TY - JOUR
T1 - From patients to partners
T2 - Participant-centric initiatives in biomedical research
AU - Kaye, Jane
AU - Curren, Liam
AU - Anderson, Nicholas
AU - Edwards, Kelly
AU - Fullerton, Stephanie M.
AU - Kanellopoulou, Nadja
AU - Lund, David
AU - MacArthur, Daniel G.
AU - Mascalzoni, Deborah
AU - Shepherd, James
AU - Taylor, Patrick L.
AU - Terry, Sharon F.
AU - Winter, Stefan F.
PY - 2012/5
Y1 - 2012/5
N2 - 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.
AB - 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.
UR - http://www.scopus.com/inward/record.url?scp=84859900558&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=84859900558&partnerID=8YFLogxK
U2 - 10.1038/nrg3218
DO - 10.1038/nrg3218
M3 - Article
C2 - 22473380
AN - SCOPUS:84859900558
VL - 13
SP - 371
EP - 376
JO - Nature Reviews Genetics
JF - Nature Reviews Genetics
SN - 1471-0056
IS - 5
ER -