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Health Care Analysis

, Volume 25, Issue 3, pp 225–241 | Cite as

The Benefits of Patient Involvement for Translational Research

  • Lieke van der ScheerEmail author
  • Elisa Garcia
  • Anna Laura van der Laan
  • Simone van der Burg
  • Marianne Boenink
Original Article

Abstract

The question we raise in this paper is, whether patient involvement might be a beneficial way to help determine and achieve the aims of translational (TR) research and, if so, how to proceed. TR is said to ensure a more effective movement (‘translation’) of basic scientific findings to relevant and useful clinical applications. In view of the fact that patients are supposed to be the primary beneficiaries of such translation and also have relevant knowledge based on their experience, listening to their voice early on in the innovation process might very well increase the effectiveness of the translation. After explaining how the concept of TR emerged and what it entails, this paper shows through a literature review which arguments have been put forward to promote patient involvement in health care research in a more general sense. We examine whether, and if so how, these arguments are relevant for the discourse on TR and we identify pitfalls and dilemmas. Ultimately, we conclude that it may be worthwhile to experiment with patient involvement in TR but that the design of such involvement requires careful consideration.

Keywords

Translational research Patient involvement Patient participation Patient experiential knowledge Patient involvement in research Patient participation in science 

Notes

Acknowledgment

The authors acknowledge the thoughtful comments of anonymous reviewers.

Funding

The authors are based at the University of Twente (LvdS, ALvdL and MB), and at the Radboudumc (EG, SvdB). This article is the result of a research project of the Centre for Society and the Life Sciences (CSG) in The Netherlands, funded by the Netherlands Genomics Initiative (NGI) and the Center for Translational Molecular Medicine (CTMM).

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Copyright information

© Springer Science+Business Media New York 2014

Authors and Affiliations

  • Lieke van der Scheer
    • 1
    Email author
  • Elisa Garcia
    • 2
  • Anna Laura van der Laan
    • 1
  • Simone van der Burg
    • 2
  • Marianne Boenink
    • 1
  1. 1.Department of Philosophy, Faculty of Behavioural, Management & Social SciencesUniversity of TwenteEnschedeThe Netherlands
  2. 2.Radboud University Medical Center, Radboud Institute for Health Sciences, IQ HealthcareNijmegenThe Netherlands

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