Is "end-of-life" care more valuable? Measuring societal views using the new Q2S method
Lead Research Organisation:
Glasgow Caledonian University
Department Name: The YUNUS Centre
Abstract
Public sector resource allocation is an important area for research, especially now, when spending cuts are inevitable. In the health sector this frequently attracts media attention, especially with respect to the recommendations of the National Institute for Health and Clinical Excellence (NICE) and the denial of drugs to patients. However decisions to provide one treatment from a limited pot of resources will always mean that something else cannot be funded.
Effective policies should incorporate the opinions of the general public and so policy makers need information about the views held by people in society. Firstly, information is needed about the nature of public opinion. What values and arguments exist around the topic in question? Usually there are a number of opinions about a particular issue and these can be described in terms of the features that set them apart as well as issues of consensus. Secondly, information is needed on how those views are distributed in a population - is there a dominant view? and what kinds of people subscribe to different opinions? This is often important for decision makers but requires a different kind of data based on larger samples of people. Research methods exist which can provide information of both types, using different approaches. In this project, we develop methods using an approach called Q methodology, which can link these two types of information within a consistent methodological approach.
The issue we address here is the value to society of ?end-of-life? technologies. Decisions about the denial of expensive drugs for terminally ill patients, which extend life by only a short time, are controversial. We will explore the views of the general public regarding the provision of end-of-life technologies which will inform NICE and local organisations who make decisions about resources in health care.
Our research will be conducted in two phases: the first will involve 250 people sampled from the general population and 50 from specific interest groups. They will sort cards, printed with statements of opinion, onto a grid, according to agreement. Based on an analysis of common patterns between respondents? sorts we will identify and describe shared views. In a second phase we will use these findings to design a survey which will allow us to analyse how common these views are in a large, representative sample of the population.
Effective policies should incorporate the opinions of the general public and so policy makers need information about the views held by people in society. Firstly, information is needed about the nature of public opinion. What values and arguments exist around the topic in question? Usually there are a number of opinions about a particular issue and these can be described in terms of the features that set them apart as well as issues of consensus. Secondly, information is needed on how those views are distributed in a population - is there a dominant view? and what kinds of people subscribe to different opinions? This is often important for decision makers but requires a different kind of data based on larger samples of people. Research methods exist which can provide information of both types, using different approaches. In this project, we develop methods using an approach called Q methodology, which can link these two types of information within a consistent methodological approach.
The issue we address here is the value to society of ?end-of-life? technologies. Decisions about the denial of expensive drugs for terminally ill patients, which extend life by only a short time, are controversial. We will explore the views of the general public regarding the provision of end-of-life technologies which will inform NICE and local organisations who make decisions about resources in health care.
Our research will be conducted in two phases: the first will involve 250 people sampled from the general population and 50 from specific interest groups. They will sort cards, printed with statements of opinion, onto a grid, according to agreement. Based on an analysis of common patterns between respondents? sorts we will identify and describe shared views. In a second phase we will use these findings to design a survey which will allow us to analyse how common these views are in a large, representative sample of the population.
Technical Summary
In 2009, the National Institute for Health and Clinical Excellence (NICE) issued supplementary guidance to their technology appraisal methods to be applied to end-of-life (EoL) technologies. As a result, higher cost effectiveness thresholds (beyond the standard #30,000 per quality adjusted life year gained) can be applied to EoL technologies if certain criteria are met, although how high is not stated. The criteria include patients with relatively rare conditions for whom life expectancy is less than 2 years and treatment will extend life by at least 3 months. In practice, and in terms of the therapies appraised by NICE and other similar organisations (e.g. the Scottish Medicines Consortium), these conditions tend to apply to drugs for rarer types of cancer. Denial of such drugs has often been highly controversial, has led to negative news headlines and patient campaigns, and, in part, has led to the introduction of a new ?Cancer Drug Fund?.
However, little is known about the societal views on this subject, especially regarding the priority that might be afforded EoL technologies relative to all other NHS treatments. Rigorous research is required to aid decision-makers in delineating, describing and measuring such societal views. Such research requires methods capable of addressing qualitative questions, ?What is the nature of societal views around the relative value of EoL therapies??, as well as quantitative questions, ?How are such views distributed in the population??. Existing approaches keep qualitative and quantitative methods, associated with distinct and different paradigms, separate, even when applied in the same project.
In this project we will develop a single, integrated framework for both: first, using Q methodology to elicit and describe the views that exist; then devising quantitative Q methods to extend these findings into rigorous survey design and analysis. This is the ?Q sort to survey? (Q2S) approach. Using data from previous, exploratory work to pilot different analytic techniques and different questionnaire designs we will establish the most effective Q2S approach, which will then be applied to the exploration of societal views regarding EoL issues and their distribution in society. This will be done via a ?traditional? Q methodology study, the results of which will form the basis of a more?parsimonious, nationally-representative survey. Analysis of the survey data will require testing of different statistical methods.
Once established, these methods can be generalised to any study of societal perspectives.
However, little is known about the societal views on this subject, especially regarding the priority that might be afforded EoL technologies relative to all other NHS treatments. Rigorous research is required to aid decision-makers in delineating, describing and measuring such societal views. Such research requires methods capable of addressing qualitative questions, ?What is the nature of societal views around the relative value of EoL therapies??, as well as quantitative questions, ?How are such views distributed in the population??. Existing approaches keep qualitative and quantitative methods, associated with distinct and different paradigms, separate, even when applied in the same project.
In this project we will develop a single, integrated framework for both: first, using Q methodology to elicit and describe the views that exist; then devising quantitative Q methods to extend these findings into rigorous survey design and analysis. This is the ?Q sort to survey? (Q2S) approach. Using data from previous, exploratory work to pilot different analytic techniques and different questionnaire designs we will establish the most effective Q2S approach, which will then be applied to the exploration of societal views regarding EoL issues and their distribution in society. This will be done via a ?traditional? Q methodology study, the results of which will form the basis of a more?parsimonious, nationally-representative survey. Analysis of the survey data will require testing of different statistical methods.
Once established, these methods can be generalised to any study of societal perspectives.