My presentation yesterday at the Centre for Applied Disability Research conference seemed to go down well. There was one comment that I get on a frequent basis so I thought I’d give a more complete answer here. The question is always a variant on the following:
“Why should we use ICECAP-O or one of those instruments you’re touting when there’s the WHOQoL instrument or instrument x/y/z that has been validated already?”
A tag-on is often to the effect “how can your 5 item instrument beat our 10/15/50 item instrument which is bound to be better for individuals?”
Well the answer is simple – it comes down to a difference in paradigm, in particular the difference between psychometrics and random utility theory. I could be rude at conferences (but don’t) to counter the (occasionally a tad aggressive) attacks I get on ICECAP-O for “not being individual-specific”. My “slightly aggressive” response would be “actually it’s YOUR instrument that isn’t individual specific – psychometrics isn’t about the individual, it uses differences BETWEEN individuals to validate the response categories. Random Utility Theory (RUT) is EXPLICITLY a theory of how the individual makes choices and as such, any instrument based on it is by definition an individual level QoL instrument! For ICECAP-O (or any of the other instruments in the ICECAP family or the CES) I could, in theory, give any respondent THEIR OWN set of scores (a “tariff” to use health economics parlance), if they do the choice experiment. You CANNOT do that with existing instruments, with the exception of some health-based ones that use the time trade-off/standard gamble, IF they’d asked the right set of questions to concentrate on individual level scores.
This individual respondent tariff reflects the trade-offs THAT INDIVIDUAL would make between the items and how bad the various impairments are to that person. You can’t get that from any of these instruments I hear touted as being “superior” since they were validated on the basis of between person differences – by definition they cannot be tested/validated at the individual level. (Not least because there are no scores at that level, certainly not preference based ones that reflect how bad the impairments all are on a common scale).
So ICECAP-O and the other instruments beat them all when it comes to the issue of “the individual level”. We can feed back individual level scores – and indeed we did, for the end-of-life care survey, which you too can do if you click on surveys and go back a page or two. So not only are there 4 to the power 5 (1024) distinct utility values available – it is the PROFILE defined by the set of 5 answers that matters, not the number of questions – but these 1024 scores could be individual specific if we wanted. Indeed Chapter 12 of the forthcoming best-worst scaling (BWS) book (Louviere, Flynn & Marley – Best-Worst Scaling: Theory & Applications, CUP) will present subgroup Australian tariffs for ICECAP-O.
“Testing” ICECAP-O using psychometric based techniques may be invalid – I’m not sure – but one thing I am sure of. Stop throwing mud at us for having an instrument that is “obviously worse” than these existing large-item questionnaires – because I KNOW for a fact you’ve not tested the individual level properties of the scoring of these. At best we can all agree a truce and say there are two differing paradigms in use here and at present there’s been no properly designed study that uses a common denominator on which I could compare them.
I’ve commented on a piece in the Guardian about the integration of health and social care in the UK and the options for individuals to have personal budgets.
I mentioned both the OSCA and ICECAP instruments – I wonder if all the millions of pounds of public money that went into developing these will actually come to fruition?
I hope those stupid happiness scores are not used – they’ve been debunked several times in several countries now, but certain arms of the British establishment seems dead set on them.
Aussies take note – there is a conference I am speaking at on this very subject in Sydney in late May.
Last day at UTS! Please note that from Monday I will be an employee of the University of South Australia (UNISA). My email is up and running (see posting elsewhere) and I have an office etc – working in North Sydney will be fantastic and I nosed around the office yesterday. It’s gorgeous – the operations team and some of the directors are already in place.
Also, if you use twitter you might like to follow the official ICECAP measure profile or @ICECAPm – it already has news of the next user group meeting at which I will be presenting.
For newbies, the ICECAP instruments use Sen’s Capabilities Approach as a framework for measuring and valuing well-being in a way that isn’t limited to “just” health. Thus, they are good alternatives to existing well-being instruments. The valuation is/has been done using the methods of another winner of the Nobel prize in Economics – Dan McFadden – discrete choice modelling. In particular the best-worst scaling variety in which I have led development in health and am a recognised global expert. BWS is now taking the world by storm and the book – to be published by CUP – will be finished in the next few weeks.
Tony Marley will arrive in Sydney this weekend. He, jordan and I will finalise the BWS book for CUP during the two weeks Tony is here – sweet!
There will be empirical chapter(s) on using the best-minus-worst scores ( the ‘scores’) in analysis together with a chapter publishing the complete set of Australian socio-demographic related tariffs for ICECAP-O and (if collaborators permit it) the Canadian population tariff for the same instrument.
Gave my talk and think (hope!) it was received well.
Will see if we get some more completes for the anonymous end-of-life care preferences and attitudes survey that I first mention here.
For anyone wanting to use the ICECAP-A Capability instrument to measure and value well-being in the UK, we have the early view paper in Health Economics with scoring!
SCORING THE ICECAP-A CAPABILITY INSTRUMENT. ESTIMATION OF A UK GENERAL POPULATION TARIFF
Terry N. Flynn, Elisabeth Huynh, Tim J. Peters, Hareth Al-Janabi, Sam Clemens, Alison Moody, Joanna Coast,
It is the first to produce both the population tariff and proper adjustment for scale (variance) heterogeneity in the same paper (rather than doing the latter as a secondary analysis). It also shows that Brits are not all alike, there are different “types” who value different attributes of life.
Today I’ve been smoothing the waters to try to get another (and highly influential) partner involved in a partnership grant proposal for NHMRC. I’m hoping that this time round the various discussions on IP, potential commercialisation etc will be wrapped up long before the proposal is due in so we can have plenty of time to sharpen it up.
It will do several things, but one of which is build on the end-of-life care survey we built from the original pilot study. Delays have largely been due to work stuff I can’t go into, and personal stuff. With luck things will be smoother sailing from here on in.
I was googling myself – as you do, and in this case to check that the youtube video with the two-naked-guys-plus-dildo thumbnail had been taken down/edited…it hadn’t – and found that my public lecture was blogged about back in 2010!
Thanks Lyrian! Hopefully I’ll get enough data from the recent survey to update the results.
PS neither of the guys in the video thumbnail is me and the video has nothing to do with me….honest! :-p
Advanced care planning is important so your relatives, friends and doctors know what treatment you’d want if you’re unable to make your wishes known.
Yet most people don’t make out an advanced care plan (ACP).
We’re developing tools to help facilitate this and we have a tool to elicit your attitudes and, more importantly, feed them back to you in a way that may help you understand your overall views on care and how you compare to the general older population of Australians.
The survey is here – give it a go.
Would you like to know you own personal quality of life score using the ICECAP-O instrument?
Would you like to know how you compare with other people your age? Gender? With others in your State or Territory (Australia)?
Try this totally anonymous survey – it’s in beta mode at the moment as we’re building up the numbers of responses to get better comparisons. However, it shows what we can do with ICECAP-O.