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Interview with Mia Nelson from the University of Edinburgh 12 Sep 2017

Today we talk with Mia about her involvement in the ROADMAP project. Mia is a post-doctoral research fellow and is currently involved in two separate research studies at the University of Edinburgh examining different aspects of dementia and Alzheimer’s disease – ROADMAP and the Thistledown project.  Outside the university Mia is co-leading a 3-year project undertaking an independent evaluation of a Hospice-at-Home service. Mia has an interdisciplinary background in psychology, health promotion, nursing and midwifery.  She is also a member of the Edinburgh Centre for Research on the Experience of Dementia (ECRED).

What is your aim in ROADMAP?

My work with ROADMAP is about trying to unpick which outcomes are most important and most helpful in understanding Alzheimer’s disease (AD) progression. What we know today is that there are hundreds of different outcomes that we could use, but we need to work out what the core group of outcomes should be, the so called “priority set of outcomes”.

Therefore, the ROADMAP team are currently designing a survey to be conducted with different stakeholder groups. Using the survey, ROADMAP wants to assess the view of each group on what the core outcomes should be. The results from the surveys of the different stakeholder groups will be drawn together, compared and combined to get a core set that we can use from real-world data (RWD). The stakeholder groups include people who have been diagnosed with AD, carers and family members  as well as a whole range of different professions who are working in AD (research, drug development, healthcare policy makers but also health economists and ethicists…).

You and your colleague took part in a consultation with Alzheimer Europe’s European Working Group of People with Dementia (EWGPWD) during the last two days. What were the most important topics you wanted to cover and why?

This is the focus of my work with ROADMAP.  The aim in this consultation was to gain insights into the members’ own lived experiences, in order to be able to apply that to our interpretation of the survey results. The key idea of the work today revolved around understanding the experience of having dementia and how people understand whether or not their disease is progressing. Getting this context is important to us in order to be able to understand the nuances behind the results when we get our survey data back. For us this meant learning from both the members of the EWGPWD and the carers that came with them.  We will also run a similar consultation with members of ROADMAP who are working in AD.

What value do you see in collaborating with the EWGPWD to help shape and critically reflect the research process?

So there’s two different levels to answering that.  My perspective, across the board with any health research, is that you can’t design a study about a disease if you don’t understand it. The people who live with it have a particularly important understanding and there is a great value in bringing them in at a ground level in a project like ROADMAP. It is such an important part of design and interpretation to get the people who are affected to contribute, so you are actually doing something that’s worthwhile and meaningful to the people that you’re hoping to help.

Having actually been here now, specifically working with the EWGPWD itself has been amazing. There is such a good collaboration between the group members themselves and with us.  They are an amazingly dynamic group, the like of which I haven’t worked with before. They have made such valuable contributions and came with such a willingness to share and work with us. It’s been an absolute pleasure and I can’t imagine what it would be like to try and do this without their input and guidance.

Do you have a personal take-home message based on your experiences of these two days you would like to share with us?

I think there were certain things that are particularly important that I want to keep in mind. One message was remembering the individual differences within the group. We’re trying to pare  the number of outcomes down and reach consensus on what the core group of outcomes should be. So one message that was particularly clear was “yes, that’s good and that’s useful”, but “never forget the individual and the individual differences, everyone’s experience is different”. I think making sure that we keep that in our overall view of this kind of shortened list is important.

The other message was about defining and categorising stages of AD.  The group explained really well the ways in which staging AD is and is not helpful.  The conversations have allowed me to understand some experiences that are clearly very important for carers and people living with dementia and these highlighted the usefulness and limitations of what we are trying to achieve.

What do you find most exciting about the ROADMAP project?

In my personal opinion it is the international cooperation. I find it amazing that there are so many people working hard on this project investing energy and effort. We’ve seen across the board that there is so much willingness to make this happen. Everyone in ROADMAP can see how important it is and everyone’s willing to work together.  Another aspect is the goal to have something that is accessible across the borders, across Europe as a whole, for the good of people with AD. That’s really at the centre of all of it.

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