In order to showcase the work we do in Pattern-Cog, European project funded by ERA PerMed, we caught up with Soraya Moradi Bachiller, Project Officer at Alzheimer Europe, and asked her a few questions about her work, expectations and challenges.
- Tell us a bit about you and the institution you work for.
When I was at the university studying for my degree in biochemistry, I always had the feeling of being a sponge. I wanted to absorb all the knowledge around me and explore every research field I could, even the ones I thought I wouldn’t like. That’s the only way of discovering what you like and what you don’t, isn’t it?
I was lucky enough to have the opportunity to gain a bit of experience in several research fields during my degree and my masters’ studies, such as network science, neuroscience, population genetics, heart failure and cardiac hypertrophy. But there was nothing to do…the brain was, and still is, the most beautiful and fascinating thing I have ever seen and studied. I wanted to know more about it and decided to do a Ph.D. in the field of neuroscience and small extracellular vesicles.
And I learned a lot, but the most important thing for me was that my Ph.D. supervisor gave me, from the very beginning, the independence and freedom that I needed to make mistakes so that I could learn, and taught me how valuable are the skills all the students gain during their Ph.D. to get whatever job they wish outside academia.
He is, indeed, the reason why I started to become more and more familiar with and interested in Alzheimer Europe and the fantastic work that all my colleagues do. For a year now, I have been part of this family and umbrella organisation of 41 national Alzheimer’s associations from more than 30 countries. At Alzheimer Europe, we work to make dementia a European priority, provide people with dementia and their supporters a voice, and improve their lives by changing perceptions, combating stigma and supporting dementia research. With my colleagues Dianne Gove, Ana Diaz and Daphné Lamirel, I contribute towards different research projects in the context of Public Involvement, and support the members of the European Working Group of People with Dementia, the European Dementia Carers Working Group and other advisory boards in several Alzheimer Europe’s activities and work.
- What is the focus of your work within the Pattern-Cog project?
The focus of my work within the Pattern-Cog project builds on the inspiring work that my colleagues Dianne Gove and Ana Diaz have done for more than 10 years in the context of Public Involvement in several research projects.
Public Involvement is about the active involvement of members of the public in research, other than as research participants. This involvement means working together with researchers and sharing their perspectives, experiences, needs, priorities, and concerns about the research project, its topic, and how the project is designed and will be conducted. Public Involvement is a democratic principle and it enables researchers to make their research more relevant and adapted to people living with the particular condition or disease under study.
The Pattern-Cog advisory board involved in this research project is composed of the members of the European Dementia Carers Working Group, which was launched by Alzheimer Europe in 2022. This group is currently composed of carers and supporters of people with dementia or people with prior experience in caring, with no known signs or symptoms of cognitive impairment. All of them will be involved throughout the project in different face-to-face and online consultations, where we will discuss different topics of relevance for the Pattern-Cog research team, such as the social implications of predicting the risk status in cognitively healthy people, the use of machine learning in prediction tools, or how to disclose risk for cognitive impairment to people with no known cognitive problems.
- What do you enjoy the most about your work on the Pattern-Cog project? What do you find most challenging?
There are two things that I particularly enjoy about the Pattern-Cog project. The first one is my work on this project, the Public Involvement activities with the Pattern-Cog advisory board.
We had our first face-to-face consultation in March, and their willingness to be involved in this project and give feedback on different topics was absolutely fantastic. I feel privileged for having the possibility of involving them in the Pattern-Cog project. The consultations with them, with the European Working Group of People with Dementia and with other advisory boards I work with, are, for me, the best part of my job.
The second thing I enjoy is also the one I find the most challenging. The Pattern-Cog project involves a multidisciplinary team of people with different expertise, all of them working towards the same goal. Being able to work, all together, towards this goal is exciting, and making it work is challenging but, at the same time, necessary to make significant and meaningful progress in the field of ageing and neurodegeneration.
- What are your expectations and what do you think is the importance of the project for the wider field?
I think the Pattern-Cog project is very relevant in the fields of brain ageing and dementia research for two main reasons.
The first one is that this project adds something new to what we are used to in dementia research. Pattern-Cog focuses on predicting the risk of developing cognitive impairment in cognitively healthy people rather than on predicting the conversion from mild cognitive impairment to dementia. This is incredibly important when it comes to the development of new therapies, treatments and interventions from which more people can benefit.
The second thing is that this project brings together a team of experts in different fields of research and also in Public Involvement. I believe that combining all this expertise and knowledge is the only way of approaching complex problems like neurodegenerative diseases leading to dementia. I also think that, in the next few years, we will probably hear more and more about risk for cognitive impairment, not only when recruiting participants for a clinical trial, but also in hospitals or at the doctor’s practice. If we want risk prediction tools to succeed in a clinical setting, we need to understand and acknowledge what people expect, and what their concerns are, from risk prediction tools and doctors using them, and this can only be possible when integrating Public Involvement in research projects like Pattern-Cog.
