PILOT STORY: An evaluation panel of informal caregivers

The German funding organisation VDI/VDE-IT is piloting a citizen panel of informal caregivers. The panel will contribute in the evaluation process of a new funding instrument, especially assessing what sort of interactive technologies that would support them in their roles as caregivers. We present some of their first learnings.

2021 was a busy year for the research funding organisations (RFOs) of PRO-Ethics. As the second wave of pilot projects kicked off, each RFO has devoted much time to the design of the pilots. Some participatory processes have also been initiated.

While knowledge was shared between projects partners as part of these processes, the bulk of the work really driving the development of the different pilots was happening internally in the RFOs.

Plenty of insights have continuously formed these processes. Some of these may be seen as intermediate steps or smaller challenges that would be downplayed or forgotten in official documents or thematic cross-learning sessions, due to their seemingly minor importance, despite the learnings they may bring to others.

To better represent and learn from such tacit knowledge, one aspect of PRO-Ethics, the so called ‘pilot-stories’, have the RFOs tell tales from behind the scenes on a recurring basis, offering a peek into how the pilots develop practically and over time.

These stories are fully available to all the project partners and support cross-learning activities and ultimately the ethics framework. Some of the stories will also be shared online with the wider public.

Establishing a panel of caregivers
The first of these stories to be published stems from VDI/VDE-IT. In the last year, the team has kept busy designing a programme in the form of a panel of informal caregivers. The panel members will be able to chime in and evaluate a new funding incentive based on their own experiences, especially concentrating on what sort of interactive technologies that would support them in their roles as caregivers.

Here, we present a short snippet of their first pilot story, detailing how they faced the challenges of establishing their panel. We jump in right after the decision to establish the panel was agreed on by a group of experts, who had participated in a number of workshop on the topic of how to increase participation in their programmes.

What followed was a rigorous planning process to realize this panel. We created an initial set of criteria in order to guarantee a diverse selection of citizen panel members. This initial set was based on demographics, location and the personal caregiving-situation. We also created an application form that applicants could fill out online. The next step was to contact multipliers, such as caregiving organizations, to pitch them our ideas, and at the same time ask them for feedback.

We faced a multitude of challenges up until this point. For one, we were not sure what the best recruiting channels were to reach those people that have an interest in our undertaking. Further, it is often difficult to reach out to “vulnerable“ groups such as informal caregivers, as they could be hindered by different restrictions or obstacles (e.g. time and energy restrictions due to their care work, involvement in complex bureaucratic processes, bad experiences with authorities, etc.). It was important to limit these obstacles as much as possible. The multiplier meeting helped us in that regard.

After incorporating the feedback, we started the application phase. We received around 40 applications, of which 15 were selected as permanent members of the citizen panel. Four were selected as substitute candidates. The challenge here was to select a representative group that incorporated different backgrounds, whilst at the same time showing a range of care situations. The diversity of people and the limitation of panel seats made selection quite difficult. We could see from the applications that applicants were very eager to share their stories, and it was a great joy for people to be selected and being able to participate in the panel, so that their voices could be heard.

The first get-together with the citizen panel took place late August. Panel members were able to share their stories and talk about their motivations behind joining the citizen panel. One could tell that the members were very engaged in talking about their experiences and needs. We were able to collect many views and ideas and are hoping to use this information in the future for evaluation purposes.

Illustration: PRO-Ethics/Plott

Published: 23.03.2022