Investigating Choice Experiments for Preferences of Older People (ICEPOP)

Lead Research Organisation: MRC Health Services Resrch Collaboration

Abstract

This programme aims to provide numerical estimates of peoples preferences for a variety of issues that are important in making policy decisions about care for older people. These issues include quality of life, care at the end of life, the funding of long term care, the use of informal carers, rationing and some work on specific conditions including prostate cancer. ||The methodological work of the programme is about making sure that these numerical estimates are based on peoples own views about what is important to them (rather than the views of experts) and that the numerical estimates obtained are accurate representations of peoples views.

Technical Summary

Across the world, the proportions of older people and the very old, (aged 85 and over), in the population are rising. These very old, particularly, are likely to have greater health problems and to receive more health and social services. Resource allocation decisions in the UK are focused on the use of the quality-adjusted life-year (QALY) at national level (and are still largely historically based at local level), but QALYs are problematic for making resource allocation decisions about care for older people because they are entirely health focused (where older people often require a combination of health and social care), they are concerned only with quality of life (where quality of death and dying may also be important); and they are unable to inform organisational issues (including provision of long-term care and informal care). Stated Preference Discrete Choice Modelling potentially offers a means of providing information about preferences with respect to these wider issues.||The focus of this programme is twofold - comprising a topic focus on decisions about care for older people and a methodological focus on the use of Stated Preference Discrete Choice Modelling (SPDCM). The two aspects of the programme move forward in tandem, with individual studies informing SPDCM methodology for future studies, and the particular SPDCM experiments providing information for policy decisions about care for older people. ||Specific topics included within the programme are: developing utility values for quality of life measurement, advancing the area by use of Sens capability theory; estimating preferences for informal care; determining preferences for death, dying and end of life care; assessing choices for funding of long-term care; estimating preferences for priority setting for care for older people; and work around conditions affecting older people including prostate cancer.||The innovative methodological focus of this programme is the use and development of best-worst scaling as a means of discrete choice modelling. Work is focused on a number of areas: study design and analysis using best-worst scaling; the development of attributes using rigorous methods (including in-depth interviews, meta-ethnography); optimising response (by a series of nested RCTs); determining appropriate sample sizes (using simulations to develop guidance); individual level preferences (combining complex statistical techniques and qualitative work); ordering effects (using nested RCTs); and data synthesis issues (using simulation and think aloud techniques to determine whether information from best-worst scaling can be combined with traditional SPDCM techniques).

Publications

10 25 50
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Al-Janabi H (2011) Estimation of a preference-based carer experience scale. in Medical decision making : an international journal of the Society for Medical Decision Making

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Coast J (2008) Valuing the ICECAP capability index for older people. in Social science & medicine (1982)

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Coast J (2006) Maximising responses to discrete choice experiments: a randomised trial. in Applied health economics and health policy

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Coast J (2008) An assessment of the construct validity of the descriptive system for the ICECAP capability measure for older people. in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation

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Coast J (2007) Developing attributes and levels for discrete choice experiments using qualitative methods. in Journal of health services research & policy

 
Description CVZ workshop - Netherlands
Geographic Reach National 
Policy Influence Type Participation in advisory committee
 
Description ICECAP recommended by NICE
Geographic Reach National 
Policy Influence Type Citation in other policy documents
 
Description ICECAP recommended for use in long term care by ZorgInstituut Nederland
Geographic Reach Europe 
Policy Influence Type Citation in other policy documents
URL https://www.ispor.org/PEguidelines/source/NL-Economic_Evaluation_Guidelines.pdf
 
Description NICE citizen's council - ICECAP for social services
Geographic Reach National 
Policy Influence Type Participation in a national consultation
 
Description NICE perspective focus group
Geographic Reach National 
Policy Influence Type Participation in a national consultation
 
Description NICE public health workshop
Geographic Reach National 
Policy Influence Type Participation in a national consultation
 
Description NICE public health workshop 2012
Geographic Reach National 
Policy Influence Type Participation in a national consultation
 
Description NICE social value judgements workshop
Geographic Reach National 
Policy Influence Type Participation in a national consultation
 
Description NICE utility workshop
Geographic Reach National 
Policy Influence Type Participation in a national consultation
 
Description SCIE guidance on economic evaluation in social care
Geographic Reach National 
Policy Influence Type Citation in other policy documents
 
Description ERC Starting Grant
Amount £1,000,000 (GBP)
Funding ID 261098 - EconEndLife 
Organisation European Research Council (ERC) 
Sector Public
Country European Union (EU)
Start 04/2011 
End 03/2015
 
Description Investigator Award in Humanities & Social Sciences
Amount £930,709 (GBP)
Funding ID 205384/Z/16/Z 
Organisation Wellcome Trust 
Sector Charity/Non Profit
Country United Kingdom
Start 02/2018 
End 01/2023
 
Description MRC Early Career Research Fellowship in the Economics of Health
Amount £276,684 (GBP)
Funding ID G1002334 
Organisation Medical Research Council (MRC) 
Sector Academic/University
Country United Kingdom
Start 06/2011 
End 05/2014
 
Description MRC Project Grant
Amount £410,000 (GBP)
Funding ID G0701027 
Organisation Medical Research Council (MRC) 
Sector Academic/University
Country United Kingdom
Start 10/2009 
End 03/2011
 
Description MRC trials hub for methodology research
Amount £14,600 (GBP)
Organisation Medical Research Council (MRC) 
Sector Academic/University
Country United Kingdom
Start 10/2010 
End 06/2011
 
Description NHMRC Project grant
Amount £822,660 (GBP)
Funding ID 1006334 
Organisation National Health and Medical Research Council 
Sector Public
Country Australia
Start 04/2011 
End 03/2014
 
Title CES 
Description A Carer Experience Scale containing preference based values, for use in economic evaluation. 
Type Of Material Physiological assessment or outcome measure 
Year Produced 2009 
Provided To Others? Yes  
Impact see www.birmingham.ac.uk/icecap. This measure is freely available for research use. It is currently being used in 5 studies in the UK and Australia. These are studies where the impact of the intervention on carers is particularly important and include studies of increased mobility, rehabilitation, risk perception and transition care. 
URL http://www.birmingham.ac.uk/icecap
 
Title ICECAP-O 
Description An index of capability for use with older people. This is a measure for use in economic evaluation, particularly where relevant outcomes go beyond health. 
Type Of Material Physiological assessment or outcome measure 
Year Produced 2008 
Provided To Others? Yes  
Impact See www.birmingham.ac.uk/icecap. The measure is freely available for use in research; researchers are asked to register their use of the measure. Since publication of the measure in 2008, the measure is being used in more than 30 studies in the UK, USA, Australia, Canada and the Netherlands (for the latter, a Dutch translation of the measure has been developed). Topics of studies include: nursing home care, joint replacement, IPF, telecare, drug addition, seniors exercise programme, chronic pain. 
URL http://www.birmingham.ac.uk/icecap
 
Title ICECAP-SCM 
Description A capability measure for use in economic evaluation of interventions at the end of life. A descriptive system has been developed and values are currently under development. 
Type Of Material Physiological assessment or outcome measure 
Year Produced 2014 
Provided To Others? Yes  
Impact Measure being used in at least one other study 
URL http://www.birmingham.ac.uk/icecap
 
Description BWS collaboration 
Organisation Newcastle University
Department Institute of Health and Society
Country United Kingdom 
Sector Academic/University 
PI Contribution Contribution to papers
Collaborator Contribution Contribution to papersContribution to papers
Impact 17257725, 19017376, 18945358, 17257725, 18572295, 17249841, 20382460
 
Description BWS collaboration 
Organisation University of Technology Sydney
Country Australia 
Sector Academic/University 
PI Contribution Contribution to papers
Collaborator Contribution Contribution to papersContribution to papers
Impact 17257725, 19017376, 18945358, 17257725, 18572295, 17249841, 20382460
 
Description capability collaboration 
Organisation London School of Hygiene and Tropical Medicine (LSHTM)
Department Faculty of Public Health and Policy
Country United Kingdom 
Sector Academic/University 
PI Contribution contribution to papers
Collaborator Contribution contributions to paperscontribution to papers
Impact 18457341, 18657346, 20724670
Start Year 2007
 
Description capability collaboration 
Organisation University of Glasgow
Department School of Social and Political Sciences Glasgow
Country United Kingdom 
Sector Academic/University 
PI Contribution contribution to papers
Collaborator Contribution contributions to paperscontribution to papers
Impact 18457341, 18657346, 20724670
Start Year 2007
 
Description dermatology collaboration 
Organisation United Bristol Healthcare NHS Trust
Country United Kingdom 
Sector Public 
PI Contribution joint publications
Collaborator Contribution Access to research participants: joint publicationsAccess to research participants; joint publications
Impact 19017376, 17244394, 16882179
 
Description dermatology collaboration 
Organisation University of Bristol
Department School of Social and Community Medicine
Country United Kingdom 
Sector Academic/University 
PI Contribution joint publications
Collaborator Contribution Access to research participants: joint publicationsAccess to research participants; joint publications
Impact 19017376, 17244394, 16882179
 
Title CES Carer Experience Scale 
Description CES Carer Experience Scale for measurement of carer impact in economic evaluation 
IP Reference  
Protection Copyrighted (e.g. software)
Year Protection Granted 2008
Licensed No
Impact Use of the measure in other studies (see impact)
 
Title ICECAP-O Capability Index for Older People 
Description Tool for assessing capability in older people 
IP Reference  
Protection Copyrighted (e.g. software)
Year Protection Granted 2006
Licensed No
Impact Use of the measure by others (see influence on policy)
 
Title ICECAP-SCM 
Description An outcome measure for use in economic evaluation of end of life care 
IP Reference  
Protection Copyrighted (e.g. software)
Year Protection Granted 2014
Licensed No
Impact see impact
 
Description @ICECAPm twitter account 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Twitter account focused on the ICECAP measures started late 2013.

January 2016: currently has 209 followers and has tweeted 224 times.
Year(s) Of Engagement Activity 2013,2014,2015,2016,2017
URL https://twitter.com/icecapm
 
Description CES-Bristol 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact Launch event for the Carer Break Service. Talking abotu CES and how it might be used in evaluation.

Using the CES in evaluation of carer breaks
Year(s) Of Engagement Activity 2009
 
Description CES-DoH 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact Seminar to DoH analysts and policy makers on the Carer Experience Scale

Not as yet
Year(s) Of Engagement Activity 2007
 
Description CES-report 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Participants in your research and patient groups
Results and Impact summary report on the development and use of the CES, sent to all research participants in interviews and valuation survey who wanted to receive a copy. Also sent to Princess Royal Trust for Carers and five local carer centres.

none
Year(s) Of Engagement Activity 2008
 
Description Sydney Morning Herald 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact Contributed towards newspaper article about quality of life in the Sydney Morning Herald

Unknown
Year(s) Of Engagement Activity 2008
 
Description public lecture 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? Yes
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact public lecture presented by Dr Flynn, with the title: A quality life. Can understanding society's concerns ensure our future wellbeing? Sydney. May 2010.



n/a
Year(s) Of Engagement Activity 2010
URL http://www.uts.edu.au/new/speaks/2010/May/2505.html
 
Description science festival 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? Yes
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact Talk presentd by Dr Flynn on The 'science' of happiness. Is there an equation for quality of life? to the Ultimo Science Festival, Sydney. August 2010



n/a
Year(s) Of Engagement Activity 2010