Design, implementation and usability analysis of patient empowerment in ADLIFE project via patient reported outcome measures and shared decision making

This paper outlines the design, implementation, and usability study results of the patient empowerment process for chronic disease management, using Patient Reported Outcome Measurements and Shared Decision-Making Processes. The ADLIFE project aims to develop innovative, digital health solutions to...

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Published in:	BMC medical informatics and decision making Vol. 24; no. 1; pp. 185 - 21
Main Authors:	Erturkmen, Gokce B Laleci, Juul, Natassia Kamilla, Redondo, Irati Erreguerena, Gil, Ana Ortega, Berastegui, Dolores Verdoy, de Manuel, Esteban, Yuksel, Mustafa, Sarigul, Bunyamin, Yilmaz, Gokhan, Choi Keung, Sarah N L I M, Arvanitis, Theodoros N, Syse, Thea Damkjaer, Bloemeke-Cammin, Janika, Kaye, Rachelle, Sorknæs, Anne Dichmann
Format:	Journal Article
Language:	English
Published:	England BioMed Central 28-06-2024 BMC
Subjects:	Chronic conditions Chronic Disease - therapy Chronic Disease Management Chronic illnesses Chronic obstructive pulmonary disease Clinical decision making Congestive heart failure Customization Decision Aids Decision making Decision Making, Shared Design Empowerment Feedback Health care Heart diseases Humans Interoperability Lung diseases Multimedia Patient Empowerment Platform Patient Participation Patient Reported Outcome Measures Patients Pilot projects Project management Shared Decision Making User satisfaction Denmark Sweden Israel United Kingdom > UK Germany Shared Decision Making Decision Aids Patient Empowerment Platform Interoperability Chronic Disease Management Patient Reported Outcome Measures
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Summary:	This paper outlines the design, implementation, and usability study results of the patient empowerment process for chronic disease management, using Patient Reported Outcome Measurements and Shared Decision-Making Processes. The ADLIFE project aims to develop innovative, digital health solutions to support personalized, integrated care for patients with severe long-term conditions such as Chronic Obstructive Pulmonary Disease, and/or Chronic Heart Failure. Successful long-term management of patients with chronic conditions requires active patient self-management and a proactive involvement of patients in their healthcare and treatment. This calls for a patient-provider partnership within an integrated system of collaborative care, supporting self-management, shared-decision making, collection of patient reported outcome measures, education, and follow-up. ADLIFE follows an outcome-based and patient-centered approach where PROMs represent an especially valuable tool to evaluate the outcomes of the care delivered. We have selected 11 standardized PROMs for evaluating the most recent patients' clinical context, enabling the decision-making process, and personalized care planning. The ADLIFE project implements the "SHARE approach' for enabling shared decision-making via two digital platforms for healthcare professionals and patients. We have successfully integrated PROMs and shared decision-making processes into our digital toolbox, based on an international interoperability standard, namely HL7 FHIR. A usability study was conducted with 3 clinical sites with 20 users in total to gather feedback and to subsequently prioritize updates to the ADLIFE toolbox. User satisfaction is measured in the QUIS7 questionnaire on a 9-point scale in the following aspects: overall reaction, screen, terminology and tool feedback, learning, multimedia, training material and system capabilities. With all the average scores above 6 in all categories, most respondents have a positive reaction to the ADLIFE PEP platform and find it easy to use. We have identified shortcomings and have prioritized updates to the platform before clinical pilot studies are initiated. Having finalized design, implementation, and pre-deployment usability studies, and updated the tool based on further feedback, our patient empowerment mechanisms enabled via PROMs and shared decision-making processes are ready to be piloted in clinal settings. Clinical studies will be conducted based at six healthcare settings across Spain, UK, Germany, Denmark, and Israel.
Bibliography:	ObjectType-Article-1 SourceType-Scholarly Journals-1 ObjectType-Feature-2 content type line 23
ISSN:	1472-6947 1472-6947
DOI:	10.1186/s12911-024-02588-y