At the beginning of September 2023, I attended the conference “Mensch und Computer” (MuC) in Rapperswil (Switzerland). MuC is the largest conference series on human-computer interaction in Europe. The conference is organised by the German Informatics Society and German UPA (professional association of German usability and user experience professionals). If I remember correctly, MuC was the first conference I ever attended and that was 2009. The last one I attended was 2014, so I was quite curious whether I meet some old acquaintances.
One of the best things at conferences is the pre-conference programme and especially workshops. I really like these, because they are usually interactive and it’s much easier to meet new people and exchange ideas. I was happy, that we got accepted with our position paper to the workshop on participatory and socially responsible technology development. The aim of the workshop was to foster the discussion around the question: To what extent does user participation lead to socially responsible technology development? People interested in joining the workshop were invited to submit a position paper in which they reflect on their experiences in participatory design and on questions:
- What was the structure of participation and the relationships of interests in the project? What criteria were used to select users? Were gender and diversity aspects taken into account?
- What was the research and development process like? Who was involved in which knowledge and decision-making processes? How much influence or decision-making power did the users have?
- What methods were used? How did they influence, enable or prevent participation and influence?
- How are the process and the project evaluated with regard to the demands of participatory design and ultimately with regard to their contribution to socially responsible technology?
In our position paper, we reflected on the end-users and stakeholders that were engaged in several different activities in the RE-SAMPLE project (for example, user needs and requirements elicitation, testing of technology, creating the new service model) using different methods (for instance, interviews, surveys, workshop) and formats (online, in person, by phone). We are very grateful for the time that people with COPD and healthcare professionals took, to share their insights and perspective, on which many decisions were based.
Together with other researchers in the workshop, we reflected on how we could improve the level of participation of end-users and stakeholders. Given the workload of healthcare professionals and the disease burden of people living with COPD, we have to balance the level of involvement (i.e., sharing power, decisions and responsibilities) with the burden that comes with participation. Given the challenges to recruit people, we often needed to take what we get. However, the people who volunteered might not be representative of the whole population of people living with COPD. An ongoing challenge therefore is to reach people who are difficult to reach, to also include their perspective when developing the RE-SAMPLE virtual companion.
As we conclude in our position paper: Our goal is to continuously find ways to reach all people that are affected by the technology under development and that are representative of the population – in all of our projects. Building good relationships with stakeholders and involving them already when writing a grant proposal can help to shape the project in a way that addresses their needs and kick-start outreach activities early on. Furthermore, we believe that delivering first and asking later (e.g., by continuously sharing activities and results from ongoing studies in an accessible way) is a good way to show our commitment to stakeholder involvement. In RE-SAMPLE, we share summaries of the studies to all our participants both as text and as a short video.
We also share these clips with patient associations and on social media. We hope that these can also illustrate what we mean by participation, and potentially lower the barriers for people with COPD who have never participated in a research study.
Our position paper
You can read the position paper here:
Grünloh, Christiane; Hurmuz, Marian; te Braake, Eline; Jansen-Kosterink, Stephanie (2023): End-user and stakeholder participation in the European eHealth project RE-SAMPLE. Mensch und Computer 2023 – Workshopband. DOI: https://doi.org/10.18420/muc2023-mci-ws02-436. GI. MCI-WS02: Partizipative und sozialverantwortliche Technikentwicklung. Rapperswil. 3.-6. September 2023