PATIENT INVOLVEMENT IN THE DRUG LIFE CYCLE ACCORDING TO STAKEHOLDERS- EXPLORING THE GAP BETWEEN THEORY AND PRACTICE

Author(s)

Janssens R1, van Overbeeke E1, Verswijvel L1, Meeusen L1, Coenegrachts C1, Pauwels K1, Dooms M2, Stevens H3, Simoens S1, Huys I1
1KU Leuven, Leuven, Belgium, 2University Hospitals Leuven, Leuven, Belgium, 3Université Libre Bruxelles, Brussels, Belgium

OBJECTIVES: This study aimed to map experiences and perspectives of Belgian healthcare stakeholders towards involving patients in the drug life cycle. METHODS: Interviews (n=22) were conducted with academics, hospital pharmacists and representatives from health insurance funds, the Belgian drug reimbursement agency, pharmaceutical industry and patient organisations. Interviews underwent a ‘framework analysis’. Surveys were completed by hospital visitors (n=108) and analysed descriptively. RESULTS: Interviews provided an in-depth understanding of the current landscape, opportunities and barriers related to patient involvement in the drug life cycle. Despite an increasing amount of efforts, interviewees labelled the level of actively involving patients as rather low and scattered across phases of the drug life cycle. Opportunities for patient involvement highlighted by interviewees were: i) informing early development decisions on which treatments to develop, ii) selecting clinical trial endpoints and iii) clinical trial protocol design. However, remaining questions surrounding patient knowledge, and particularly how and which patients to involve represent important barriers towards practical implementation of patient involvement in the drug life cycle. Seventy-seven percent of survey participants indicated to be willing to participate in patient preference studies. Reasons for participating mentioned most frequently were: i) to improve development of treatments, ii) because it is important to explore and listen to patient preferences and iii) to have a voice as patients. CONCLUSIONS: The barriers identified in this study hamper transitioning patient involvement from theory to practice. Bridging this gap will require addressing the identified barriers and unresolved questions surrounding the right methodology for involving patients, the ‘right patients’ to involve and means to increase patient knowledge. In order to do so, further research should focus on assessing the value of methods that allow to indirectly capture the patients’ perspective both in the context of drug development as well as in the context of drug evaluation.

Conference/Value in Health Info

2018-11, ISPOR Europe 2018, Barcelona, Spain

Value in Health, Vol. 21, S3 (October 2018)

Code

PHP9

Topic

Health Policy & Regulatory, Health Service Delivery & Process of Care, Health Technology Assessment, Patient-Centered Research

Topic Subcategory

Approval & Labeling, Decision & Deliberative Processes, Health Care Research, Patient Behavior and Incentives, Reimbursement & Access Policy

Disease

Multiple Diseases

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