Library
Indulge yourself in new knowledge!
Here you can find some interesting literature relating to outcomes research and management.
Value-based healthcare
Huberts, A. S., Long, P., Porth, A. K., Fierens, L., Carney, N. C., Koppert, L., … & Stamm, T. (2025, December). Tracking Chronic Diseases via Mobile Health Applications: Which User Experience Aspects Are Key? In Healthcare (Vol. 13, No. 24, p. 3272).
Background
A key barrier to realizing the full potential and long-term collection of patient-reported outcomes (PROs) is the limited understanding of user experience (UX) factors that influence sustained patient engagement with digital PRO tools. Most existing research focuses on disease-specific or country-specific solutions, leaving a gap in identifying shared UX determinants that could inform scalable, cross-disease European digital health frameworks. This fragmentation hinders interoperability and increases development costs by requiring separate tools for each context. This case study aims to address this gap by identifying key UX features that optimize PRO collection across diverse chronic conditions in Europe within the Health Outcomes Observatory project, enhancing continuous (primary use) and large-scale (secondary use) data collection.
Objective
This study aimed to identify and analyze key UX factors that support adoption and sustained use of PRO collection tools among patients with chronic diseases across multiple European countries.
Methods
Patient focus groups were conducted in four chronic disease areas: cancer, inflammatory bowel disease (IBD), and diabetes (type I and II) across six European countries. Participants were recruited purposively through national patient advisory boards to ensure diversity in age, gender, and disease type. Sessions were moderated by trained qualitative researchers following a standardized guide, and discussions were transcribed verbatim and coded in researcher pairs to ensure intercoder reliability through iterative consensus. A modified thematic analysis, guided deductively by the UX Honeycomb model and inductively by emergent themes, was used to identify cross-disease UX determinants.
Results
In total, 17 patients and patient representatives participated (76% female; 4 diabetes, 6 IBD and 7 cancer). We identified six core UX factors driving patient engagement for all disease groups: compatibility with other technologies, direct communication with the care team, personalization, ability to share data, the need for educational material and data protection were identified as key aspects of PRO technologies. However, the customizability of the app is crucial. Not all disease groups had the same needs, and participants specifically requested that the app provide information relevant to their own condition. Disease-specific needs, like T1D patients desiring glucose monitoring integration, were identified. IBD patients highlighted flare detection abilities and cancer patients especially sought side-effect comparisons.
Conclusions
Our findings indicate that a unified yet customizable PRO platform can address shared UX needs across diseases, improving patient engagement and data quality. Incorporating features such as seamless data transfer, personalization, feedback, and strong privacy measures can foster trust and long-term adoption across European contexts. In addition to some disease-specific issues, most needs for the backbone of the app were shared among the disease areas. This shows that a shared app between diseases might be preferable and, in case of comorbidities, could ease self-management for patients. Last, to ensure full potential for every user and every disease, customization is crucial.
Long, Preston, Alize Rogge, Ann-Kristin Porth, Evelyn Gross, Liselotte Fierens, Belle de Rooij, Nadia Kamminga, and Tanja Stamm. Standardizing patient-reported outcomes across diseases: development of a novel generic patient-reported outcome set and human needs assessment. Frontiers in Health Services 5 (2025): 1497055. doi:10.3389/frhs.2025.1497055
Objectives
Patient-reported outcomes (PROs) are an essential component in the implementation of value-based health care. Up to now, no consensus exists on the appropriateness of PROs used across diseases, e.g., to allow for comparability or to assess disease impact. The aim of this study was to develop an international, multi-stakeholder consensus on a generic PRO set applicable for different stakeholders and diseases within of the Health Outcomes Observatory (H2O) project funded by the EU Innovative Medicines Initiative.
Methods
To begin, a literature review was conducted to identify the most frequently utilized generic PROs followed by a three-round Delphi consensus procedure. The resulting outcome set was then cross-referenced with disease-specific outcome sets for lung and metastatic breast cancer, diabetes, and inflammatory bowel diseases to identify overlaps and gaps. Lastly, the identified generic outcome domains were mapped to the Max Neef’s human needs model to explore the degree to which the generic domains address a general concept of wellbeing.
Results
The literature search resulted in 2357 articles from which 190 PROMs and their measured domains were extracted. The Delphi consensus procedure reduced these to 10 core domains (mental, physical and social wellbeing, overall health status, fatigue, pain, sleep quality, sexuality, self-efficacy, treatment satisfaction). In comparison to the human needs model, needs such as identity and leisure were disregarded.
Conclusions
The H2O generic outcome set presents a disease-generic, domain-centered PRO framework building the groundwork for health data spaces and supporting consistency in treatment outcomes across different sites, settings, and patient populations.
Stamm T, Bott N, Thwaites R, Mosor E, Andrews MR, Borgdorff J, et al. Building a Value-Based Care Infrastructure in Europe: The Health Outcomes Observatory. NEJM Catalyst. 2021;2(3). doi:10.1056/CAT.21.0146.
Sustainable health care systems should be focused on outcomes instead of reimbursing for the services provided. Critical levers for accelerating this are patient engagement and a more comprehensive, standardized collection of patient outcomes. Also, more expertise is required on how these data can best be incorporated into the care process. The Innovative Medicines Initiative project, a public-private partnership in the European Union, has launched Health Outcomes Observatory (H2O), a multi-jurisdictional ecosystem to incorporate patient-reported and other health outcomes into health care decision-making across Europe. This initiative will initially focus on diabetes, cancer, and inflammatory bowel disease, evaluating and selecting meaningful outcome standards in a way that ensures broad acceptability among all stakeholders. H2O will provide digital tools for patients and implement a state-of-the-art governance system that gives patients autonomy to control their data flows and allows for ethical data sharing, while enabling value-based care and driving better outcomes for patients.