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. 2025 Dec 9;27:e81463. doi: 10.2196/81463

Table 2.

Cited examples of good patient engagement in digital health during the Stakeholder Expectations Matrix study and Patient Engagement Open Forum sessions.

Initiative Description
Data Saves Lives [17] A Europe-wide, multistakeholder initiative to raise wider patient and public awareness about the importance of health data, improving understanding of how it is used and establishing a trusted environment for multistakeholder dialogue about responsible use and good practices. This initiative includes the establishment of small pilot user advisory groups and patient advisory boards to provide feedback from the outset of a project or initiative and then grows with the program to educate throughout the process.
Patient Expert Center [18] A Belgium-based, patient-led initiative that designs processes with industry and the health care system to ensure that all companies have the same processes to interact with patients more systematically and solidly than in the past.
Canada’s Drug Agency [19] A Canadian national agency that involves patients in multiple aspects of their assessments of medical procedures, devices, and drugs. Canada’s Drug Agency signposts via their website the different ways in which patients can be involved in digital health.
IMI-Facilitate [20] A 4-year IMIa project to create a framework for clinical trial data to be returned to both clinical trial participants and their health care professionals.
The Public Engagement in Data Research Initiative [21] A UK-based initiative that collaborates to improve public engagement practices in data and statistics by coproducing projects and engagement tools with the public (eg, Good Practice Standards).
LupusGPT [22] A patient-driven, multilingual initiative, developed rapidly in a collaborative, multistakeholder process, with input from lupus patients, specialists, and industry partners. Regular updates continue to be incorporated based on user feedback, ensuring that the tool evolves to meet patient needs.
Parkinson’s UK Tech Guide [23] A patient group initiative designed to increase the number of people with Parkinson disease using appropriate devices and apps that can positively impact their quality of life. Key features include “lived experience” reviews and a dedicated group of individuals with Parkinson disease and family members guiding the project’s direction and ensuring accountability.
EDiHTA [24] A 4-year Horizon Europe project to create the first flexible, inclusive, validated, and ready-for-use European HTAb framework reaching TRLc 6-7, allowing the assessment of different digital health technologies (eg, telemedicine, mApps, and AId) at different TRLs, territorial levels (national, regional, and local), and perspectives (eg, payer, society, and hospital). All relevant stakeholders, including the patient community, will contribute to its design, development, and validation.

aIMI: Innovative Medicines Initiative.

bHTA: Health Technology Assessment.

cTRL: Technology Readiness Level.

dAI: artificial intelligence.