Caroline Halford, Publishing Manager at Adis, reviews the evolution of patient-centred outcomes research (PCOR) and the increasing involvement of patients in research and publications.
Recorded 2 November 2016 at a MedComms Networking event in Oxford. Produced by NetworkPharma.tv
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Patient-centricity – a patient-centred approach to healthcare and pharmaceutical product development – has been growing since the mid-90s, in parallel with the growth of the worldwide web. The US Patient Protection and Aﬀordable Care Act (ACA) 2010 gave this development a boost, in placing new emphasis on measuring patient experience and building on this to improve care. The establishment by Congress of the Patient-Centered Outcomes Research Institute (PCORI), which deﬁnes patient-centered outcomes research as: ‘Help[ing] people and their caregivers
communicate and make informed healthcare decisions, allowing their voices to be heard in assessing the value of healthcare options’, marked a turning point away from disease-centric research towards patient-centric research and product development. The pharmaceutical industry has become much more actively involved in partnering with patients in the development of treatments, in a variety of ways, while patient-reported outcomes (PROs) are becoming more of a mainstay in clinical trials. Many journals now publish PCOR and PROs. Journals with a specific patient-centric focus, such as The Patient, have been launched; others have been publishing resources aimed at patients, co-authored patient-physician perspectives, and patient-friendly summaries of clinical studies and guidelines. In 2016, the European Medicines Agency (EMA) mandated patient lay summaries of clinical trials alongside clinical trials data appearing on its website. JAMA now runs collections of articles for patients they call ‘patient pages’, while the BMJ’s award-winning patient-partnership initiative, launched in 2014, has led the field in encouraging authors and researchers to think in terms of co-creating publications and research.
Written by Penny Gray, Freelance Medical Writer
We are building a library of free webcasts, like this one, for the global MedComms Community and others at http://www.networkpharma.tv and we’d welcome your suggestions for new topics and speakers.
Full details of this MedComms Networking event are at http://medcommsnetworking.com/event80.html
Caroline’s presentation (PDF format) is at http://medcommsnetworking.com/presentations/halford_021116.pdf
Caroline’s Linkedin page is at https://www.linkedin.com/in/caroline-halford-09295a17/
More about Adis can be found at http://www.springer.com/adis
Filming and technical direction by Mario Crispino, Freelance Cameraman & Editor
[For the avoidance of doubt: this video is intended to be freely accessible to all. Please feel free to share and use however you like. Cheers Peter Llewellyn, Director NetworkPharma Ltd and Founder of the MedComms Networking Community activity at http://www.medcommsnetworking.com]