Patient and Public Involvement in Healthcare Decision Making: Are We Maximizing Opportunities?
Author(s)
Ryll B1, Bere N2, Mühlbacher AC3, LeCam Y4
1Melanoma Patient Network Europe, and Past Chair of the Patient Advocates Working Group, European Society for Medical Oncology, Uppsala, Sweden, 2European Medicines Agency, Amsterdam, Netherlands, 3Hochschule Neubrandenburg, Neubrandenburg, MV, Germany, 4Eurordis, Rare Diseases Europe, Paris, France
An urgent need exists for a more holistic and meaningful approach to citizen involvement in healthcare decision making that includes both those with (ie, patients) and without (ie, the general public) disease-specific interests. Several decision-making bodies state that they involve the general public, but the role of the public’s participation is often not clearly and/or transparently defined, and the impact of this input is often not enumerated in publicly available documents. Patient engagement to inform a specific intervention for a particular disease has been practiced and extensively discussed. However, patient or general public involvement in assessing the implications of funding decisions across technologies, including opportunity costs, is not widely practiced or addressed. There is inadequate insight into how shifts of perspectives associated with the change in health status (eg, healthy to sick) impact value judgements or how normative judgements about the health of certain groups (eg, the young, or people with severe or rare diseases) are given additional ‘weight’ in technology adoption decisions. What are society’s underlying—and often not explicit—value assumptions that direct resource allocation? How can we make these assumptions more explicit and transparent? And how generalizable are these assumptions? Should non-health outcomes be considered and, if so, how should they be traded-off against health outcomes?
A panel of experts, including patient organization representatives, academics, and decision makers, will discuss opportunities to think differently and explore options beyond currently practiced patient/public involvement, not just in the one-off technology decision-making process, but at a higher level of resource allocation in healthcare.
Conference/Value in Health Info
2020-11, ISPOR Europe 2020, Milan, Italy