Strengthening the Patient Voice in Health Outcome Measurement in Real-World Data in Europe – The Health Outcomes Observatory

Speaker(s)

Stamm T1, Andrews M1, Bénard AHM2, Cossio Y3, Delnoij D4, Kalra D5, Koppert L6, Long P7, Mosor E1, Otto L8, Rose M9, Schøler Kristensen J10, Thwaites R11, Styliadou M12
1Medical University of Vienna, Vienna, Austria, 2Vall d’Hebron University Hospital, Barcelona, Spain, 3Hospital Vall d'Hebron, Barcelona, Spain, 4Erasmus University Rotterdam, Rotterdam, Netherlands, 5The European Institute for Innovation through Health Data, Ghent, Belgium, 6Erasmus medical center, Rotterdam, Netherlands, 7Medical University of Vienna, Vienna, 9, Austria, 8Charité – Universitätsmedizin Berlin, Berlin, Germany, 9Charité – Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin and Humboldt-Universität zu Berlin, Berlin, Germany, 10Central Denmark Region, Copenhagen, Denmark, 11Takeda, London, UK, 12Takeda, Zurich, Switzerland

OBJECTIVES: To ensure sustainability, healthcare systems need to consider patient outcomes when evaluating reimbursement. Critical levers for accelerating this are patient engagement and a more comprehensive, standardized collection of patient outcomes. However, real-world outcomes data including Patient-Reported Outcomes (PROs) on a population level are currently lacking in many European countries. Such data could be the basis for outcomes-based reimbursement, allowing for better resource allocation and faster access to therapeutic innovation. A focus on outcomes that matter most to patients furthermore could enable improved patient-clinician communication, all of which lead to better patient care.

METHODS: The Health Outcomes Observatory (H2O) project funded by the Innovative Medicines Initiative is a public-private partnership which sets up a multi-jurisdictional not-for-profit ecosystem with independent entities and a multistakeholder governance to incorporate patient-reported and other health outcomes into healthcare decision-making within four European countries. H2O initially focuses on diabetes, cancer, and inflammatory bowel disease, evaluating and selecting meaningful outcome standards to ensure broad acceptability among all stakeholders.

RESULTS: Outcome measurement in H2O also includes a generic component standardized across diseases for wider comparisons of outcomes and a reduction of patient burden by using fewer targeted assessments. H2O works with technology partners to provide digital tools for patients, and dashboards for patients and healthcare providers in order to incorporate PROs in routine clinical practice.

CONCLUSIONS: Longitudinal outcome measurement including PROs in real world setting and at a population level can offer a meaningful evidence basis for health policy and decision making health at population level besides empowering patients at individual level.

Code

RWD122

Topic

Real World Data & Information Systems

Topic Subcategory

Data Protection, Integrity, & Quality Assurance, Distributed Data & Research Networks, Health & Insurance Records Systems

Disease

SDC: Diabetes/Endocrine/Metabolic Disorders (including obesity), SDC: Oncology