Stakeholder preferences in organ allocation – a conjoint measurement approach Thorsten Ahrend

1. Institute of Management in Medicine and Health Care Sciences, University of Bayreuth Stakeholder preferences in organ allocation – a conjoint measurement approach Thorsten Ahrend Boston, April, 25th Priorities 2010

2. AGENDA Public discourse on setting priorities in the German health care system Exploration of stakeholder preferences in organ allocation Measurement of preference orders in organ allocation with conjoint analysis

3. AGENDA Public discourse on setting priorities in the German health care system Exploration of stakeholder preferences in organ allocation Measurement of preference orders in organ allocation with conjoint analysis

4. Priorities in Health Care – the German discussion Current discussion Prof. Hoppe, President of the German Medical Association addressed the problem of hidden rationing and stressed the necessity of an open discussion on priorities in medical care. He requested the implementation of a Health Care Council of physicians, ethicians, lawyers, health care scientists, theologians, social scientists and patient representatives to develop recommendations to the politics for a just allocation of scarce resources. May 2009 The German Health Minister argued against a discussion on priorities in health care. For him prioritisation of health care is not a task of the German Federal Parliament and is also not in accordance with his ethical values as a physician. He rather strives for a health care system which works efficiently with the statutory insurance contributions. March 2010

5. Priorities in Health Care – the German discussion Members of the Central Association of the statutory health insurance system point out, the there is no legal basis for rationing of health care in Germany as an insured person has a legal title to all necessary in- and out-patient services. They question whether the offered health care services correspond to the medical necessity and assume behind the discussion on rationing and prioritization a competition for resources.

6. The research group FOR 655 - Focus Prioritizing in Medicine: A theoretical and empirical analysis in consideration of the public health insurance system www.for655.de • Funded by the German Research Foundation • Members: 11 working groups from 15 German universities and research institutions

7. The research group FOR 655 - Projects Theoretical projects Focus on legal, philosophical and economic aspects, frameworks and implications relating to the process of setting priorities in the statutory health insurance. Projects Empirical projects Analyse stakeholder preferences concerning prioritization in medicine from a horizontal and vertical point of view.

8. The research group FOR 655 – Project examples Project B3: “Stakeholder preferences and criteria in organ allocation - exemplified by heart, liver and renal transplantation” Project B5: Evidence based medicine (EbM) and health related quality of life (hrQoL) – potential criteria for prioritization exemplified by the peripheral arterial occlusive disease (PAD)

9. AGENDA Public discourse on setting priorities in the German health care system Exploration of stakeholder preferences in organ allocation Measurement of preference orders in organ allocation with conjoint analysis

10. Exploration of preferences – background (1/2) In Germany, the supply of donor organs does not meet the demand of waiting list patients. Due to this scarcity of resources, transplantation medicine is one of the few health care sectors in Germany, in which priority setting and rationing based on explicit allocation criteria has already been established.

11. Exploration of preferences – background (2/2) 1 However, these allocation criteria are challenged by several stakeholders and areas of research, e.g. ethics or theories of democracy. 2 Utilitarian criteria (e.g. mismatch grade and –probability) are questioned as they are contradictory to the principle of indifference of the worth of life. On the other hand, waiting time is seen as critical, since transplant life span reduces with prior waiting time. 3 The conducted study aimed at the exploration and ranking of preferred organ allocation criteria of those stakeholders who are personally or professionally involved, but also included unrelated individuals.

12. Exploration of preferences - methodology • So far there is no comprehensive previous knowledge about stakeholder preferences to potential prioritization criteria in Germany. • The study focused on the comprehension of individual stakeholder preferences and aimed at the analytical representativity of it’s research results, that means the exploration of a preferably heterogeneous set of prioritization criteria. • The heterogeneity of the sample refers to the study’s respondents who belong to different stakeholder groups (qualitative content analysis according to Mayring). • The ranking of the prioritization criteria is examined in a conjoint measurement study.

13. Respondents are stratified as follows: Exploration of preferences – stakeholder groups • Different specialisations • In and out-patient Physicians • Hospital-based or not • Length of work experience Nurses • Age • Severity of disease • Education Patients • Age • Severity of disease • education Relatives • Age • Education Uninvolved citizens

14. Exploration of preferences – study procedure • Qualitative approach with 41 semi-structured interviews • Interview duration between 40 - 80 minutes • Interviewees • 12 transplanted and waiting list patients (kidney, liver or heart transplantation) • 9 relatives or close friends • 9 citizens without significant insight into organ transplantation • 4 nurses from transplantation centres • 7 physicians with and without professional experience in organ transplantation • Interview transcription with f4-software • Qualitative content analysis • Interview coding with MAXQDA • Tests on objectivity, validity and reliability • Reliability tests: Intra- and inter-coder-reliability Study procedure

15. As the central result of the study a set of categories with three levels was derived. The medical level is related to the core elements of medical treatment. The individual patient level refers to individual characteristics of persons or patients. The societal level aims at certain high-level views on the structure and function of the organ allocation or healthcare system from a societal point of view. Exploration of preferences – results (1/3)

16. Exploration of preferences – results (2/3) 1 2 Patient Level Medical level • Age (children, younger people in general) • Personal responsibility (high therapy compliance, no self inflicted diseases) • Medical prognosis (high transplant survival rate in general, low co-morbidity, short cold ischaemia, high histocompatibility, inverse waiting time, age correspondence between donor and recipient) • Medical necessity (life-threatening situation, long waiting time) • Health-related quality of life (lowest baseline life quality, highest outcome life quality) • Patients’ state of health (low degree of (co-)morbidity) 3 Societal Level • Commitment to society (higher job-related productivity, responsibility for children, potential organ donors / club solution, posteriorisation of hardened criminals, high social status) • Utility maximisation (optimization of donor organ utilization) • Balancing histocompatibility-related allocation disadvantages (high mismatch probability) • One chance (preference for a first-time transplantation)

17. The medical level accounts for 81 codings (54,0%), the individual patient level for 49 mentions (32,7%). The fewest codings with 20 codings (13,3%) fell upon the societal level. The most frequently mentioned criteria were life-threatening situation, younger people in general, high transplant survival rate in general, high therapy compliance, long waiting time and low co-morbidity. Patients and their relatives mentioned above average often criteria of the individual patient level. Physicians stated disproportionately high frequently criteria at the medical level. Nurses argued less from a medical-professional perspective, but rather from a patient-related view. Uninvolved citizens contributed mainly criteria on the societal level. Exploration of preferences – results (3/3) Frequency analysis

18. AGENDA Public discourse on setting priorities in the German health care system Exploration of stakeholder preferences in organ allocation Measurement of preference orders in organ allocation with conjoint analysis

19. Measurement of preference order – procedure • The explored set of prioritization criteria in organ transplantation is the basis for a subsequent quantitative study. • The aim of the quantitative study is to explore a ranking of the prioritization criteria and to test for preference differences of stakeholder groups. • The qualitative study showed that the views of relatives were much in line with patient views, therefore they are not included as a separate stakeholder group. • The ranking of the prioritization criteria is examined by applying a conjoint analysis approach.

20. Traditional full-profile conjoint value analysis (CVA): alternatives which are composed of levels of all attributes are brought into a ranking or rating order. The number of attributes and attribute levels determines the amount of alternatives. Through partial (fractioned) designs the number of alternatives can be reduced. With more than 6 attributes the ranking or rating tasks become too complex for respondents. Choice Based Conjoint (CBC) analysis generates preference evaluations by discreet choice decisions among sets of objects. CBC is more realistic than traditional full-profile conjoint analysis, but also gets too complex with more than 6 attributes. Adaptive Conjoint Analysis (ACA) is a hybrid method which combines directly collected utility values of attributes with preference evaluations from pair-wise comparisons of profiles. In 2006 a meta analysis of 135 conjoint studies was conducted to evaluate the reliability and validity of different conjoint analysis methods. Measurement of preference order – methods (1/2) CONJOINT ANALYSIS - VARIANTS 1 2 3 4

21. Choice Based Conjoint (CBC) methods achieved the best results as well for individual predictions of preference evaluations as also on the level of aggregate choice shares. Adaptive Conjoint Analysis (ACA) results in better validity criteria than traditional CVA. In 2009 Sawtooth Software Inc. introduced Adaptive Choice Based Conjoint (ACBC), a software tool which combines the advantages of adaptive and choice based conjoint measurement methods. ACBC allows also for non-compensatory decision rules and is best used in instances where there are 5 or more attributes. Measurement of preference order – methods (2/2) CONJOINT ANALYSIS - VARIANTS 5 6 7 8

22. After a pre-test with students of health care science to evaluate the practicability of the study design a study with 240 respondents is planned. The matter of the study are the prioritization criteria and their attribute levels which where explored in the foregoing qualitative study. The study includes 60 participants each from the following stakeholder groups: Physicians Nurses Patients Health care managers Measurement of preference order – design

23. Legitimacy is a crucial issue in the discussions on stakeholder participation in decision processes in the health care system. The conjoint measurement study helps to reveal preference orders with regard to different prioritization criteria of certain stakeholder groups. The focus of the study so far is on vertical prioritising (organ transplantation) but shall be extended to more general horizontal prioritization criteria. The results of the study should be compared to other analyses of prioritization settings in order to derive at a widely accepted set of criteria for prioritising in the context of the German health care system. Outlook

24. Acknowledgements • Birgitta Bayerl, M.A., M.P.H. • Kathrin Alber, M.A. • Eckhard Nagel, M.D., Ph.D. • Walter A. Wohlgemuth, M.D., Ph.D. German Research Foundation Comments/Questions: Thorsten.Ahrend@kfh-dialyse.de

25. Institute of Management in Medicine and Health Care Sciences, University of Bayreuth Stakeholder preferences in organ allocation – a conjoint measurement approach Thorsten Ahrend Thank you for your attention!