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Increasing patient participation in drug development

Nature Biotechnology volume 33, pages 134–135 (2015)Cite this article

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To the Editor:

An article in your January issue1 highlights the struggles of the drug industry to engage with patients on social media. Today, patients take a more active role in their own care2; advise the US Food and Drug Administration on what really matters in relation to their disease, diagnosis and treatment3; and influence research priorities at the Patient-Centered Outcomes Research Institute in Washington, DC4. However, a similar level of engagement appears to be lacking in pharmaceutical development. We propose involving patients in the design and execution of research programs not as merely “empty rituals of participation”5 but as true research partners. As focus on patients becomes the norm, listening to them will help companies align scientific, regulatory and reimbursement decision making with the value that patients perceive in new medicines.

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Authors and Affiliations

  1. PatientsLikeMe, 155 2nd Street, Cambridge, 02141, MA, USA

    Paul Wicks & Maria Lowe

  2. Novartis, Health Economics & Outcomes Research, One Health Plaza, East Hanover, 07936, NJ, USA

    Susan Gabriel, Slaven Sikirica, Rahul Sasane & Stephen Arcona

Authors
  1. Paul Wicks
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  2. Maria Lowe
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  3. Susan Gabriel
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  4. Slaven Sikirica
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  5. Rahul Sasane
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  6. Stephen Arcona
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Corresponding author

Correspondence to Paul Wicks.

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Competing interests

P.W. and M.L. are employees of PatientsLikeMe and hold stock options in the company. PatientsLikeMe receives research funding from the pharmaceutical industry. S.G., S.S., R.S., and S.A. are employees of Novartis. This work was sponsored by Novartis.

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Wicks, P., Lowe, M., Gabriel, S. et al. Increasing patient participation in drug development. Nat Biotechnol 33, 134–135 (2015). https://doi.org/10.1038/nbt.3145

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