PATIENTS AS PARTNERS IN RESEARCH – MAKING IT A REALITY
Author(s)
Alfonso Aguarón, Myeloma Patients Europe, Madrid, Spain; Rachel Harrington, PhD, Astellas Medical Affairs Americas, Northbrook, USA; Robert N. McBurney, PhD, Accelerated Cure Project for Multiple Sclerosis, Waltham, USA; Holly Peay, PhD, MS, CGC, RTI International, Research Triangle Park, USA
Presentation Documents
PURPOSE: This workshop will provide an overview of key components essential for patient engagement and collaboration in clinical research studies and healthcare decision making. It will also provide strategies for applying these characteristics (via case studies) to effectively engage patient participants. This workshop is intended for all stakeholders interested in implementing the new role for patients in the research and decision making process.
DESCRIPTION: The perspective of patients and their representatives included in all stages of the research and decision making process has become increasingly important and often cited by researchers, government agencies and patient advocates as an essential step in improving healthcare delivery and outcomes. There is some debate as to how to get patients to be (a) more aware and involved in clinical research, (b) knowledgeable on patient-centered subject matter, and (c) comfortable with making decisions regarding medicines and technology. Several organizations have developed frameworks to effectively engage patients and to navigate the complex healthcare setting. The workshop will identify key components of patient collaboration ranging from low level of interaction through consultation, to partnership and shared leadership. Examples of these components will be presented via three different case studies of patient involvement in research. Challenges, opportunities and strategies for effective patient engagement in clinical research will be discussed with the audience.
Conference/Value in Health Info
2016-05, ISPOR 2016, Washington DC, USA
Code
W13
Topic
Health Policy & Regulatory, Patient-Centered Research