Beyond the desire to develop a prototype for a personalised AI healthcare support system direct at PMSS patients, ALAMEDA also builds upon the previous experience gathered in the MULTI-ACT project in order to develop new paths of participatory and anticipatory governance in brain health research.
In particular, ALAMEDA recognises the centrality of the experiential knowledge of the patients in the design of its innovative disease assessment interventions and the selection of the most suitable technological solutions. In the same direction, the project also seeks to innovate medical protocols by introducing a shared decision-making model between medical professionals, patients and caregivers (understood as the primary end-users and main potential beneficiaries of the technology).
So, how do we plan to gather, listen to and empower patients’ voice?
ALAMEDA will model its patient engagement approach around the principles and guidelines settled by the H2020 MULTI-ACT project.
Specifically, last 7th of September 2021, the ALAMEDA consortium has officially kicked off the activities of its Engagement Coordination Team (ECT) through an ad-hoc meeting with patient representatives of the three diseases under study (Parkinson’s, Multiple Sclerosis and Stroke – PMSS).
The MULTI-ACT Patient Engagement Guidelines recommend establishing an Engagement Coordination Team (ECT) as the first step in their implementation. The ECT is meant to be a neutral body responsible for the design and implementation of the patient engagement strategy, in charge of creating commitment and moderating the dialogue between interdisciplinary and different (sometimes competing) voices.
The ECT composition depends on the specificity of individual programs and/or projects. However, regardless the configuration, patients are key parts and co-chairs of the team and ensure representativeness of their respective communities. If you wish to learn more about MULTI-ACT and experiment using the guidelines and the toolbox, click here
The activities of the ECT are implemented under the experienced coordination of the Italian Multiple Sclerosis Foundation (FISM) who moderated the kick off meeting attended by three patient representatives and three clinicians respectively covering the three areas of disease-specific expertise along with the project coordinator (ICCS), one of the technological partners (WCS) and the dissemination and stakeholder engagement manager (WISE).
During the course of the online event, the participants have been provided with an in-depth introduction of the project’s goals, ambitions and general stakeholder engagement principles as well as the explanation of the MULTI-ACT Patient Engagement Roadmap.
The patient representatives were introduced to all research stages in which they could practically develop their contribution (design & plan, research execution, evaluation and translation to community) and were requested to reflect about their expectations towards the project’s outcomes and the aspects of the research they feel they will be more likely able and feel comfortable to meaningfully contribute.
The next step will consist in the constitution of three Local Community Groups in the respective countries where ALAMEDA pilots are taking place i.e., Italy (Multiple Sclerosis), Greece (Parkinson’s disease) and Romania (Stroke). Such groups composed by 9-12 end users and animated by the respective patients and clinicians sitting in the ECT will secure engagement at national and disease-specific level and provide valuable feedback as the research work progress.
We look forward to continuing the development of our participatory approach in order to feed ALAMEDA with innovative strategies connected to AI healthcare and the implementation of wearable and ambient sensors which must not be invasive to the life of the patient. Understanding individual preferences and priorities, jointly with developing a methodology for shared decision-making between health professional and patients is a fundamental cornerstone in the development of new technological solutions. The ALAMEDA project absolutely wants a central role in all of this!