Abstract
Objectives: Inclusion of patient preference (PP) data in decision making has been largely discussed in recent years. Healthcare decision makers—regulatory and health technology assessment (HTA)—are more and more conscious of the need for a patient-centered approach to decide on optimal allocation of scarce money, time, and technological resources. This literature review aims to examine the use of and recommendations for the integration of PP in decision making.Methods: A literature search was conducted through PubMed/Medline in May 2019 to identify publications on PP studies used to inform benefit–risk assessments (BRAs) and HTAs and patient-centered projects and guidelines related to the inclusion of PPs in health policy decision making. After title and abstract screening and full-text review, selected publications were analyzed to retrieve data related to the collection, use, and/or submission of PPs informing BRA or HTA as well as attempts and initiatives in recommendations for PPs integration in decision-making processes.Results: Forty-nine articles were included: 24 attempts and pilot project discussions and 25 PP elicitation studies. Quantitative approaches, particularly discrete choice experiments, were the most used (24 quantitative elicitation studies and 1 qualitative study). The objective of assessing PPs was to prioritize outcome-specific information, to value important treatment characteristics, to provide patient-focused benefit–risk trade-offs, and to appraise the patients' willingness to pay for new technologies. Moreover, attempts and pilot projects to integrate PPs in BRAs and HTAs were identified at the European level and across countries, but no clear recommendations have been issued yet. No less than seven public and/or private initiatives have been undertaken by governmental agencies and independent organizations to set guidance targeting improvement of patients' involvement in decision making.Conclusion: Despite the initiatives undertaken, the pace of progress remains slow. The use of PPs remains poorly implemented, and evidence of proper use of these data in decision making is lacking. Guidelines and recommendations formalizing the purpose of collecting PPs, what methodology should be adopted and how, and who should be responsible for generating these data throughout the decision-making processes are needed to improve and empower integration of PPs in BRA and HTA.
Highlights
Patients are the most familiar with their own health conditions
The majority of the research and efforts identified through the literature review were recent initiatives, dated since 2014 (n = 42), while the earliest article considering patient preferences (PPs) in decision making was published in 1999 (19)
The Center for Devices and Radiological Health (CDRH) has defined PP as “qualitative or quantitative assessments of the relative desirability or acceptability to patients of specified alternatives or choices among outcomes or other attributes that differ among alternative health interventions” (46); i.e., PPs refer to patient willingness to trade off between a set of good and bad outcomes or features related to different medical interventions
Summary
Patients are the most familiar with their own health conditions. They are best positioned to provide a real-world understanding of their experiences and define their treatment preferences based on benefits and harms of treatment outcomes (1–9). While the role of patient with regard to microlevel decision, i.e., shared decision making, has significantly evolved in the last decades, when it comes to health authorities’ decision making, the relative importance of patient voice remained unclear. Health technology assessment (HTA) organizations, regulatory agencies, and decision-making bodies largely have started to explore opportunities for incorporation of patients’ perspective in their decisions (1, 3, 11, 12). Patients are claiming this greater role in healthcare decision making (3, 5, 12, 13)
Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have