IPSOR: Including the Patient Perspective in Health Care Decision Making

ISPOR is the professional society for health economics and outcomes research (HEOR). IPSOR held a number of sessions focused on patient engagement at its 20th Annual European Congress in Glasgow, Scotland, UK. An overview of the panels and the topics which were discussed:

• Patient-Powered Registries: Patient-powered registries provide an emerging data source that collect information directly from patients on a specific disease or condition. Speakers discussed the possible applications of patient-powered registries to health technology assessment bodies.The panel discussed the practical aspects of generating and synthesizing patient-reported outcomes, considering that their use in health care decisions can be controversial.
• Incorporating the Patient Voice in the NICE Process: Most global health technology assessment bodies have not yet formalized how patients have input in health care decision making. The panel discussed how the recent NICE consultation on public and patient input may offer an opportunity to increase patient engagement in the NICE process.
• Incorporating the Patient Perspective Into Health Technology Assessments: Increasingly, health technology assessment (HTA) bodies are seeking to include patients as key stakeholders in the HTA review process. Currently, however, no standard methods to obtain patients’ perspectives are agreed upon. This lack of a standardized method for data collection results in evidence that may be anecdotal, not meaningful, or difficult to interpret. The panel, representing a variety of perspectives, discussed the quality and value of patient testimonials as evidence.

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