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Developing a medication adherence technologies repository: proposed structure and protocol for an online real-time Delphi study

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AuthorsUrska Nabergoj MakovecCatherine GoetzingerJanette RibautPilar Barnestein-FonsecaFrederik HaupenthalMaria Teresa HerdeiroSean Patrick GrantCristina JácomeFatima RoqueDins SmitsIvana TadicAlexandra L. Dima
Year2022
VenueBMJ Open
Item typeJournal Article

Introduction An online interactive repository of available medication adherence technologies may facilitate their selection and adoption by different stakeholders. Developing a repository is among the main objectives of the European Network to Advance Best practices and technoLogy on medication adherencE (ENABLE) COST Action (CA19132). However, meeting the needs of diverse stakeholders requires careful consideration of the repository structure. Methods and analysis A real-time online Delphi study by stakeholders from 39 countries with research, practice, policy, patient representation and technology development backgrounds will be conducted. Eleven ENABLE members from 9 European countries formed an interdisciplinary steering committee to develop the repository structure, prepare study protocol and perform it. Definitions of medication adherence technologies and their attributes were developed iteratively through literature review, discussions within the steering committee and ENABLE Action members, following ontology development recommendations. Three domains ( product and provider information (D1), medication adherence descriptors (D2) and evaluation and implementation (D3 )) branching in 13 attribute groups are proposed: product and provider information, target use scenarios, target health conditions, medication regimen, medication adherence management components, monitoring/measurement methods and targets, intervention modes of delivery, target behaviour determinants, behaviour change techniques, intervention providers, intervention settings, quality indicators and implementation indicators . Stakeholders will evaluate the proposed definition and attributes’ relevance, clarity and completeness and have multiple opportunities to reconsider their evaluations based on aggregated feedback in real-time. Data collection will stop when the predetermined response rate will be achieved. We will quantify agreement and perform analyses of process indicators on the whole sample and per stakeholder group. Ethics and dissemination Ethical approval for the COST ENABLE activities was granted by the Malaga Regional Research Ethics Committee. The Delphi protocol was considered compliant regarding data protection and security by the Data Protection Officer from University of Basel. Findings from the Delphi study will form the basis for the ENABLE repository structure and related activities.

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AuthorsAlexandra Lelia DimaUrska Nabergoj MakovecJanette RibautFrederik HaupenthalPilar Barnestein-FonsecaCatherine GoetzingerSean GrantCristina JácomeDins SmitsIvana TadicJob van BovenIoanna TsiligianniMaria Teresa HerdeiroFátima RoqueEuropean Network to Advance Best Practices and Technology on Medication Adherence (ENABLE)
Year2025
VenueJournal of Medical Internet Research
Item typeJournal Article

Background: Technology-mediated medication adherence interventions have proven useful, yet implementation in clinical practice is low. The European Network to Advance Best Practices and Technology on Medication Adherence (ENABLE) European Cooperation in Science and Technology Action (CA19132) online repository of medication adherence technologies (MATechs) 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 with the terminology proposed to inform the ENABLE repository structure. Methods: A real-time web-based 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. Relevance, clarity, and completeness criteria were rated on 9-point scales, and free-text comments were provided interactively. Participants could 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 a disagreement index of <1. Median ratings guided decisions on whether attributes were considered mandatory, optional, or not relevant. We used the results to improve the terminology and repository structure. Results: Of 250 stakeholders invited, 117 (46.8%) rated the MATech definition, of whom 83 (70.9%) rated all attributes. Consensus was reached for all items. The definition was considered appropriate and clear (median ratings 7.02, IPR 6.10-7.69, and 7.26, IPR 6.73-7.90, respectively). Most attributes were considered relevant, mandatory, and sufficiently clear to remain unchanged except for ISO certification (considered optional; median relevance rating 6.34, IPR 5.50-7.24) and medication adherence phase, medication adherence measurement, and medication adherence intervention (candidates for optional changes; median clarity ratings 6.07, IPR 4.86-7.17; 6.37, IPR 4.80-6.67; and 5.67, IPR 4.66-6.61, respectively). Subgroup analyses found several attribute clusters considered moderately clear by some stakeholder groups. Results were consistent across stakeholder groups and 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 informing 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 capable of structuring and facilitating the development and implementation of MATech across Europe. The debates and challenges highlighted in stakeholders’ comments outline a potential road map for further development of the terminology and the ENABLE repository.

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