RADAR-AD researcher Sébastien Libert shares findings from ethics interviews with members of the PAB

Earlier this year Federica Lucivero and Sébastien Libert from University of Oxford conducted interviews on ethical and social perspectives towards the research done in RADAR-AD (read our news story about it here). Sébastien Libert talks about the highlights of their research, the significance and main findings from these interviews and elaborates on the impact of the COVID-19 crisis on this part of the research for RADAR-AD.

What is the focus of your work within the RADAR-AD project?
My work is focused on exploring social and ethical challenges that would potentially appear in the implementation of the RADAR-AD study. The idea is to explore the perspective of potential participants in the research. Most importantly, in February myself and Federica Lucivero from Oxford University conducted interviews with RADAR-AD’s Patient Advisory Board (PAB) members and asked them about the specific challenges that they foresee for people with dementia that would be included in the study. In this sense, the nature of my work is anticipatory to the actual implementation of the project. Furthermore, we communicated the results from the interviews we held so far through a report which we sent to the rest of the consortium. My specific task in this was to develop this report and share it with other project members. In fact, we are currently undergoing a review process for this report wherein other researchers working on the project provide comments and feedback on our results and findings.

What are the highlights of the research you are doing?
There are multiple highlights but I would emphasize the questions on data collection and privacy, discussions on well-being of future participants in this sort of research, the type of conditions that participants are comfortable with in terms of Remote Measuring Technologies (RMTs) and the general use of those. Another discussion point to be highlighted is what participants felt was respecting their privacy and what aspects were adequate to be measured in their daily lives.

What are the main findings from the interviews held with patients in February?
They concern, for instance, the complexity that comes with privacy issues, such as how we can anticipate privacy and what aspects of life are important to be kept private. For example, from our interviews it became apparent that participants had an expectation of privacy and they put a lot of trust into the researchers’ use of their data. It is important for investigators in this type of research using RMTs to maintain a dialogue with the participants in order to understand in which instances privacy must be protected and how they can achieve this in an anticipatory manner prior to the start of the research. What also came out of the interviews is that people with conditions such as Alzheimer’s disease and dementia put a lot of hope in this type of research. They have a wish for the research to bring a positive improvement in their lives but also in the lives of all people with dementia as a whole. There is also a worry that emerges out of it – worry to fail the research on the side of participation. In that sense, participants want to do their best in this type of research. For instance, they worry that they will not be able to use the RMTs properly, or that they would not be able to fit in the requirements of the research. That is to say, these concerns are not especially and directly connected to the research but relate to the expectations of participants before the research would even take place. It is therefore of great significance for researchers that they identify these points of worry and provide explanations to potential participants in the study in order to respect their well-being and reassure them in terms of their worries.

What is the significance of your findings from these interviews for RADAR-AD as a whole?
What is significant for these kind of findings and other work on Alzheimer’s disease is to communicate findings to other researchers and make them an object for discussion. Topics such as the complexity of privacy issues or ethical concerns will span over the lifetime of the project. We therefore need to maintain them as an object of discussion for the consortium during the duration of the project. After that it is all about everyone coming to find solutions together.

What do you enjoy the most about your work on the project?
What I enjoy the most is to discover the perspective of the main beneficiaries of this type of research – people with dementia, their carers and families – and to be able to have a discussion with them, understand their expectations, feelings and thoughts about the research. Directly in relation to that is to be able to establish bridges between the perspectives of the participants and the researchers on the other hand. In this way researchers will always be aware that their research is very much part of the daily life of people and will be able to address people’s concerns directly.

What is challenging about your work?
The main challenge is that there are many actors involved in parallel and they have their own perspectives and disciplinary background. The chief purpose of my work is therefore to establish open communication, circulate concepts and ideas about participants perspectives, expectations and challenges among these different parties involved.

What do you think is the importance of the project for the wider field of Alzheimer research?
What is important with these kind of projects is that they really keep Alzheimer’s disease and dementia as a major focus of research and as a societal discussion. It is also significant to recognize that these conditions have an impact that is very important to people’s life, the lives of their carers and their family. This kind of research can help people with Alzheimer’s and dementia to, ultimately, better understand their condition, how their life is being changed and to also evolve with the condition. It is crucial for us to aim at finding ways to address their concerns and difficulties.

How has the COVID-19 crisis impacted your work?
The main impact is that most of us had to set up alternative arrangements with our workplace. I was lucky to be able to continue working from home. Federica and I had conducted most of our interviews prior to the lockdown and were able to obtain our data. Therefore, the work we have been doing during the lockdown is more analytical and has to do with reviewing interviews. In that sense, we can easily do this work remotely. However, we didn’t have as much contact with the research community as we wanted to. The type of contact became more framed in online interactions, which don’t allow the same type of exchange and depth to specific issues of research.

How have you adapted to the new circumstances created by the pandemic?
I personally try to establish a routine around my work – I maintain a daily routine and keep enjoyable activities outside of my work. Similar to many people working at home, I assume. We have also maintained weekly meetings with Federica on our work for RADAR-AD as to discuss important aspects of our analysis on the interviews. Moreover, we use online tools to be able to do this work. Importantly, we gathered valuable comments on our report on the interviews. So far, it is satisfying in terms of fulfilling the requirements for our work and we will be able to disseminate the final findings from the interviews, which is good news!