PATIENT POWERED REGISTRIES- USEFUL FOR HEALTH TECHNOLOGY ASSESSMENT OR NOT?

Author(s)

Chantal Guilhaume, PharmD, Haute Autorité de Santé, Saint-Denis La Plaine, France; Robert McBurney, PhD, Accelerated Cure Project for MS, Waltham, USA; Elisabeth M. Oehrlein, BA, University of Maryland School of Pharmacy, Baltimore, USA; Gurmit Sandhu, B Pharm (Hons), MBA, MPH, Gurmit Sandhu Consulting GmbH, Basel, Switzerland

PURPOSE: Patient powered registries (PPR’s) are emerging data sources that collect information directly from patients on a specific disease or condition. These data are potentially useful to health technology assessment (HTA) bodies, in particular for understanding natural history of disease, current management, and utilization across subpopulations. However, researchers and decision-makers alike may be unfamiliar with these new sources of data. This workshop will introduce participants to PPRs and consider possible applications to HTA. Audience members will be invited to participate in a case study of multiple sclerosis (MS), including an overview of evidence utilized by a sample of European and North American HTAs for recently approved MS medications and a presentation of data capabilities of an MS PPR. DESCRIPTION: Participants will be provided an overview of the breadth of PPRs, possible applications of PPRs, and tools for identifying appropriate PPRs. Considerations include opportunities to improve patient representativeness in HTA decision-making and how PPR data could be complementary to existing data already incorporated into HTA decision-making. This workshop will include a case study comparing recent HTA evaluations with data available in the iConquerMS PPR. The workshop will conclude with an audience discussion on the role of PPRs in HTA. Discussion themes include how and when it is appropriate to incorporate PPR’s; minimum standards; types of data that can be gleaned from PPRs, and stakeholder perspectives.

Conference/Value in Health Info

2017-11, ISPOR Europe 2017, Glasgow, Scotland

Code

W2

Topic

Health Technology Assessment, Real World Data & Information Systems

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