What WPC means to me - the patient’s view
I have attended three of the four WPC conferences that have taken place so far. The only one I missed was the very first – but that happened before I was diagnosed with Parkinson’s in 2009. The timing and location for WPC 2010 was perfect for me. It took place shortly after I retired early from full-time work and was held in Glasgow (Scotland). My wife and I decided that this would be an ideal opportunity to learn a lot about Parkinson’s in a short space of time, and so it proved. We headed north to Glasgow.
I attended the one-day pre-conference ‘Fundamentals of PD’ course that took place in advance of the main program. The topics included were: Causes and pathology of PD, medical and surgical therapies, future therapies and clinical trials. I would urge anyone who has not been to the conference before, and who does not have a scientific background, to enroll for the Fundamentals of PD course.
The conference program covered these topics and others in detail. The main problem was in keeping up with the vast amount of material that was presented in the parallel sessions, workshops and round tables. Helpfully, the papers were colour-coded according to their level of difficulty. A rule of thumb was that if a delegate found the title of a presentation to be incomprehensible it was likely that he/she would struggle with the paper and presentation as well. In the years following WPC 2010 I set about learning as much as I could about Parkinson’s.
WPC 2013 was held in Montreal, (Canada). Once again, I attended one of the pre-course sessions, but this time I dipped into the ‘Science and Advocacy’ group. I had established a number of contacts at WPC 2010 and being able to share things with others, especially online, was another useful part of my education. Now I felt able to ask questions of the scientists.
WPC 2016 was held in Portland, Oregon (USA) with a record attendance of 4,500. This time I attended the ‘Advances in Scientific Research and Treatment’ course in the pre-congress session. This was the most comprehensive conference so far. Several sessions were dedicated to non-motor symptoms, an area that had previously been under-represented. So, what changes have there been for people with Parkinson’s in the nine years since WPC 2010?
Unfortunately, there have not been any breakthroughs. There is though a feeling that one is near. With the amount of work going on this seems hopeful. The question is how long it will take. People with Parkinson’s need to inject a feeling of urgency into this process. The patient group has discovered its voice.
To my mind the most important development has been the changed status of People with Parkinson’s in the research equation. This trend is not unique to Parkinson’s. Researchers working with other long-term conditions are also seeking input from patients. The traditional distinction between doctors and patients has crumbled as both groups realise that it is more productive if they work together. People with Parkinson’s can contribute to the research process in a variety of different ways from commenting on research materials, helping to recruit participants and in the analysis/interpretation of research data. They can be regarded as the patient voice in research that may, ultimately, help them.
Another big development is the international nature of the patient community with strong voices coming through, particularly in the USA and the UK. The internet and WPC are essential in this process. These provide a medium for sharing information about new treatments and those that show promise. WPC 2019, will be held in Kyoto (Japan), will continue this process and will build further on the strong foundations that have been laid so far. So, for me, WPC 2019 will be a chance to catch up on old friends, to see where the latest research has got to and to ask questions.
Richard Windle, MSc. is currently a patient engagement advocate for the Cure Parkinson’s Trust. Richard Windle presented at the 4th World Parkinson Congress will be speaking at the 5th World Parkinson Congress.
Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not necessarily reflect the opinions of the World Parkinson Coalition®