Cited by 293Ethics in Clinical ResearchSocial Media in Health EducationMental Health and Patient Involvement

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From patients to partners: participant-centric initiatives in biomedical research

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Kaye, Jane, Curren, Liam, Anderson, Nick, Edwards, Kelly, Fullerton, Stephanie M., Kanellopoulou, Nadja, Lund, David, MacArthur, Daniel G., Mascalzoni, Deborah, Shepherd, James, Taylor, Patrick L., Terry, Sharon F., Winter, Stefan F.·2012·Nature Reviews Genetics

DOI 10.1038/nrg3218PMC PMC3806497

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Abstract

Advances in computing technology and bioinformatics mean that medical research is increasingly characterized by large international consortia of researchers that are reliant on large data sets and biobanks. These trends raise a number of challenges for obtaining consent, protecting participant privacy concerns and maintaining public trust. Participant-centred initiatives (PCIs) use social media technologies to address these immediate concerns, but they also provide the basis for long-term interactive partnerships. Here, we give an overview of this rapidly moving field by providing an analysis of the different PCI approaches, as well as the benefits and challenges of implementing PCIs.

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Authors: Kaye, J., Curren, L., Anderson, N., Edwards, K., Fullerton, S. M., Kanellopoulou, N., Lund, D., MacArthur, D. G., Mascalzoni, D., Shepherd, J., Taylor, P. L., Terry, S. F., & Winter, S. F.
Affiliations: University of Oxford (GB)
University of Washington (US)
HW Communications (United Kingdom) (GB)
Harvard University (US)
Eurac Research (IT)
Churchill Hospital (GB)
Genetic Alliance (US)
Medizinische Hochschule Hannover (DE)
Corresponding author: Kaye, Jane
ORCID: Kaye, Jane
Curren, Liam
Fullerton, Stephanie M.
MacArthur, Daniel G.
Mascalzoni, Deborah
Terry, Sharon F.
Venue: Nature Reviews Genetics
Publisher: Springer Science and Business Media LLC
Published: 2012-04-03
Volume: 13
Issue: 5
Pages: 371-376
ISSN: 1471-0056 (ISSN-L)
1471-0064
DOI: 10.1038/nrg3218
PMC: PMC3806497
OpenAlex: W2027139930
Cited by: 293
References: 25
Citations by year: 2026: 7 · 2025: 6 · 2024: 13 · 2023: 11 · 2022: 13 · 2021: 18 · 2020: 13 · 2019: 24 · 2018: 22 · 2017: 18 · 2016: 30 · 2015: 33 · 2014: 38 · 2013: 32 · 2012: 14
FWCI: 5.71
Type: journal article
Language: en
Open access: green
europepmc.org
Licence: www.springer.com/tdm (tdm)
Locations: Nature Reviews Genetics (publishedVersion)
PubMed (publishedVersion)
Europe PMC (PubMed Central) (acceptedVersion)
PubMed Central (acceptedVersion)
Funders: Wellcome Trust (096599/2/11/Z, 096599)
Engineering and Physical Sciences Research Council (EP/G002541/1)
National Center for Research Resources (UL1RR025014)
Topics: Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
Social Sciences › Health › Social Media in Health Education
Health Sciences › Health Professions › General Health Professions › Mental Health and Patient Involvement
Keywords: social media, research participant engagement, research governance, participant privacy, public trust in research, biobanks, research consortium
MeSH terms: Humans, Informed Consent, Privacy, Computational Biology, Biomedical Research, Social Media

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