into account when decisions are made about clinical need.
Source: Determining 'Clinical Need': Report of the first meeting of the NICE Citizens Council, National Institute for Clinical Excellence (020 7766 9191)
Links: Report (pdf) | Press release
Date: 2002-Dec
Following consultation, the government announced changes to the way that topics are selected for examination by the National Institute for Clinical Excellence. It said the objective is to open up the process for selecting topics for appraisal, and to increase the participation of professional and patient groups in the selection process.
Source: Press release 4.12.02, Department of Health (020 7210 4850)
Links: DH press release | Summary of new arrangements (pdf) | Consultation paper (pdf)
Date: 2002-Dec
Patients should be treated as participants rather than subjects during clinical trials, researchers suggested: it was found that fewer than half of patients receiving a placebo as part of a clinical trial are informed about their treatment when the trial is over, despite government recommendations to ensure that that the public have confidence in, and benefit from, quality research.
Source: Zelda Di Blasi, Ted Kaptchuk, John Weinman and Jos Kleijnen, 'Informing participants of allocation to placebo at trial closure: postal survey', British Medical Journal 7.12.02
Links: Article | Press release
Date: 2002-Dec
Research into local authority services found that satisfaction surveys and focus groups have become more popular than some traditional methods of public participation, such as public meetings.
Source: Demelza Birch, Public Participation in Local Government: A survey of local authorities, Office of the Deputy Prime Minister (0870 1226 236)
Links: Report (pdf)
Date: 2002-Dec
A report concluded that, by adopting a health improvement model, primary care organisations can involve their local communities in empowering processes which have benefits for the development of the health and social capital of those communities.
Source: Gill Callaghan and Gerald Wistow, Public and Patient Participation in Primary Care Groups: New beginnings for old power structures, Nuffield Institute for Health/University of Leeds (0113 343 3946)
Links: Report (pdf)
Date: 2002-Oct
A new book argued that the involvement of older people as active partners in planning their future living arrangements, and elements of care support, must be at the heart of day-to-day practice, policy planning and design.
Source: Keith Sumner (ed.), Our Homes, Our Lives: Choice in later life living arrangements, Centre for Policy on Ageing, available from Central Books (020 8986 5488)
Links: Summary
Date: 2002-Oct
A new book examined different theories of childhood, children's rights and the relationship between children, parents and the state. Focusing on children looked after by the state, it reviewed the changing objectives of the care system and the extent to which children are involved in decisions about their care.
Source: Nigel Thomas, Children, Family and the State: Decision-making and child participation, Policy Press, available from Marston Book Services (01235 465500)
Links: Summary
Date: 2002-Oct
A report argued that if local authorities want to understand more about children in their care they need to encourage young people who have been in care to become involved in inspections.
Source: Pam Hibbert, Voices and Choices: Young people participating in inspections, Barnardo s (01268 520224), Social Services Inspectorate/Department of Health, Children s Society, Save the Children, National Children s Bureau, and First Key
Links: Summary (pdf)
Date: 2002-Oct
A new book presented a psychosocial examination of the changing relationships between users of services, professionals and managers in the welfare state, and challenged the current emphasis on consumer rights.
Source: Lynn Froggett, Love, Hate and Welfare: Psychosocial approaches to policy and practice, Policy Press, available from Marston Book Services (01235 465500)
Links: Summary
Date: 2002-Oct
A study in Scotland found that successful youth projects are often the result of young people themselves being involved in all stages of the project.
Source: Emily Bain, Social Inclusion in Rural Areas: Innovative Projects for Young People, Scottish Executive (0131 244 7560)
Links: Summary
Date: 2002-Oct
A report examined consumers' confusion about systems for their involvement and representation. Consumers were asked what they expect of representative organisations, and to suggest ways of developing better methods of representation.
Source: Visible, Accountable and Achieving? Views of Consumer Representation and Representative Organisations, National Consumer Council (020 7730 3469)
Links: Report (pdf)
Date: 2002-Sep
Guidelines were published for involving children and young people particularly those who have a chronic illness or physical disability in local decisions about health services development.
Source: Jane Lightfoot and Patricia Sloper, Having a Say in Health: Guidelines for involving young patients in health services development, Social Policy Research Unit/University of York (01904 433608)
Links: Guidelines (pdf) | Research summary (pdf)
Date: 2002-Sep
A booklet examined how local authorities can involve local people in decision-making, in the light of new legislation in Scotland requiring authorities to improve community planning and consultation processes.
Source: Graham Atherton and Stuart Hashagen with Gabriel Chanan, Charlie Garratt and Alison West, Involving Local People in Community Planning, Community Development Foundation (020 7226 5375)
Links: Summary
Date: 2002-Sep
A report argued that involving consumers in decision-making can benefit everyone, including policy makers and service providers.
Source: Involving Consumers: Everyone Benefits, National Consumer Council (020 7730 3469)
Links: Report (pdf)
Date: 2002-Sep
A new book argued that the future of the National Health Service depends on empowering patients to play a more active role in their own care and in policy development.
Source: Angela Coulter, The Autonomous Patient: Ending Paternalism in Medical Care, Nuffield Trust (020 7631 8450)
Links: Press release (Word file)
Date: 2002-Sep
A study concluded that, although good practice is emerging, the approach to consumer involvement in the National Health Service is not a strategic one, but instead consists of several ad-hoc initiatives.
Source: Involving Consumers in Healthcare - Case Study for the Involving Consumers Project, National Consumer Council (020 7730 3469)
Links: Report (pdf)
Date: 2002-Sep
A report identified challenges for improving consumer involvement in food policy-making; it argued that the Department of Health in particular needs to develop such strategies in respect of its nutrition and food-orientated public health role.
Source: Involving Consumers in Food Policy - Case Study for the Involving Consumers Project, National Consumer Council (020 7730 3469)
Links: Report (pdf)
See also: Journal of Social Policy Volume 31/3, Digest 123, paragraph 4.7
Date: 2002-Sep
Researchers evaluated how public service organisations in Scotland use customer feedback and consultation in planning services.
Source: R. Stevenson and P. Gibson, Customer and Citizen Focused Public Service Provision, Scottish Executive, TSO (0870 606 5566)
Links: Report (pdf)
Date: 2002-Jun
A study showed how users can play a more central role in service reviews, based on a project looking at direct payments to disabled people.
Sources: C. Evans and A. Carmichael, Users' Best Value: A Guide to User Involvement: Good Practice in Best Value Reviews, York Publishing Services for Joseph Rowntree Foundation, available from York Publishing Services Ltd (01904 431213)
Links: JRF Findings 592
See also: Journal of Social Policy Volume 31/1, Digest 121 (paragraph 10.2)
Date: 2002-May