INTRAS-IDES

Even though the activity is focused on people suffering from mental illness and cognitive impairment, IDES provides help and “guidelines” in the living lab sessions, but final decisions are ultimately taken by patients so as to ensure that they live the life they wish, taking into account that users’ capabilities are rather different according to the degree of impairment, which obviously is conditioning the degree of involvement.   IDES vision advocates that the best ideas come from involving people, and without the insights gained through the lived experiences, policy makers and professionals run the risk of developing costly services that do not meet the needs of those who will be using them.   Notwithstanding this, co-creation as a concept has fairly evolved along with different key projects implemented so far at IDES. In fact, two different periods may be distinguished. Thus, a first period (2007-2014) is characterized by the creation of a new stakeholders´ ecosystem. In this first stage, user was fairly considered a tester. The second period, which started in 2014 and is still on-going, strongly advocates participatory design and user co-creation. Different projects implemented throughout the period have helped gear this major shift (e.g CAPTAIN or MinD). Period 2019-2028 is set to evolve through an encompassing community-based approach, where co-creation is not focused merely on users, but on citizens.

This case study is not about digital transformation

Outstanding effort is being devoted to come up with metrics aimed at measuring contribution of users in co-creation processes and experiences. IDES do provide evaluation of sessions in terms of, for example, usefulness or satisfaction, but they lack systemic/overall evaluation tools. Furthermore, evaluation is very much anchored on qualitative (subjective) indicators that do not provide robust evidence for comparison (i.e. levels of satisfaction and/or empowerment), whereas quantitative indicators are not usually considered because they are not easy to obtain as co-creation deal with perceptions and people interactions. ROI type of impact measurement would be also quite necessary in terms of accountability, thus providing evidence that projects do work, which eventually may imply higher attention by the public sector and better project funding. Notwithstanding this, some specific and pioneering assessment methodologies are being developed in the context of specific projects where IDES is engaged (e.g., CAPTAIN, where a new protocol of cost-effectiveness indicators is being created). Finally, it should be mentioned that users´ level of engagement (recurrence) is also considered a way of measuring performance by IDES projects. As such, if users are keeping on attending subsequent co-creation sessions, this is a clear sign of good performance.

A major challenge is how effectively measure outcomes and impacts of IDES activity and how to gauge user co-creation according to the level of impairment. Furthermore, IDES living lab is at the centre of a vast ecosystem bridging healthcare service providers, research and technological centres, technology-based companies and users and the public sector, whereby a major challenge is how to arrange this ecosystem in a meaningful and useful way to achieve IDES goals. In that sense, IDES role as a “network/linking infrastructure” is paramount.  

This “user co-creation” based framework is is set to evolve through an encompassing community-based approach, where co-creation is not focused merely on users, but on citizens. As such, according to this scenario, co-creation is far from being a “niche” concept intended to be operated by users to become the centre of many citizenry-based settings. That is, it will imply using co-creation as the raison d’etre of providing participatory solutions where the citizen (and not the user) is the ultimate protagonist. As it may be noticed, this is to be a major shift at IDES activity in the future, since co-creation practices are meant to be somewhat different and the role of the different stakeholders would need to be accordingly adapted. In this sense, IDES is working on evolving the concept of living lab into “impact hubs” that will combine innovation deployment with the introduction of further levels of citizen´s participatory models to build upon the very concept of community (instead of “group”).

The motto of IDES is “nothing about us without us”. Involving users in a participatory process creates commitment, empowerment and appropriateness, thus making up a “convincing case”, a “service ambassador” and an incentive against sceptical people. Massive collaboration and participation are in the DNA of IDES, as “cross-fertilisation” is a major driver of success (i.e., more than 2,000 people of different nationalities do collaborate in different initiatives put forward by INTRAS-IDES). Heavy involvement in different projects (some of them European-based, such as CAPTAIN, MIND or PROCURA) has enabled the deployment of innovative and pioneering methodologies & technologies spurring co-creation.

Co-creation unleashed by IDES Living Lab activity allows the achievement of higher levels of trust, self-empowerment, self-autonomy or perception of identity on the user side. Furthermore, public value is also created by improving social engagement (with other patients, staff, family and friends) and community building.