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Patient Involvement in the Lifecycle of Medicines According to Belgian Stakeholders: The Gap Between Theory and Practice

Background: Patient involvement is often acknowledged as an important aspect of the lifecycle of medicines. Although different typologies exist, patient involvement has been described as the involvement of patients in decision-making regarding medicines. In view of the diversity of stakeholders and...

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Autores principales: Janssens, Rosanne, van Overbeeke, Eline, Verswijvel, Lotte, Meeusen, Lissa, Coenegrachts, Carolien, Pauwels, Kim, Dooms, Marc, Stevens, Hilde, Simoens, Steven, Huys, Isabelle
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2018
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6193089/
https://www.ncbi.nlm.nih.gov/pubmed/30364285
http://dx.doi.org/10.3389/fmed.2018.00285
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author Janssens, Rosanne
van Overbeeke, Eline
Verswijvel, Lotte
Meeusen, Lissa
Coenegrachts, Carolien
Pauwels, Kim
Dooms, Marc
Stevens, Hilde
Simoens, Steven
Huys, Isabelle
author_facet Janssens, Rosanne
van Overbeeke, Eline
Verswijvel, Lotte
Meeusen, Lissa
Coenegrachts, Carolien
Pauwels, Kim
Dooms, Marc
Stevens, Hilde
Simoens, Steven
Huys, Isabelle
author_sort Janssens, Rosanne
collection PubMed
description Background: Patient involvement is often acknowledged as an important aspect of the lifecycle of medicines. Although different typologies exist, patient involvement has been described as the involvement of patients in decision-making regarding medicines. In view of the diversity of stakeholders and types of decisions in which patients might be involved, an in-depth understanding of these stakeholders' views toward involving patients in the lifecycle of medicines is essential. Methods: Interviews and surveys were used to gain insights into the perspectives and experiences of Belgian healthcare stakeholders. Interviews (n = 22) were conducted with academics, hospital pharmacists and representatives from health insurance funds, the Belgian reimbursement agency, pharmaceutical industry and patient organizations. Interviews underwent a framework analysis. Surveys (n = 108) were completed by hospital visitors and analyzed descriptively. Results: Despite an increasing amount of efforts to involve patients, interviewees labeled the level of actively involving patients as rather low and scattered across the different phases of the lifecycle of medicines. The main opportunities for patient involvement highlighted by interviewees were for: (i) informing early development decisions on which treatments to develop, (ii) clinical trial endpoint selection and (iii) clinical trial protocol design. However, remaining questions surrounding patient knowledge, and particularly how and which patients to involve represent important barriers toward implementing patient involvement in the lifecycle of medicines. Of survey participants, 77% indicated to be willing to participate in patient preference studies. Reasons for participating mentioned most frequently were “to improve development of treatments,” because “it is important to explore and listen to patient preferences” and “to have a voice as patients”. Conclusions: The barriers identified in this study hamper transitioning patient involvement from theory to practice. Bridging this gap requires addressing the identified barriers and unresolved questions surrounding the right methodology for involving patients, the “right patients” to involve and means to increase patient knowledge. In order to do so, further research should focus on assessing the value of methods that allow to indirectly capture patients' perspective both in the context of development as well as in the context of evaluation.
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spelling pubmed-61930892018-10-25 Patient Involvement in the Lifecycle of Medicines According to Belgian Stakeholders: The Gap Between Theory and Practice Janssens, Rosanne van Overbeeke, Eline Verswijvel, Lotte Meeusen, Lissa Coenegrachts, Carolien Pauwels, Kim Dooms, Marc Stevens, Hilde Simoens, Steven Huys, Isabelle Front Med (Lausanne) Medicine Background: Patient involvement is often acknowledged as an important aspect of the lifecycle of medicines. Although different typologies exist, patient involvement has been described as the involvement of patients in decision-making regarding medicines. In view of the diversity of stakeholders and types of decisions in which patients might be involved, an in-depth understanding of these stakeholders' views toward involving patients in the lifecycle of medicines is essential. Methods: Interviews and surveys were used to gain insights into the perspectives and experiences of Belgian healthcare stakeholders. Interviews (n = 22) were conducted with academics, hospital pharmacists and representatives from health insurance funds, the Belgian reimbursement agency, pharmaceutical industry and patient organizations. Interviews underwent a framework analysis. Surveys (n = 108) were completed by hospital visitors and analyzed descriptively. Results: Despite an increasing amount of efforts to involve patients, interviewees labeled the level of actively involving patients as rather low and scattered across the different phases of the lifecycle of medicines. The main opportunities for patient involvement highlighted by interviewees were for: (i) informing early development decisions on which treatments to develop, (ii) clinical trial endpoint selection and (iii) clinical trial protocol design. However, remaining questions surrounding patient knowledge, and particularly how and which patients to involve represent important barriers toward implementing patient involvement in the lifecycle of medicines. Of survey participants, 77% indicated to be willing to participate in patient preference studies. Reasons for participating mentioned most frequently were “to improve development of treatments,” because “it is important to explore and listen to patient preferences” and “to have a voice as patients”. Conclusions: The barriers identified in this study hamper transitioning patient involvement from theory to practice. Bridging this gap requires addressing the identified barriers and unresolved questions surrounding the right methodology for involving patients, the “right patients” to involve and means to increase patient knowledge. In order to do so, further research should focus on assessing the value of methods that allow to indirectly capture patients' perspective both in the context of development as well as in the context of evaluation. Frontiers Media S.A. 2018-10-11 /pmc/articles/PMC6193089/ /pubmed/30364285 http://dx.doi.org/10.3389/fmed.2018.00285 Text en Copyright © 2018 Janssens, van Overbeeke, Verswijvel, Meeusen, Coenegrachts, Pauwels, Dooms, Stevens, Simoens and Huys. http://creativecommons.org/licenses/by/4.0/ This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
spellingShingle Medicine
Janssens, Rosanne
van Overbeeke, Eline
Verswijvel, Lotte
Meeusen, Lissa
Coenegrachts, Carolien
Pauwels, Kim
Dooms, Marc
Stevens, Hilde
Simoens, Steven
Huys, Isabelle
Patient Involvement in the Lifecycle of Medicines According to Belgian Stakeholders: The Gap Between Theory and Practice
title Patient Involvement in the Lifecycle of Medicines According to Belgian Stakeholders: The Gap Between Theory and Practice
title_full Patient Involvement in the Lifecycle of Medicines According to Belgian Stakeholders: The Gap Between Theory and Practice
title_fullStr Patient Involvement in the Lifecycle of Medicines According to Belgian Stakeholders: The Gap Between Theory and Practice
title_full_unstemmed Patient Involvement in the Lifecycle of Medicines According to Belgian Stakeholders: The Gap Between Theory and Practice
title_short Patient Involvement in the Lifecycle of Medicines According to Belgian Stakeholders: The Gap Between Theory and Practice
title_sort patient involvement in the lifecycle of medicines according to belgian stakeholders: the gap between theory and practice
topic Medicine
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6193089/
https://www.ncbi.nlm.nih.gov/pubmed/30364285
http://dx.doi.org/10.3389/fmed.2018.00285
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