Elaine’s experience of shaping Parkinson's research
Elaine, a research volunteer at Parkinson’s UK, shares her story of being involved with research.
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Last year, Parkinson’s UK and biopharmaceutical company UCB hosted a workshop to bring together people affected by Parkinson’s and members of the UCB research team to plan a future clinical trial. Elaine was one of 15 people affected by Parkinson’s who attended the workshop. Here she reflects on her involvement in the workshop, and the importance of patient and public involvement to improve research.
Why is getting involved in Parkinson’s research important to you?
The nature of this condition can sometimes make people feel that their future is out of their control. By becoming involved it has given me back a sense of control; it feels that I am doing something positive towards changing the future of Parkinson’s and its effects on peoples lives.
I think that it’s essential that, wherever possible, people affected by Parkinson’s do all they can to help scientists discover new ways to treat this condition. The more people that get involved the quicker we will gain understanding of this condition and eventually develop treatments to slow, stop or even possibly reverse its effects.
What made you want to get involved in the workshop?
The workshop was of interest to me because I saw it as a rare opportunity to help shape the development of a research project to better suit a wider selection of participants. Having personally already participated in a number of research projects I had wondered why or how some of the studies had been designed, and whether the researchers had consulted with people affected by Parkinson’s in planning the study. Regardless of my diagnosis, the opportunity to better understand research design has always interested me.
How did you find it? What did you get out the day?
The day was very enjoyable and well organised. It was a relaxed environment where we felt that we could all contribute valuable insight into our condition to UCB and the scientists. Beforehand, workshop attendees were involved in group Skype meetings and were provided with literature about the study. Because we were working with a pharmaceutical company, we were required to sign contracts, which included details about confidentiality. The preparation provided attendees with a clear understanding of the expectations and the structure for the day. Despite this, on the day it seemed that some people had mistakenly thought that involvement in the day would lead to selection onto the study. This highlighted the importance of very clear communication and clarifying understanding when preparing people for this kind of involvement with research.
The workshop helped me to understand the difficulties involved in designing a research study given that our personal experiences with Parkinson's are unique to each of us.
Was there anything that surprised you about working with the pharmaceutical company?
I was surprised by how much UCB truly want to involve people affected by Parkinson’s in the design of their research. The whole team from UCB were welcoming. I felt that our opinions were truly valued, even when we contradicted some key points. I believe that patient involvement is the way forward to design accessible and accurate research.
In January this year, Elaine co-presented at the Patients as Partners Europe conference with Natasha Ratcliffe (Parkinson’s UK) and Kate Trenam (UCB). This conference focused on how to involve the public and patients at every stage of research to improve clinical trials. The presentation was an opportunity to share the experience of the collaborative workshop and what was learnt for the future.
What was your experience of attending and presenting at the conference?
Presenting at the ‘Patients as Partners Europe Conference’ was a new experience for me. I was asked to accompany Natasha and Kate after speaking briefly about my experience of participating in clinical research at the workshop.
We did lots of preparation for our 30-minute slot including spending a day together at Parkinson’s UK office in London.
On the day of the conference we were the first speakers at 9.15am. It was good to speak first, however my medication was due at 10am and together with the effect of my nerves about speaking I really did not know what impact this would have on my Parkinson’s. Needless to say, our presentation went as planned and I feel very lucky to have been a part of such an important conference shaping the future of medical research.
In what ways do you think the pharmaceutical industry are doing well in the area of patient involvement?
I think that the pharmaceutical industry realises that patient involvement is key in the development of the best research models.
As I said at the conference ‘I find it hard to understand how studies can be designed without patient involvement’. I think this approach is becoming the way forward for research design.
In what ways do you think they could be doing better?
I think they could do better by trying to reach and involve a wider group of people to get involved, and by working with organisations like Parkinson’s UK to connect with people. I can see this could be a natural development as this approach becomes standard practice.
I think that the people involved should be offered financial support to cover any costs that they occur whilst contributing to this process — they are key to effective research design.
What were your key take-away messages from the conference?
I felt that the pharmaceutical companies and people affected by conditions such as Parkinson’s are working towards the same goal. Patients as partners in research design is becoming the way forward for all studies.
What would you say to other people affected by Parkinson’s who are considering getting involved in research?
I would say that they need to do what they are happy and able to do. We are all different with our symptoms and progression.
I will continue to participate and get involved in as many studies as I can. I do this for research and for my personal interest in this varied and complex condition. My participation and involvement help me to feel pro-active and to feel that I have taken some control over my Parkinson’s. I feel happier when I am involved in drugs trials and research.
