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What do pharmaceutical industry professionals in Europe believe about involving patients and the public in research and development of medicines? A qualitative interview study

Authors : Suzanne Parsons, Bella Starling, Christine Mullan-Jensen, Su-Gwan Tham, Kay Warner, Kim Wever

Abstract

Objectives

To explore European-based pharmaceutical industry professionals’ beliefs about patient and public involvement (PPI) in medicines research and development (R&D).

Setting Pharmaceutical companies in the UK, Poland and Spain.

Participants 21 pharmaceutical industry professionals, four based in the UK, five with pan-European roles, four based in Spain and eight based in Poland.

Method Qualitative interview study (telephone and face-to-face, semistructured interviews). All interviews were audio taped, translated (where appropriate) and transcribed for analysis using the Framework approach.

Results

21 pharmaceutical industry professionals participated. Key themes were: beliefs about (1) whether patients and the public should be involved in medicines R&D; (2) the barriers and facilitators to PPI in medicines R&D and (3) how the current relationships between the pharmaceutical industry, patient organisations and patients influence PPI in medicines R&D.

Conclusions

Although interviewees appeared positive about PPI, many were uncertain about when, how and which patients to involve. Patients and the public's lack of knowledge and interest in medicines R&D, and the pharmaceutical industry's lack of knowledge, interest and receptivity to PPI were believed to be key challenges to increasing PPI. Interviewees also believed that relationships between the pharmaceutical industry, patient organisations, patients and the public needed to change to facilitate PPI in medicines R&D. Existing pharmaceutical industry codes of practice and negative media reporting of the pharmaceutical industry were also seen as negative influences on these relationships.

Citation: Suzanne Parsons, Bella Starling, Christine Mullan-Jensen, Su-Gwan Tham, Kay Warner, Kim Wever What do pharmaceutical industry professionals in Europe believe about involving patients and the public in research and development of medicines? A qualitative interview study BMJ Open 2016;6:e008928 doi:10.1136/bmjopen-2015-008928

Received: 29 May 2015 Revised: 25 August 2015 Accepted: 16 October 2015 Published: 7 January 2016

Copyright: This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/

Collaborators

Kate Dack (University of Manchester), Celine Lewis (Genetic Alliance UK, now University College London), Mary Uhlenhopp (Amgen), Anne Marie Dillon (Genzyme), Mike Hardman (AstraZeneca), and Barbara Haake (Association of Research Base Pharmaceutical Companies -vfa). GFK ad hoc research and CEM Opinion Research.

Contributors

SP was the project manager for the needs assessment work package, and led on the design of the study materials that were used in all countries. She designed the tendering process which was used to select the subcontractors in Spain and Poland, and liaised with them regularly during the course of the field work. She led on the data analysis and wrote the first and subsequent drafts of this paper. BS was the project lead for the needs assessment work package, and she contributed to the design of the study materials, topic guide and tendering process. She led the team who selected the subcontractors and has contributed to the data analysis and to drafts of this paper. KW and CM-J were the pharmaceutical industry lead and deputy leads, respectively, for the needs assessment work package. They also contributed to the design of the study materials, topic guide and tendering process, were part of the team selecting the subcontractors, and contributed to the data analysis and to drafts of this paper. S-GT was the project assistant for the needs assessment work package, and assisted in the design of the study materials, topic guide and tendering process. She also contributed to drafts of this paper. KW contributed to the design of study materials, topic guide and data analysis.

Funding

This work was carried out on behalf of the EUPATI Consortium whose members are listed here (http://www.patientsacademy.eu/index.php/en/about-eupati). EUPATI is funded by Innovative Medicines Initiative Joint Undertaking under grant agreement number 115334 resources which are composed of financial contribution from the European Union's Seventh Framework Programme (FP7/2007–2013) and EFPIA companies.

Competing interests KW is employed by GlaxoSmithKline, and CM-J was employed by Novo Nordisk when she was involved in this work. None of the other authors have any competing interests.

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