Description of work
T7.1 – Methodology and indicators for measuring social integration (MDA Hellas, CERTH, AUTH, SHEBA) [M1-M12]
The goal of this task is to review the related literature and specify the methodology that will be used by WP7 to monitor the social integration of people with disabilities. The aim of this methodology will be to provide guidelines for specifying indicators with analytical and operational relevance to the measurement of social integration, as well as to describe how such measurements can be put in place. Our starting point will be the study presented in (Atkinson and Marlier, 2010) that deals with the general concepts and principles underlying the construction of social indicators. More specifically, in specifying our indicators we plan to adopt the suggested principal-based approach that determines the following: a) an indicator should identify the essence of the problem and have an agreed normative interpretation, b) an indicator should be robust and statistically validated, c) an indicator should be interpretable in an international context, d) an indicator should reflect the direction of change and be susceptible to revision as improved methods become available, and e) the measurement of an indicator should not impose too large a burden on the subjects. These principles will be applied for the case of people excluded due to their neuromuscular disability and with the intention to measure the impact of managing, authoring and sharing multimedia content.
Although the complete portfolio of indicators will be defined during the course of the project, we have already identified two different sources that are likely to provide us with valuable data. The first source relates to the users activity through social media and the importance of multimedia content in this process. As already mentioned Frohlich (Frohlich et al. 2002) verified the emotional payoff for users working with photographs in the creation of collages and described the importance of sharing as one of the main goals of taking pictures. Thus, it is reasonable to argue that social integration can be implicitly quantified by the activity of a person in social networks. In this direction, we will establish a number of indicators that can be automatically measured such as: number of on-line friends/connections/followers, number of posts, number of likes/comments/shares per post, indicators like “people talking about this (PTAT)” or the “engagement rate” (PTAT/likes), overall number of distinct users that liked/shared/commented on a post, expansion of the user’s social graph, etc. The second source relates to the patient’s digital productivity and the existence of links with any type of processes related to workforce. There are many cases (especially in the cohort of Parkinson disease) where patients continue their lives as active professionals regardless of their evolving disability. Despite the fact that they are excluded from a non-negligible number of activities, their good mental health allows them to retain some of their productivity. Another relevant case of disabled people contributing in productive processes is the creative groups organized by the care-giving organizations for producing goods (e.g., gift cards, calendars, etc) that are sold in the market for financial support. In such cases our approach to implicitly quantify social integration will be to monitor for any significant change in the overall throughput of the patient’s labour. However, in contrast to the case of social networks where the indicators can be measured automatically and subjectively, in this case our information source will be the subjective feedback provided by the patients.
T7.2 – Mechanisms for monitoring social integration (CERTH, MDA Hellas, AUTH, SHEBA, TU/e) [M13-M36]
Based on the indicators defined in T7.1, the goal of T7.2 is to make sure that the necessary mechanisms are in place for monitoring the anticipated change. Working along the already identified dimensions of digital life and digital productivity the activities of T7.2 consists of: a) documenting the full details about the social integration profile of every patient. These details will be initially obtained during the conduct of focus groups in the requirement analysis of WP6 and will be updated twice during the execution of the pilot studies; b) build up the necessary infrastructure for monitoring patients’ activity in social networks. In order to do this in an automatic manner, we will leverage CERTH’s experience on social media monitoring that has been gained through the EU-funded project SocialSensor[1]. As a result of this project, CERTH has already in place a sophisticated infrastructure for harvesting qualitative information from the social media stream. Next to this infrastructure, we plan to also rely on existing tools for social media monitoring like Topsy[2] (timeline, representative tweets, articles, mentions), SimplyMeasured[3] (most important followers), Mentionmapp[4] (network of mentions), LikeAlyzer[5] and Quintly[6] (Facebook page basic stats); c) formulate the questions and the structure of the interview sessions that will be conducted to acquire the information necessary for judging whether there has been any change in the productivity status of the patient. This activity will be performed with the significant contribution of MAMEM’s psychologists (TU/e) for helping the patients to feel comfortable and share information about their everyday activities. These interview sessions will take place after the completion of MAMEM’s first pilot study and will be repeated regularly.
T7.3 – Impact assessment on patient’s digital life and digital productivity (AUTH, MDA Hellas, SHEBA) [M24-M36]
The goal of T7.3 is to accumulate the collected evidence and produce a study about the social integration of people with disabilities as a result of gaining access to previously un-accessible computer interfaces. The study will mainly revolve around the paradigm of MAMEM where the eyes and mind of people who have lost their fine motor skills are provided with a new path to human-computer interaction and, consequently, a new path to society. Its intention will be to analyze the potential of bringing disabled people back to the society by means of managing and authoring multimedia content through natural human-computer interfaces.
[1] http://www.socialsensor.eu/