Preliminary findings of the consultations with the Local Community Groups and next steps
Last month, ALAMEDA held its second Engagement Coordination Team Meeting, as part of its WP7 activities. This was an important opportunity for us to share the outcomes of local engagement activities run so far at the level of pilot sites, discuss preliminary findings, and agree on next steps.
As anticipated three Local Community Groups have been constituted in Italy, Romania and Greece (read the previous news here), respectively including patients, caregivers and clinicians involved in the planning and delivery of care and rehabilitation services in three neurological disease domains of Multiple Sclerosis, Stroke and Parkinson’s diseases.
Among the topic discussed, the different consultation modalities and tools used in the three settings were described. While FISM (Italy) and SUUB (Romania) utilised individual interviews and focus groups as main methods, in Greece (NKUA) the team opted for using a remote and asynchronous feedback collection strategy (via email and online forms). Also, notable good practices have emerged e.g., in the selection of patients belonging to the Italian LCG where specific attention has been paid to gender balance as well as representativeness in terms of diversified personal profiles with different educational and professional background and family responsibilities.
The first iterations of the LCG engagement have been basically meant to gather the direct insights from their members on the questions to be asked via questionnaires with a view to pose stronger attention on symptoms and circumstances which, according to the experiential knowledge of patients with their conditions, may represent warning signs of potential worsening or relapse “red flags”. In addition, preferences in relation to the user-interface interaction modalities, length and frequency of measurements, or the willingness to allow the capture of face image during the interactions so as to make emotional sensing and analytics possible, have been collected.
So far, the work done to involve patients has been much appreciated. Importantly, all patients have shown trust toward the team they are working along with. The patients/caregivers are reportedly willing to provide feedback and being involved in research, still some doubt arose regarding their perception of the added value of their contribution which makes in some cases patients hesitant about the necessity of their engagement.
In this regard, several ECT participants agreed that it may be too early to perceive a real return of engagement as the project is not mature enough to report tangible results to the LCG members. However, as a follow up action, the participants agree that it will be crucial to keep the LCG members constantly informed about progresses and make them aware of how their inputs are concretely helping shape the system. Also, giving them the chance to access the prototypes and demos and test the devices although they won’t be among the patients recruited to take formally part to the study will be core to increase their comprehension and sense of utility.
Both in FISM and NKUA experience, the intermediation of the respective patient association has proven very valuable so far, both in ALAMEDA and other projects. SUUB is for the moment not connected to any association at local level, however the team is investigating the chance to connect with the national Romanian association.
In general, it is clearly emerging the importance of adapting the engagement approach to local context, use existing channels and networks that already effectively work for patients and they feel comfortable with to informally share their lived experiences, such as Facebook groups, Whatsapp chats and others.
Learn more about the ALAMEDA Local Community Group in your country and download the brochure here