Dr Soania Mathur was 27 and expecting her first child when she was diagnosed with Young Onset Parkinson’s. Resigning as a medical practitioner, she is now dedicated to advocating Parkinson’s research and educating people with Parkinson’s on how to optimise their quality of life and the importance of clinical trial participation in the search for better treatments and a cure.
Tom Isaacs, who co-founded Cure Parkinson’s and lived with Parkinson’s, saw himself and others with the condition as active participants in the search for better treatments and a cure. His core belief was that patients must be involved at every step of the way. Sonia captures the essence of these principles and outlines four ways in which people with Parkinson’s can engage in the journey which will eventually relegate this condition to the history books.
1. Patients as resources
It will not be possible to progress toward better treatments without fully understanding Parkinson’s. The best people to inform the scientific community about this are those living with the condition every day, experiencing the tremendous variability in symptoms which is so hard to capture and convey in a one shot clinical encounter. They represent the only source of this essential knowledge, and their testimony and voice are invaluable.
2. Patients as informed partners
It is essential for people with Parkinson’s to be truly well informed in order to engage actively with research, as they do in their clinical care. Clear communication between researchers and patients is essential, and the community must push for better communication of trial results, free of hype and jargon.
3. Patients as policy advocates
Although financial constraints are an obvious rate limiting step for research, Isaacs argued and Mathur reinforces that teamwork is actually the only thing that can actually create progress. People with Parkinson’s can become powerful advocates, help shape policy, leverage funds from third parties and engage philanthropists. Teamwork is key.
4. Patients as clinical trial ambassadors
It is in the best interests of people with Parkinson’s to be actively involved and collaborate in shaping clinical trials. They can convey the voice and priorities of the community to scientists. But they can also help trial efforts by dispelling myths around it within their community, sharing information about trial recruitment and actively engaging in speeding the long process from lab to pharmacy shelf, approximately half of which is taken up by trials. Mathur writes that about 85% of trials are delayed by recruitment difficulties and a shocking 30% fail to recruit a single subject. There is no time to spare or room for wasted effort.
We, as patients, represent an enormous and untapped opportunity to bring urgency (experience, focus, passion and feedback) to the delivery of the science and to become a significant resource in the quest for a cure. Without such participation, there is little hope that new products will truly meet the actual needs of the people they are made for, nor will they be delivered with the urgency that is required.TOM ISAACS