Interview with Dr. Laura Blauth about her work in music therapy trials for dementia
In this interview series that was originally published on the Patient Blog of our ClinLife® Clinical Trial Portal, we give patients and the public an insight in the world of clinical trials through the eyes of the scientists who design and implement clinical trials. We speak with individual researchers, trial managers and organizers about their work, how did they got involved in clinical research and what drives them in their day to day work. This way, we inform our over 15 million yearly visitors and 1.3+ million registered users about clinical trials and show the human-face of clinical research and build trust and understanding. Visit our ClinLife® Patient Blog here.
Dr. Laura Blauth, the clinical trial manager for a Music Therapy Study for Alzheimer.
In this interview Dr. Laura Blauth, music therapist and clinical trial manager in Würzburg (Hochschule für angewandte Wissenschaften Würzburg-Schweinfurt) tells about her work and music therapy trial for dementia.
It was during my study in music and philosophy (Berlin) that I became interested in the therapeutic effects that music has on people. After I graduated, I moved to the United Kingdom to do a specific MA training to be able to work as a music therapist. During my work as a music therapist I noticed more specific positive effects of music therapy, for instance that it helps people feel better and improves the quality of their lives by improving their ability to communicate and connect with other people.
To study these positive effects further, I began working as a clinical music therapist in clinical trials. This way I was able to get a better idea of how clinical trials work from a therapist perspective but also how it is for patients to participate, what they need, and where problems can occur.
When I was appointed as the clinical trial manager of a new study, my previous experiences allowed me to better understand the way the study takes place and improve the processes. Ultimately, it is my research goal to find out with this study if and how specific music therapy interventions help to support people with dementia and their family caregivers.
The clinical trial that I currently help organize is a JPND-funded international randomized controlled trial called HOMESIDE. It is for people with dementia and their caregivers and analyses the effects of music therapy on them. It is important for us to not just include people with dementia, but also their partners or family members, because they can tell us more about the specific needs of their loved ones or their care requirements.
As the clinical trial manager, I am responsible for communicating with all the different participants and their caregivers on different levels of understanding. When I for example explain the aim and working of the study, I need to understand first what people already know. Additionally, I coordinate the psychologists and therapists at our site of the study in Germany so they know what they need to do when.
This clinical trial is an international research project, which takes place in five countries (Australia, Norway, Poland, UK and Germany). Communicating with our international consortium members is also an important part of my role.
Every clinical trial undergoes different phases. My tasks change in every phase from the beginning, where I mostly work on reaching out to patients through various platforms or avenues. ClinLife® is one way of reaching patients that has been very helpful for us. Once patients complete the pre-screener and register and let us know that they are interested in participating, I contact them by phone.
I then explain again what they can expect from the study but also what we expect from them when they participate. Besides setting these expectations, I also explain the ethical clinical trial standards (that ensure the rights of the participants), from the health authorities and ethical committees that we have to follow.
Q. What does your day to day working day look like?
My working days now consist mostly of talking with the different people involved in the trial. The outbreak of COVID-19 has changed this a lot, as these conversations are now all phone calls, video conferences and by email.
On a more technical side, my work is also to prepare the clinical trial by translating research documents from English to German, talking with several involved research organizations and governmental institutions about what we want to do in our study and how we plan to do it. These governmental and European institutions review all clinical trials to make sure they follow the strict ethical regulations.
“With clinical trials, we hope to be able to show scientifically that music therapy works and this will help to get music therapy treatment funded by health insurances in Germany and in other different countries and make it accessible to more people who can benefit from it.”
Q. What is your biggest motivation for doing clinical research?
My biggest motivation comes from the fact that I personally have experienced that music therapy has positive effect. As I have seen how it can help people, I want to bring it to as many people as possible. Especially people who often would not receive treatment otherwise. With clinical trials, we hope to be able to show scientifically that music therapy works and this ultimately will help to get music therapy treatment funded by health insurances in Germany and in other countries as well.
Even before the start of the pandemic, most people with dementia had only access to care in their home. This has only worsened as this group of people are often a risk group and are not able to visit the research center or hospitals where most of the other therapies take place. As our treatment is able to take place at peoples private home, this makes it more accessible to people with dementia.
Reaching these people, is more important then ever before as many of them have become very lonely because of the pandemic situation.
Q. What are your memories about participants in your clinical trials?
I have many good memories about the participants in our studies, but one is vividly in my mind even today. The participants were a lady and her husband with advanced dementia. He couldn’t talk and was very isolated, this situation was very painful for both of them. As part of the therapy, me and the lady talked about what different songs he liked and as we started singing one meaningful song next to him he started singing with us using the right words and in the rhythm of the music. It was a very moving moment, where they were able to connect again through music.
“Some patients and their caregivers fear that being involved in a clinical trial is burdensome and tiresome, but many who participated later tell that they felt positively comforted by participating.”
As a researcher I get a lot of feedback from patients as I accompany them from the beginning of the clinical trial until the final assessment. One very moving story is that recently I got a letter from a lady who participated in a music therapy trial together with her husband who now had passed away. She wrote to me that she was very grateful that they could have participated and that experiencing music therapy has given her many positive memories and days together.
Some patients fear that being involved in a clinical trial is burdensome and tiresome, but many who participated in music therapy trials later tell that they felt positively comforted by participating.
Q. Decentralized trials, or trials that require less visits from participating patients and instead have contact with them digitally, is a new upcoming in clinical research. It aims to make participation in clinical trials less burdensome and give more people the change to participate. How do you think that this method influences the experience of participants?
I think it has both good and negative sides for research and patients. On the one hand, a positive aspect is that a lot more people who would otherwise not be able to participate now can join a clinical study. People all over Germany can join now, not just in cities but also in rural, countryside, areas where there are often no research centers close by. For patients in cities, who can’t easily walk larger distances or can’t leave their house due to COVID, it is also a possibility to participate.
On the other hand, the only connection you have with people is by screen and phone and that misses out a lot from face-to-face conversations. I personally also miss talking to people in real life and for research it has also downsides. If I meet with a patient in a room, there is lot stronger connection and there is more information being shared then just in the words. I can see the posture of someone, their facial expressions, the tone of their voice and I believe these are all important to get the best understanding of patients. I fear that besides the information we miss, we also rather lose some of the personal and human side of it.
Q. Since COVID-19, clinical research is in the news almost daily. Research into the efficiency of new vaccines and treatments are for instance discussed in detail and also clinical trials for the new vaccines often reach the news. Has this changed your day to day experience as a clinical trial manager?
I think most people that are part of our trial were already open to clinical research. Maybe it is helpful that COVID has made research such a big thing in the media, but even before I rarely had a conversation where I had to explain why we do the research we do. But the area of my research also makes it different compared to medical trials. Most people seem interested in and open towards music therapy.
Concerns we often hear from our participants regard privacy and data security. As we explain to them that we will record our sessions, a question that we often hear is how we store this data. Then I can explain that we securely store it, never share the data with third parties and anonymize the data all following the regulations. Anonymization means that the data can never be traced back to them and data security means that the data will only be used by a small group of researchers and nobody except them.
“Participating in clinical research has two positive effects, one for yourself as participant personally, and one for society. If more people participate in trials we learn more and ultimately this helps society and more of us to get better treatments.”
We also get questions about music therapy from people who think that it won’t work for them because they are ‘not musical’ or ‘don’t play an instrument’. Some other people are skeptical because they think it will not work because the dementia is too advanced. But I can then easily explain and reassure them that you do not need specific skills or experiences to benefit and that we can adjust our treatment to the individual needs and preferences of our clients.
Another problem can be that some people might expect too much from clinical trials and that they have high expectations that it all will become easier. It is also an important task for me to help people see the treatment in a more realistic way, explain to them in which specific areas they can expect which positive changes.
I think that participating in clinical research has usually two positive effects, one for yourself as participant personally, and one for society. If more people participate in trials, we learn more about different treatment options, we can learn what works and what doesn’t work, and this ultimately helps society and more of us to get better treatments.
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