Getting engaged with research
Researchers at Cardiff University’s Huntington’s Disease Research and Management clinic, in collaboration with the Centre for Trials Research, are trying to find a solution to problems caused by Huntington's Disease by working with people who have the disease, their family members, carers and professionals.
Keeping active has the potential to make a real difference to those living with Huntington’s disease.
Huntington's disease is an inherited neurological disease, which over time results in progressive problems with movement, thinking and behaviour, and ultimately, difficulties in undertaking usual activities of daily living.
Although we know that keeping active can have real benefits, it has been difficult to develop an exercise programme which can be easily maintained, as the day-to-day realities of people living with Huntington’s Disease can make it challenging to complete.
The ENGAGE-HD study, funded by Health and Care Research Wales, has evaluated a home-based activity programme delivered by a trained physical activity coach, which included a purpose-developed exercise DVD and a physical activity workbook.
Public involvement is key
Professor Monica Busse, researcher, asks Astrid Burrell, member of the Involving People Network, about the role of public involvement at the heart of this study.
I was already a member of the Wales Huntington’s Disease Involving People Group. [A group of members of the public involved in the work of the Cardiff Huntington’s Disease Research and Management clinic.]
Monica Busse was pleased with my work on other studies, and we had developed a very good working relationship. She e-mailed me to ask if I would be willing to review the ENGAGE- HD workbook.
I was particularly interested in this study regarding physical fitness, as my own husband with Huntington’s Disease had managed to stay fit longer than we dared hope, because of his physical fitness, walking and somehow playing golf almost right up to the time he went into care.
I knew I could bring a lot of experience to this study.
I wanted to put my past experiences to some use and to play my small part in helping to improve the lives of people with Huntington’s Disease.
I was involved in the focus groups that were conducted to inform the production of the ENGAGE-HD Workbook.
I then reviewed the actual ENGAGE-HD Workbook to ensure that everything could be fully understood and easily read by Huntington’s disease participants.
In addition, I always proof-read any work with which I am involved, and I now have a reputation for being very thorough! This was of course particularly important when the Workbook was to be printed and published, and proof-reading is something which I love doing, as well as my role as a reviewer.
After reviewing and sending my comments in, Monica and I had telephone communication to clarify various things and we have developed a friendship and a lot of respect for each other.
Above all, I think I have learned of the dedication and enthusiasm of the team in Cardiff. They are a wonderfully inspiring group of people who go over and above the call of duty to try to improve the lives of Huntington’s disease families.
It is vital that members of the public fully understand any research studies that they are asked to participate in, and that they also fully understand the implications.
Sometimes researchers may use language that we lay people do not understand and it is important that that is clarified.
Despite maybe not having scientific or medical knowledge, sometimes we family members know more about actually living with an illness than a researcher could possibly know, and this information can be useful to researchers planning and evaluating their research.
All the researchers I have met have welcomed and respected this input.