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

Participant-centred initiatives use social media technologies to allow long-term interactive partnerships to be established between study participants and researchers. These varied initiatives improve research governance and quality and give participants greater knowledge of and control over how their data are used. 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.