My husband’s diagnosis with melanoma and our struggle to access effective therapy challenged what I had learnt about medical research. I have since founded a patient network, becoming a vocal advocate for patient-centric drug development. Herein, I discuss some of the lessons I have learnt.
This is a preview of subscription content, access via your institution
Access options
Access Nature and 54 other Nature Portfolio journals
Get Nature+, our best-value online-access subscription
$29.99 / 30 days
cancel any time
Subscribe to this journal
Receive 12 print issues and online access
$209.00 per year
only $17.42 per issue
Buy this article
- Purchase on Springer Link
- Instant access to full article PDF
Prices may be subject to local taxes which are calculated during checkout
References
Appelbaum, P. S. et al. False hopes and best data: consent to research and the therapeutic misconception. Hastings Cent. Rep. 17, 20–24 (1987).
Burke, N. J. Rethinking the therapeutic misconception: social justice, patient advocacy, and cancer clinical trial recruitment in the US safety net. BMC Med. Ethics 15, 68 (2014).
World Medical Association. WMA declaration of Helsinki — ethical principles for medical research involving human subjects. WMA https://www.wma.net/policies-post/wma-declaration-of-helsinki-ethical-principles-for-medical-research-involving-human-subjects/ (updated 9 Jul 2018).
Postmus, D. et al. Incorporating patient preferences into drug development and regulatory decision making: results from a quantitative pilot study with cancer patients, carers, and regulators. Clin. Pharmacol. Ther. 99, 548–554 (2016).
Nichols, E. Expanding Access to Investigational Therapies for HIV Infection and AIDS: March 12–13, 1990 Conference Summary (National Academies Press, 1991).
Wicks, P., Vaughan, T. & Heywood, J. Subjects no more: what happens when trial participants realize they hold the power? BMJ 348, g368 (2014).
Author information
Authors and Affiliations
Corresponding author
Ethics declarations
Competing interests
B.R. has received remuneration for consultancy in patient-related affairs from Amgen, Bristol-Myers Squibb (BMS), Merck, Sharp & Dohme (MSD), Novartis, Pfizer and Takeda. Melanoma Patient Network Europe (MPNE) receives funding from Amgen, BMS, Delcath, Idera, Immunocore, Incyte, MSD, Novartis and Roche. This funding does not give any right or influence over programmes, contents, faculty, any other editorial-related work nor the activities of MPNE in general.
Additional information
Related links
ECAB: http://www.eatg.org/european-community-advisory-board-ecab/
EUPATI: https://www.eupati.eu/
EURORDIS Community Advisory Board (CAB) Programme: https://www.eurordis.org/content/eurordis-community-advisory-board-cab-programme
Melanoma Patient Network Europe: http://www.mpneurope.org
Rights and permissions
About this article
Cite this article
Ryll, B. No other interest can take precedence — a patient’s perspective on oncology drug development. Nat Rev Clin Oncol 16, 461–462 (2019). https://doi.org/10.1038/s41571-019-0230-4
Published:
Issue Date:
DOI: https://doi.org/10.1038/s41571-019-0230-4
This article is cited by
-
ANNOUNCE prompts questions over the Accelerated Approval process
Nature Reviews Clinical Oncology (2019)
