What does it feel like to hand over control and do participatory design research with the same participants for over two years? PhD student Peter Glick talks about his experience creating My Care Budget, a wiki to help people manage their Personal Health Budget (PHB) or care budget.
Participatory Design. Co-production. Co-design.
‘Go to’ words for research these days. They can be used to label a wide range of interactions, perhaps to describe a workshop where the participants participate, leave, never to be called on again. So how about when your participants continue to be involved with your research for over two years? When your participants decide when the next meeting should be and who should be invited? When your participants suggest an intervention and they then design, test, and promote it?
Welcome to www.mycarebudget.org. A wiki conceived, designed, structured and populated by the participants as part of my PhD project. It contains over 75 essential documents for running a care budget, especially those that are used to employ Personal Assistants or carers.
What is a Personal Health Budget?
A Personal Health Budget (PHB) or care budget allows people to manage their healthcare and support such as treatments, equipment and personal care. This means for example employing their own carers and personal assistants. However, for many people once they are given the budget, they don’t receive any guidance on how to spend it. They are left with the responsibility of employing people, writing staff contracts, and practically running a business. This can be a daunting task.
As described by one of the participants, My Care Budget is an “online peer support community platform that enables PHB users to share useful policies, documents and templates that have helped them manage their PHB for the benefit of other PHB users.” Launched in September 2021, it has over a thousand active users after just 6 weeks, predominantly in the UK but also Europe, US and Australia.
Playing a key role in the research
So how did the project’s participants come to play such a key role? Well one reason is they had a vested interest in the project. They were not passing through the research, instead, they were passionate about how it could help them to virtually mentor those newcomers to a life of care. They are not interested in my research per se, but are avid for its outcomes. I also see my role in this research as an active facilitator, in that I support and engineer the project and its engagements, I code, I project manage. I also prompt, cajole and act when I feel it’s time to act. I endeavour to be sensitive around the participants’ lives of 24/7 care, their priorities and to treat them as individuals - they might not have time to write the content for webpages, and they may have little interest in learning how to build a wiki, but they do want to help others.
Handing over control of my research
However. . . handing over control of ‘my’ research can be hard. After all, I’m the one putting in all the months of organising and writing, I know where I want the research to aim at. Allowing the project’s participants to dictate otherwise generated mixed emotions. For example, one meeting with the citizen participants and their healthcare authorities was especially key to me, as I saw it being an opportunity to hear the antagonism on both sides being vented, but the participants were adamant that I was not to seek consent from their authorities’ as “…if they knew we were taking notes and analysing what they were saying they would not say anything”. Of course, they were correct. Yes, I felt I lost valuable data, but the participants had experience of recording meetings and the authorities walking away when they found out.
In another example, I wanted the wiki to be completely open, so no one needed to register to download its content. The majority of the project’s participants disagreed, saying that it would devalue the content, so I created a registration process. Through handing control of the wiki to the participants, they gained a sense of ownership, as they could see their suggestions being incorporated into its design. Once launched, they were quick to spread the word about it, posting blogs that discussed it, wrote tweets about it, talked about it in meetings with their healthcare authorities.
So yes, I lost control with aspects of my research by handing it over to the participants, but I gained knowledge from them. They had experienced this domain of research in ways I never had and never would. I found myself trusting their views, the research turning in directions that I would not have planned by myself.
Addressing changes that matter
I’m hardly alone with this stance. Eminent authors such as Bødker & Kyng lament Participatory Design being used as a tool that begins and ends its deployment within a project (Bødker & Kyng, 2018), lacking consideration for sustainment of relationships after the research closes. They see its focus turned to the design process and the participation itself, rather than its original democratic consideration for the learning and empowerment of the worker/user.
The authors argue that Participatory Design “that matters should address changes that matter”, with the researchers as activists “working for a vision that they believe in, a vision of great importance to them, and of great importance to their partners”. This extends to their further concerns that Participatory Design is turning its back on groups immersed in conflict and tensions, resulting in a focus on outcomes formed out of co-creation, not a focus that “exposes differences and profound conflict”.
I’m with the authors on this. I have made a personal commitment to continue to offer the research’s artefacts such as www.mycarebudget.org past the end of the research. Hearing the participants’ stories of their struggles with authorities can be distressing, but it affirms that aspect of my own personal life and continues to drive me forward to make positive change, no matter how small, where I can.