Patient Preferences in benefit risk assessments during the drug life cycle - Sofia ref.: 115966

Project Information

PREFER

Grant agreement ID: 115966

DOI

10.3030/115966

Project closed

EC signature date 21 October 2016

Start date 1 October 2016

End date 31 May 2022

Funded under

• SOCIETAL CHALLENGES - Health, demographic change and well-being

Total cost

€ 12 015 547,51

EU contribution

€ 6 000 000,00

Coordinated by

UPPSALA UNIVERSITET
Sweden

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Links to deliverables and publications from FP7 projects, as well as links to some specific result types such as dataset and software, are dynamically retrieved from OpenAIRE .

Deliverables

Documents, reports (25)

Report describing existing processes, conditions, and contextual factors that influence the utility and role of patientpreference studies and the rationale behind such influence

Migration

Report of case study lung cancer

Migration

Report characterising the desires, expectations concerns, and requirements of stakeholders about methodologies for patient-preference elicitation

Migration

Initial data management plan

Migration

Final report on operational requirements for the conduct of case studies

Migration

Report describing the candidate methodologies and assessment criteria to go forward for testing in empirical case studies and simulation studies

Migration

Defining Key Performance Indicators (KPIs)

Migration

Final data management plan

Migration

Summary report on training materials

Migration

Dissemination and communication plan

Migration

Report of case study NMD

Migration

Report assessing the extent to which results of case studies can be translated to other disease areas

Migration

Reports of additional case studies

Migration

Final recommendations

Migration

Sustainability plan

Migration

Report describing existing qualitative and quantitative methods for measuring patient benefit-risk preferences in medical treatment

Migration

Final scope document for recommendations

Migration

Report describing the requirements for patient-preference elicitation case studies to inform benefit-risk decision making for industry, Regulatory Authorities, HTA bodies, and reimbursement agencies at different decision points

Migration

Reports assessing the outcomes of the case studies versus criteria from WP 2

Migration

Report of case study RA

Migration

Report describing and assessing the historical case studies from industry

Migration

Report characterising the decision points throughout the medicinal product life cycle, the activities that are carried out in each step, and the types of assessments made at these points, as well as the assessment criteria used by different stakeholders

Migration

Report characterising the types and possible role of psychological instruments and educational tools in measuring patient preferences

Migration

Operational guide on best practice for conduct of patient preference studies

Migration

Report characterising the criteria to be used to assess the performance of patient-preference methods, the performance of the methods on these criteria, and a gap analysis

Migration

Websites, patent fillings, videos etc. (4)

Final event

Migration

Website launch

Migration

Open workshop on preference elicitation

Migration

Workshop on preliminary results

Migration

Publications

Peer reviewed articles (31)

An overview of critical decision-points in the medical product lifecycle: Where to include patient preference information in the decision-making process?

Author(s): Chiara Whichello, Karin Schölin Bywall, Jonathan Mauer, Stephen Watt, Irina Cleemput, Cathy Anne Pinto, Eline van Overbeeke, Isabelle Huys, Esther W. de Bekker-Grob, Richard Hermann, Jorien Veldwijk
Published in: Health Policy, 2020, ISSN 0168-8510
Publisher: Elsevier BV
DOI: 10.1016/j.healthpol.2020.07.007

Case 2 best-worst scaling: For good or for bad but not for both

Author(s): V.Soekhai, B.Donkers, B.Levitan, E.W.de Bekker-Grob
Published in: Journal of Choice Modelling, 2020, ISSN 1755-5345
Publisher: Elsevier BV
DOI: 10.1016/j.jocm.2021.100325

Patient perspectives regarding gene therapy in haemophilia: Interviews from the PAVING study

Author(s): Eline Overbeeke, Sissel Michelsen, Brett Hauber, Kathelijne Peerlinck, Cedric Hermans, Catherine Lambert, Michel Goldman, Steven Simoens, Isabelle Huys
Published in: Haemophilia, 2020, ISSN 1351-8216
Publisher: Blackwell Publishing Inc.
DOI: 10.1111/hae.14190

A study protocol for quantifying patient preferences in neuromuscular disorders: a case study of the IMI PREFER Project.

Author(s): Aura Cecilia Jimenez-Moreno, Cathy Anne Pinto, Bennett Levitan, Chiara Whichello, Christine Dyer, Eline Van Overbeeke, Esther de Bekker-Grob, Ian Smith, Isabelle Huys, Jennifer Viberg Johansson, Kate Adcock, Kristin Bullock, Vikas Soekhai, Zhong Yuan, Hanns Lochmuller, Ardine de Wit, Grainne S Gorman
Published in: Wellcome Open Research, 2020, ISSN 2398-502X
Publisher: Wellcome Trust
DOI: 10.12688/wellcomeopenres.16116.1

Key Determinants of Health-Related Quality of Life Among Advanced Lung Cancer Patients: A Qualitative Study in Belgium and Italy

Author(s): Rosanne Janssens, Reinhard Arnou, Elise Schoefs, Serena Petrocchi, Clizia Cincidda, Giulia Ongaro, Serena Oliveri, Meredith Y Smith, Evelyne Louis, Marie Vandevelde, Kristiaan Nackaerts, Gabriella Pravettoni, Isabelle Huys
Published in: Frontiers in pharmacology, 2021, ISSN 1663-9812
Publisher: Frontiers Media S.A.
DOI: 10.3389/fphar.2021.710518

Patient Preferences to Assess Value IN Gene Therapies: Protocol Development for the PAVING Study in Hemophilia

Author(s): Eline van Overbeeke, Brett Hauber, Sissel Michelsen, Michel Goldman, Steven Simoens, Isabelle Huys
Published in: Frontiers in medicine, 2021, ISSN 2296-858X
Publisher: Frontiers Media
DOI: 10.3389/fmed.2021.595797

Systematic review of quantitative preference studies of treatments for rheumatoid arthritis among patients and at-risk populations

Author(s): Gwenda Simons, Joshua Caplan, Rachael L DiSantostefano, Jorien Veldwijk, Matthias Englbrecht, Karin Schölin Bywall, Ulrik Kihlbom, Karim Raza, Marie Falahee
Published in: Arthritis research & therapy, 2022, ISSN 1478-6354
Publisher: BioMed Central
DOI: 10.1186/s13075-021-02707-4

Methodological Priorities for Patient Preferences Research: Stakeholder Input to the PREFER Public–Private Project

Author(s): Ian P Smith, Rachael L DiSantostefano, Esther W de Bekker-Grob, Bennett Levitan, Conny Berlin, Jorien Veldwijk, G Ardine de Wit
Published in: The patient, 2021, ISSN 1178-1653
Publisher: Adis International Ltd.
DOI: 10.1007/s40271-021-00502-6

Taking into Account Patient Preferences: A Consensus Study on the Assessment of Psychological Dimensions Within Patient Preference Studies

Author(s): Dario Monzani, Serena Petrocchi, Serena Oliveri, Jorien Veldwijk, Rosanne Janssens, Luca Bailo, Meredith Y Smith, Ian Smith, Elise Schoefs, Kristiaan Nackaerts, Marie Vandevelde, Evelyne Louis, Herbert Decaluwé, Paul De Leyn, Hanne Declerck, Eva G Katz, Francesco Petrella, Monica Casiraghi, Ilaria Durosini, Giulia Galli, Marina Chiara Garassino, G Ardine de Wit, Gabriella Pravettoni, Isabelle Huy
Published in: Frontiers in medicine, 2021, ISSN 2296-858X
Publisher: Frontiers Media
DOI: 10.2147/ppa.s261615

Patient Preferences in Rare Diseases: A Qualitative Study in Neuromuscular Disorders to Inform a Quantitative Preference Study

Author(s): A. Cecilia Jimenez-Moreno, Eline van Overbeeke, Cathy Anne Pinto, Ian Smith, Jenny Sharpe, James Ormrod, Chiara Whichello, Esther W. de Bekker-Grob, Kristin Bullok, Bennett Levitan, Isabelle Huys, G. Ardine de Wit, Grainne Gorman
Published in: The Patient - Patient-Centered Outcomes Research, 2021, ISSN 1178-1653
Publisher: Adis International Ltd.
DOI: 10.1007/s40271-020-00482-z

Does being exposed to an educational tool influence patient preferences? The influence of an educational tool on patient preferences assessed by a discrete choice experiment.

Author(s): Karin Schölin Bywall, Jorien Veldwijk, Mats G. Hansson, Eva Baecklund, Karim Raza, Marie Falahee, Ulrik Kihlbom
Published in: Patient Education and Counseling, 2021, ISSN 0738-3991
Publisher: Elsevier BV
DOI: 10.1016/j.pec.2021.03.013

Patient Centricity in Patient Preference Studies: The Patient Perspective

Author(s): Eline van Overbeeke, Inès Vanbinst, Aura Cecilia Jimenez-Moreno, Isabelle Huys
Published in: Frontiers in Medicine, Issue 7, 2020, ISSN 2296-858X
Publisher: Frontiers in Medicine
DOI: 10.3389/fmed.2020.00093

Patient Preferences for Multiple Myeloma Treatments: A Multinational Qualitative Study

Author(s): Rosanne Janssens, Tamika Lang, Ana Vallejo, Jayne Galinsky, Ananda Plate, Kate Morgan, Elena Cabezudo, Raija Silvennoinen, Daniel Coriu, Sorina Badelita, Ruxandra Irimia, Minna Anttonen, Riikka-Leena Manninen, Elise Schoefs, Martina Vandebroek, Anneleen Vanhellemont, Michel Delforge, Hilde Stevens, Steven Simoens, Isabelle Huys
Published in: Frontiers in medicine, 2021, ISSN 2296-858X
Publisher: Frontiers Media
DOI: 10.3389/fmed.2021.686165

Patient Preferences for Lung Cancer Treatment: A Qualitative Study Protocol Among Advanced Lung Cancer Patients

Author(s): Ilaria Durosini, Rosanne Janssens, Reinhard Arnou, Jorien Veldwijk, Meredith Y. Smith, Dario Monzani, Ian Smith, Giulia Galli, Marina Garassino, Eva G. Katz, Luca Bailo, Evelyne Louis, Marie Vandevelde, Kristiaan Nackaerts, G. Ardine de Wit, Gabriella Pravettoni, Isabelle Huys
Published in: Frontiers in Public Health, 2021, ISSN 2296-2565
Publisher: Frontiers Editorial Office
DOI: 10.3389/fpubh.2021.622154

Use of Patient Preferences in Health Technology Assessment: Perspectives of Canadian, Belgian and German HTA Representatives

Author(s): Eline van Overbeeke, Valérie Forrester, Steven Simoens, Isabelle Huys
Published in: The Patient - Patient-Centered Outcomes Research, 2020, ISSN 1178-1653
Publisher: Adis International Ltd.
DOI: 10.1007/s40271-020-00449-0

Appraising patient preference methods for decision-making in the medical product lifecycle: an empirical comparison

Author(s): Chiara Whichello, Bennett Levitan, Juhaeri Juhaeri, Vaishali Patadia, Rachael DiSantostefano, Cathy Anne Pinto, Esther W. de Bekker-Grob
Published in: BMC Medical Informatics and Decision Making, Issue 20/1, 2020, ISSN 1472-6947
Publisher: BioMed Central
DOI: 10.1186/s12911-020-01142-w

Patient preferences on rheumatoid arthritis second-line treatment: a discrete choice experiment of Swedish patients

Author(s): Karin Schölin Bywall, Ulrik Kihlbom, Mats Hansson, Marie Falahee, Karim Raza, Eva Baecklund, Jorien Veldwijk
Published in: Arthritis Research & Therapy, 2020, ISSN 1478-6354
Publisher: BioMed Central
DOI: 10.1186/s13075-020-02391-w

Opportunities and Challenges of Web-Based and Remotely Administered Surveys for Patient Preference Studies in a Vulnerable Population

Author(s): Serena Oliveri, Lucilla Lanzoni, Serena Petrocchi, Rosanne Janssens, Elise Schoefs, Isabelle Huys, Meredith Y Smith, Ian P Smith, Jorien Veldwijk, G Ardine de Wit, Gabriella Pravettoni
Published in: Patient preference and adherence, 2021, ISSN 1177-889X
Publisher: Dove Medical Press Ltd
DOI: 10.2147/ppa.s327006

Patient Preferences for Lung Cancer Treatments: A Study Protocol for a Preference Survey Using Discrete Choice Experiment and Swing Weighting

Author(s): Dario Monzani, Serena Petrocchi, Serena Oliveri, Jorien Veldwijk, Rosanne Janssens, Luca Bailo, Meredith Y Smith, Ian Smith, Elise Schoefs, Kristiaan Nackaerts, Marie Vandevelde, Evelyne Louis, Herbert Decaluwé, Paul De Leyn, Hanne Declerck, Eva G Katz, Francesco Petrella, Monica Casiraghi, Ilaria Durosini, Giulia Galli, Marina Chiara Garassino, G Ardine de Wit, Gabriella Pravettoni, Isabelle Huy
Published in: Frontiers in medicine, 2021, ISSN 2296-858X
Publisher: Frontiers Media
DOI: 10.3389/fmed.2021.689114

Treatment preferences for preventive interventions for rheumatoid arthritis: protocol of a mixed methods case study for the Innovative Medicines Initiative PREFER project

Author(s): Marie Falahee, Gwenda Simons, Rachael L DiSantostefano, Larissa Valor Méndez, Christine Radawski, Matthias Englbrecht, Karin Schölin Bywall, Stephanie Tcherny-Lessenot, Ulrik Kihlbom, Brett Hauber, Jorien Veldwijk, Karim Raza
Published in: BMJ Open, 2021, ISSN 2044-6055
Publisher: BMJ Publishing Group
DOI: 10.1136/bmjopen-2020-045851

What Matters Most to Lung Cancer Patients? A Qualitative Study in Italy and Belgium to Investigate Patient Preferences

Author(s): Serena Petrocchi, Rosanne Janssens, Serena Oliveri, Reinhard Arnou, Ilaria Durosini, Paolo Guiddi, Evelyne Louis, Marie Vandevelde, Kristiaan Nackaerts, Meredith Y. Smith, Giulia Galli, Filippo de Marinis, Letizia Gianoncelli, Gabriella Pravettoni, Isabelle Huys
Published in: Frontiers in Pharmacology, 2021, ISSN 1663-9812
Publisher: Frontiers Media S.A.
DOI: 10.3389/fphar.2021.602112

Giving Patients’ Preferences a Voice in Medical Treatment Life Cycle: The PREFER Public–Private Project

Author(s): Esther W. de Bekker-Grob, Conny Berlin, Bennett Levitan, Karim Raza, Kalliopi Christoforidi, Irina Cleemput, Jana Pelouchova, Harald Enzmann, Nigel Cook, Mats G. Hansson
Published in: The Patient - Patient-Centered Outcomes Research, Issue 10/3, 2017, Page(s) 263-266, ISSN 1178-1653
Publisher: Adis International Ltd.
DOI: 10.1007/s40271-017-0222-3

Factors and situations influencing the value of patient preference studies along the medical product lifecycle: a literature review

Author(s): Eline van Overbeeke, Chiara Whichello, Rosanne Janssens, Jorien Veldwijk, Irina Cleemput, Steven Simoens, Juhaeri Juhaeri, Bennett Levitan, Jürgen Kübler, Esther de Bekker-Grob, Isabelle Huys
Published in: Drug Discovery Today, 2018, ISSN 1359-6446
Publisher: Elsevier BV
DOI: 10.1016/j.drudis.2018.09.015

Giving patients' preferences a voice in the medical product lifecycle: w018y, when and how?: The public-private PREFER project: Work package 2

Author(s): de Bekker-Grob, Esther W.; Juhaeri, Juhaeri; Kihlbom, Ulrik; Levitan, Bennett et al.
Published in: ISPOR Value & Outcomes Spotlight, Issue Vol. 4, no 3, 2018, Page(s) p. 19-21, ISSN 2375-866X
Publisher: ISPOR

Opportunities and challenges for the inclusion of patient preferences in the medical product life cycle: a systematic review

Author(s): Rosanne Janssens, Isabelle Huys, Eline van Overbeeke, Chiara Whichello, Sarah Harding, Jürgen Kübler, Juhaeri Juhaeri, Antonio Ciaglia, Steven Simoens, Hilde Stevens, Meredith Smith, Bennett Levitan, Irina Cleemput, Esther de Bekker-Grob, Jorien Veldwijk
Published in: BMC Medical Informatics and Decision Making, Issue 19/1, 2019, ISSN 1472-6947
Publisher: BioMed Central
DOI: 10.1186/s12911-019-0875-z

Factors and Situations Affecting the Value of Patient Preference Studies: Semi-Structured Interviews in Europe and the US

Author(s): Chiara Whichello, Eline van Overbeeke, Rosanne Janssens, Karin Schölin Bywall, Selena Russo, Jorien Veldwijk, Irina Cleemput, Juhaeri Juhaeri, Bennett Levitan, Jürgen Kübler, Meredith Smith, Richard Hermann, Matthias Englbrecht, Axel J. Hueber, Alina Comanescu, Sarah Harding, Steven Simoens, Isabelle Huys, Esther W. de Bekker-Grob
Published in: Frontiers in Pharmacology, Issue 10, 2019, ISSN 1663-9812
Publisher: Frontiers Media S.A.
DOI: 10.3389/fphar.2019.01009

Methods for exploring and eliciting patient preferences in the medical product lifecycle: a literature review

Author(s): Vikas Soekhai, Chiara Whichello, Bennett Levitan, Jorien Veldwijk, Cathy Anne Pinto, Bas Donkers, Isabelle Huys, Eline van Overbeeke, Juhaeri Juhaeri, Esther W. de Bekker-Grob
Published in: Drug Discovery Today, Issue 24/7, 2019, Page(s) 1324-1331, ISSN 1359-6446
Publisher: Elsevier BV
DOI: 10.1016/j.drudis.2019.05.001

Patient Preferences in the Medical Product Life Cycle: What do Stakeholders Think? Semi-Structured Qualitative Interviews in Europe and the USA

Author(s): Rosanne Janssens, Selena Russo, Eline van Overbeeke, Chiara Whichello, Sarah Harding, Jürgen Kübler, Juhaeri Juhaeri, Karin Schölin Bywall, Alina Comanescu, Axel Hueber, Matthias Englbrecht, Nikoletta Nikolenko, Gabriella Pravettoni, Steven Simoens, Hilde Stevens, Richard Hermann, Bennett Levitan, Irina Cleemput, Esther de Bekker-Grob, Jorien Veldwijk, Isabelle Huys
Published in: The Patient - Patient-Centered Outcomes Research, Issue 12/5, 2019, Page(s) 513-526, ISSN 1178-1653
Publisher: Adis International Ltd.
DOI: 10.1007/s40271-019-00367-w

Understanding Patients' Preferences: A Systematic Review of Psychological Instruments Used in Patients' Preference and Decision Studies

Author(s): Selena Russo, Chiara Jongerius, Flavia Faccio, Silvia F.M. Pizzoli, Cathy Anne Pinto, Jorien Veldwijk, Rosanne Janssens, Gwenda Simons, Marie Falahee, Esther de Bekker-Grob, Isabelle Huys, Douwe Postmus, Ulrik Kihlbom, Gabriella Pravettoni
Published in: Value in Health, Issue 22/4, 2019, Page(s) 491-501, ISSN 1098-3015
Publisher: Blackwell Publishing Inc.
DOI: 10.1016/j.jval.2018.12.007

Patient preferences for gene therapy in haemophilia: Results from the PAVING threshold technique survey

Author(s): Eline van Overbeeke, Brett Hauber, Sissel Michelsen, Kathelijne Peerlinck, Catherine Lambert, Cedric Hermans, Phu Quoc Lê, Michel Goldman, Steven Simoens, Isabelle Huys
Published in: Haemophilia : the official journal of the World Federation of Hemophilia., 2021, ISSN 1351-8216
Publisher: Blackwell Publishing Inc.
DOI: 10.1111/hae.14401

Design, Conduct, and Use of Patient Preference Studies in the Medical Product Life Cycle: A Multi-Method Study

Author(s): Eline van Overbeeke, Rosanne Janssens, Chiara Whichello, Karin Schölin Bywall, Jenny Sharpe, Nikoletta Nikolenko, Berkeley S. Phillips, Paolo Guiddi, Gabriella Pravettoni, Laura Vergani, Giulia Marton, Irina Cleemput, Steven Simoens, Jürgen Kübler, Juhaeri Juhaeri, Bennett Levitan, Esther W. de Bekker-Grob, Jorien Veldwijk, Isabelle Huys
Published in: Frontiers in Pharmacology, Issue 10, 2019, ISSN 1663-9812
Publisher: Frontiers Media S.A.
DOI: 10.3389/fphar.2019.01395