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Accepted for/Published in: Journal of Medical Internet Research

Date Submitted: Apr 28, 2024
Open Peer Review Period: May 2, 2024 - Jun 27, 2024
Date Accepted: Dec 19, 2024
Date Submitted to PubMed: Mar 25, 2025
(closed for review but you can still tweet)

The final, peer-reviewed published version of this preprint can be found here:

Stakeholder Consensus on an Interdisciplinary Terminology to Enable the Development and Uptake of Medication Adherence Technologies Across Health Systems: Web-Based Real-Time Delphi Study

Dima AL, Nabergoj Makovec U, Ribaut J, Haupenthal F, Barnestein-Fonseca P, Goetzinger C, Grant SP, Jácome C, Smits D, Tadic I, van Boven J, Tsiligianni I, Herdeiro MT, Roque F, European Network to Advance Best Practices and Technology on Medication AdherencE (ENABLE)

Stakeholder Consensus on an Interdisciplinary Terminology to Enable the Development and Uptake of Medication Adherence Technologies Across Health Systems: Web-Based Real-Time Delphi Study

J Med Internet Res 2025;27:e59738

DOI: 10.2196/59738

PMID: 40132192

PMCID: 11979531

Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.

Stakeholder consensus on an interdisciplinary terminology to enable development and uptake of medication adherence technologies across health systems: an online real-time Delphi study

  • Alexandra Lelia Dima; 
  • Urska Nabergoj Makovec; 
  • Janette Ribaut; 
  • Frederik Haupenthal; 
  • Pilar Barnestein-Fonseca; 
  • Catherine Goetzinger; 
  • Sean Patrick Grant; 
  • Cristina Jácome; 
  • Dins Smits; 
  • Ivana Tadic; 
  • Job van Boven; 
  • Ioanna Tsiligianni; 
  • Maria Teresa Herdeiro; 
  • Fátima Roque; 
  • European Network to Advance Best Practices and Technology on Medication AdherencE (ENABLE)

ABSTRACT

Background:

Technology-mediated medication adherence interventions have proven useful, yet implementation in clinical practice is low. The ENABLE COST Action (CA19132) online repository of medication adherence technologies (MATech) aims to provide an open access, searchable knowledge management platform to facilitate innovation and support medication adherence management across health systems. To provide a solid foundation for optimal use and collaboration, the repository requires a shared interdisciplinary terminology.

Objective:

We consulted stakeholders on their views and level of agreement on the terminology proposed to inform the ENABLE repository structure.

Methods:

A real-time online Delphi study was conducted with stakeholders from 39 countries, active in research, clinical practice, patient representation, policy making, and technology development. Participants rated terms and definitions of MATech and of 21 attribute clusters on product and provider information, medication adherence descriptors, and evaluation and implementation. Criteria of relevance, clarity and completeness were rated on 9-point scales, and free-text comments provided interactively. Participants had the possibility to reconsider their ratings based on real-time aggregated feedback and revisit the survey throughout the study period. We quantified agreement and process indicators for the complete sample and per stakeholder group, and performed content analysis on comments. Consensus was considered reached for ratings with disagreement index (DI) below 1. Median ratings guided decisions on whether attributes were considered mandatory, optional or not relevant. We used results to improve the terminology and repository structure.

Results:

Of 250 stakeholders invited, 117 rated the MATech definition, of which 83 rated all attributes. Consensus was reached for all items. The definition was considered appropriate and clear (median ratings 7.02 and 7.26, respectively). Most attributes were considered relevant and mandatory, and sufficiently clear to remain unchanged, except ISO certification (considered optional, median relevance rating 6.34), and medication adherence phase, medication adherence measurement, and medication adherence intervention (candidates for optional changes, median clarity ratings 6.07, 6.37, and 5.67, respectively). Subgroup analyses found several attribute clusters considered moderately clear by some stakeholder groups. Results were consistent across stakeholder groups and across time, yet response variation was found within some stakeholder groups for selected clusters, suggesting targets for further discussion. Comments highlighted issues for further debate and provided suggestions which informed modifications to improve comprehensiveness, relevance, and clarity.

Conclusions:

By reaching agreement on a comprehensive MATech terminology developed following state-of-the-art methodology, this study represents a key step in the ENABLE initiative to develop an information architecture that has the potential to structure and facilitate the development and implementation of MATech in health systems across Europe. The debates and challenges highlighted in stakeholders’ comments outline a potential roadmap for further development of the terminology and the ENABLE repository.


 Citation

Please cite as:

Dima AL, Nabergoj Makovec U, Ribaut J, Haupenthal F, Barnestein-Fonseca P, Goetzinger C, Grant SP, Jácome C, Smits D, Tadic I, van Boven J, Tsiligianni I, Herdeiro MT, Roque F, European Network to Advance Best Practices and Technology on Medication AdherencE (ENABLE)

Stakeholder Consensus on an Interdisciplinary Terminology to Enable the Development and Uptake of Medication Adherence Technologies Across Health Systems: Web-Based Real-Time Delphi Study

J Med Internet Res 2025;27:e59738

DOI: 10.2196/59738

PMID: 40132192

PMCID: 11979531

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