The Power of the Parkinson’s Patient According to Tom Isaacs: A Call to Action

Original article: The Power of the Parkinson’s Patient According to Tom Isaacs: A Call to Action, European Journal of Neuroscience: to be published early 2019.

The takeaway

Soania Mathur adds her powerful advocate voice along with the words of Tom Isaacs, a person with Parkinson’s and founder of The Cure Parkinson’s Trust. She outlines four key ways in which people with Parkinson’s can become active participants in the search for better treatments and a cure.

Why is it important?

This is a call to action from within the Parkinson’s community highlighting concrete ways in which Tom’s core principles can translate into action today.

Impact quote

“There are a few people that I’ve come across during my journey with Parkinson’s disease, people that you can see are visionary, whose dedication to the community is so selfless and passionate that you can’t help but be inspired by them. Tom Isaacs embodied those qualities. His insightful and impactful vision of patient involvement in identifying needs and urgently pursuing the discovery and development of better treatments and the search for a cure, will be a part of his legacy. His words will, I’m sure, continue to inspire the Parkinson’s community to continue work together to reach our common goal – a world without Parkinson’s.” 

Background

Tom Isaacs, who founded The Cure Parkinson’s Trust 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 Mathur captures the essence of the principles that can fuel an empowered, active community. She outlines four ways in which people with Parkinson’s can engage in eventually relegating 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.

In the words of Tom Isaacs, “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.”

Original article: Mathur, S. To be published early 2019. The Power of the Parkinson’s Patient According to Tom Isaacs: A Call to Action, European Journal of Neuroscience.

 

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