The future for outcomes research and clinical trials?

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There is growing momentum and recognition among researchers, regulatory agencies, policy makers and payers towards a more patient-centric approach to health research, including clinical trials. This can be achieved through active engagement and partnering with patients.  Indeed, funding bodies such as the US Patient-Centered Outcomes Institute (PCORI) mandate patients being actively involved as partners throughout the research process, rather than just as participants. The rational for increasing patient engagement (PE) generally follows two aims:

  • a moral and ethical drive to empower patients as active participants in the research process which is an otherwise expert-dominated activity.
  • to optimise the validity, design, applicability, dissemination of the research itself and the effectiveness of resulting interventions.

Within health outcomes research and specifically the development of patient-reported outcomes (PROs) there is evidence to indicate that involving patients as partners in the research process leads to more patient-relevant outcome assessments.  In such research there can be a view that patient-reports developed based on qualitative research with patients are intrinsically patient-centric.  However, more can be done to truly engage patients as partners throughout the process.

This webinar will focus on specific examples of patient engagement from research conducted in oncology and inflammatory disease.