Concepts of ‘personalization’ in personalized medicine: implications for economic evaluation

Appendix 1

Selection and final names & affiliations of workshop participants

Out of literature and internet searches of relevant publications, organizations and agencies persons with high expertise in the focus areas of the framework were selected to generate a list of potential experts. The list contained position, affiliation, expertise and biosketch of the experts who were assigned to one of the six working groups – among them the WG on methods for economic evaluation - for the international ONCOTYROL expert task force. Additionally delegates from the Society of Medical Decision Making and Health Technology Assessment international were invited to be part of the working groups in the framework development.

Overall, 134 persons received invitations to the Oncotyrol Task Force Workshop in Innsbruck whereupon 31 experts were able to participate. Out of 72 experts asked to attend the following two Oncotyrol Task Force Workshops, 11 took part in Oslo and 13 in Bilbao. Additionally 10 senior researchers from the ONCOTYROL team participated in the workshops (see list).

Appendix 1. List of Participants in the International Oncotyrol Expert Task Force Workshops

Name / Affiliation / Working Group
1 / Clifford, Tammy / Canadian Agency for Drugs and Technologies in Health (CADTH), Canada / Structures and Processes
2 / Pasternack, Iris / Finnish Office for HTA (FinOHTA), Finland / Structures and Processes
3 / Kernstock, Eva / Gesundheit Österreich, Austria / Structures and Processes
4 / Grainger, David / Eli Lilly, Australia / Structures and Processes
5 / Tajik, Parvin / Dept Clinical Epidemiology & Biostatistics
Academic Medical Center- University of Amsterdam
Netherlands / Study design issues (PICOS scheme)
6 / Steyerberg, Ewout / Department of Public Health, Erasmus MC, Netherlands / Study design issues (PICOS scheme)
7 / Ollendorf, Dan / Institute for Clinical and Economic Review (ICER), United States / Study design issues (PICOS scheme)
8 / Mader, Sarah / Medical University Innsbruck, Austria / Study design issues (PICOS scheme)
9 / No approval of publication available / Academic, United States / Study design issues (PICOS scheme)
10 / No approval of publication available / Clinical researcher, Austria / Study design issues (PICOS scheme)
11 / Klocker, Helmut / Medical University Innsbruck, Austria / Study design issues (PICOS scheme)
12 / Rochau, Ursula / UMIT – University for Health Sciences, Medical Informatics & Technology, Austria
Oncotyrol – Center for Personalized Cancer Medicine, Austria / Study design issues (PICOS scheme)
13 / Krahn, Murray / THETA (Toronto Health Economics and Technology Assessment Collaborative), Canada / Evaluation of Clinical Effectiveness
14 / Brixner, Diana / Outcomes Research Center, Dept. of Pharmacotherapy, University of Utah, United States / Evaluation of Clinical Effectiveness
15 / Thomas Trikalinos* / Department of Health Services, Policy & Practice, Brown University School of Public Health, Brown University, Providence, United States / Evaluation of Clinical Effectiveness
16 / No approval of publication available / Senior scientist at nonprofit research center, focusing on comparative effectiveness research, United States / Evaluation of Clinical Effectiveness
17 / Sampietro-Colom, Laura / Hospital Clinic Barcelona, Spain / Evaluation of Clinical Effectiveness
18 / Oberaigner, Willi / Institut für klin. Epidemiologie der TILAK – Unternehmen Gesundheit, Austria
Oncotyrol - Center for Personalized Cancer Medicine company partner, Austria
UMIT – University for Health Sciences, Medical Informatics & Technology, Austria / Evaluation of Clinical Effectiveness
19 / Saverno, Kim / UMIT – University for Health Sciences, Medical Informatics & Technology, Austria
Oncotyrol – Center for Personalized Cancer Medicine, Austria / Evaluation of Clinical Effectiveness
20 / Manca. Andrea / Centre for Health Economics, University of York, United Kingdom / Methods for Economic Evaluation
21 / Oguzhan, Alagoz / University of Wisconsin-Madison, College of Engineering, United States / Methods for Economic Evaluation
22 / Payne, Katherine / School of Medicine, Manchester Centre for Health Economics, The University of Manchester, United Kingdom / Methods for Economic Evaluation
23 / Rogowski, Wolf / IMG
Helmholtz Center Munich – Deutsches Forschungszentrum für Gesundheit und Umwelt, Germany / Methods for Economic Evaluation
24 / Van den Akkern, Elske / Leiden University Medical Center, Department of Medical Decision Making, Netherlands / Methods for Economic Evaluation
25 / Jahn, Beate / UMIT – University for Health Sciences, Medical Informatics & Technology, Austria
Oncotyrol – Center for Personalized Cancer Medicine, Austria / Methods for Economic Evaluation
26 / Sroczynski, Gaby / UMIT – University for Health Sciences, Medical Informatics & Technology, Austria
Oncotyrol – Center for Personalized Cancer Medicine, Austria / Methods for Economic Evaluation
27 / Stühlinger, Verena / UMIT – University for Health Sciences, Medical Informatics & Technology, Austria / Ethical, legal, social issues
28 / Flatscher-Thöni, Magdalena / UMIT – University for Health Sciences, Medical Informatics & Technology, Austria / Ethical, legal, social issues
29 / Mortensen, Gitte Lee / AnthroConsult, Denmark / Ethical, legal, social issues
30 / Schleidgen, Sebastian / Ludwig Maximilian University Munich, Germany / Ethical, legal, social issues
31 / No approval of publication available / Pharmaceutical Company, United Kingdom / Ethical, legal, social issues
32 / No approval of publication available / Health Policy Consultant, United Kingdom / Ethical, legal, social issues
33 / Garrison, Lou / Pharmaceutical Outcomes Research & Policy Program, Department of Pharmacy, University of Washington , United States / Link to Decision Making
34 / Endel, Gottfried / Association of Social Insurance Agencies, Austria / Link to Decision Making
35 / Faulkner, Eric / Institute for Pharmacogenomics and Individualized Therapy, University of North Carolina at Chapel Hill, United States / Link to Decision Making
36 / Stiggelbout, Anne / Leiden University Medical Center, Netherlands / Link to Decision Making
37 / No approval of publication available / Researcher, United Kingdom / Link to Decision Making
38 / Ward, Robyn / University of New South Wales, Australia / Link to Decision Making
39 / Meijer, Paulien / Merck & Co, Inc. Whitehouse Station, USA / Link to Decision Making
40 / Pugner, Klaus / Amgen (Europe) GmbH, Switzerland / Link to Decision Making
41 / Hebborn, Ansgar / Roche Pharma, Switzerland / Link to Decision Making
42 / Klemp, Marianne / Norwegian Knowledge Centre for the Health Services, Norway / Link to Decision Making
43 / No approval of publication available / Consulting company, United States / Link to Decision Making
44 / Schwarzer, Ruth / UMIT – University for Health Sciences, Medical Informatics & Technology, Austria
Oncotyrol – Center for Personalized Cancer Medicine, Austria / Link to Decision Making
45 / Siebert; Uwe / UMIT – University for Health Sciences, Medical Informatics & Technology, Austria
Oncotyrol – Center for Personalized Cancer Medicine, Austria / Contents and organization of Workshop in General
46 / Schnell-Inderst, Petra / UMIT – University for Health Sciences, Medical Informatics & Technology, Austria
Oncotyrol – Center for Personalized Cancer Medicine, Austria / Contents and organization of Workshop in General
47 / Husereau, Don / Canadian Agency for Drugs and Technologies in Health (CADTH), Canada. / Contents and organization of Workshop in General

*via telephone

Further details regarding the workshops

Each workshop included discussions among pre-defined groups of key experts as well as plenary sessions in which rapporteurs from each topic specific working group presented key findings to stimulate a collective discussion. The findings from these topic specific and collective plenary discussions were used to understand the degree and extent of consensus on the HTA methods and process for PM in oncology. The findings from the workshops were recorded using extensive notes taken from the summary power point slides prepared during the breakout session and a team of note takers who attended each plenary session. Thematic data analysis was used to analyze the notes recorded in each workshop and used to inform the degree of consensus and breadth of views on the economic evaluation of PM.

For each topic specific session a framework document with key research questions was prepared. This document was based on a review of the literature of HTA and PM. The literature search aimed to identify key recommendations, key principles and methods of HTA. The framework document for the working group “defining methods on economic evaluation” was based on one HTA guidance document dealing with economic evaluation in oncology (Mittmann N et al. Addendum to CADTH’s Guidelines for the Economic Evaluation of Health Technologies: Specific Guidance for Oncology Products. Ottawa: Canadian Agency for Drugs and Technologies in Health; 2009).

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