Guest post by James Beck and Paul Zimmet, Parkinson’s Disease Foundation.
Many scientists, as evidenced by recent discussions, appreciate the value of an open access journal – the convenience of being able to immediately and freely access the latest articles, for example, and the value in a freer exchange of scientific ideas. But what may be less obvious is why this matters to the community served by the Parkinson’s Disease Foundation (PDF) – the patients whose lives are directly impacted by the advances and disappointments in Parkinson’s disease research.
Just two months ago, when the PDF announced its partnership with Nature Publishing Group (NPG) in launching npj Parkinson’s Disease, both communities were on our minds. Our primary goal of working with NPG is to create a home where the best science about Parkinson’s disease can be gathered in one place for all to read and freely shared. But equally important to PDF is the goal of empowering the Parkinson’s community to be a part of the research that will ultimately solve their disease.
People with Parkinson’s disease, or any chronic condition, need to be well-informed about their own disease in order to fight it effectively. But how can you do that when most people do not have direct access to the latest research on the disease?
PDF believes that open access can help to change that. In this way, open access is the right thing to do for the patient community. But even more compelling, we would argue that it is the effective thing to do … because it can accelerate Parkinson’s research.
This has been our experience working with our network of more than 200 PDF Research Advocates. They (including one of the authors of this blog) can directly attest to the effectiveness of this patient engagement approach.
Take for example, a key roadblock to new therapies in our community – the dearth of people living with Parkinson’s disease who are participating in clinical trials. As part of PDF’s Parkinson’s Advocates in Research program, our Research Advocates work on the front-lines with scientists to help bring about better therapies. They have reported to us that the training they receive from PDF has empowered them to participate in clinical trials, and to spread the word to their communities that participation is critical to finding better therapies. These individuals act as a bridge to inform the community about research and thereby increase trial participation.
Open access provides a similar mechanism. By giving people with Parkinson’s unfettered information about research and the promise it holds, they may be more likely to get involved – not only in clinical trials but in all stages of research. This is why an important feature of npj Parkinson’s Disease will be the lay summaries that will accompany each original research article.
PDF brings the patient perspective to open access, helping to demystify biomedical research and serve to make the science more understandable.
At PDF, we believe that empowering patients and scientists with access to information will help us come closer to ending Parkinson’s disease. Our partnership with Nature on npj Parkinson’s Disease is a step in the right direction.
James Beck, Ph.D., is Vice President, Scientific Affairs at the Parkinson’s Disease Foundation. He oversees the strategy of PDF’s research programs as part of the organization’s mission to end Parkinson’s disease. Paul Zimmet, D.D.S., is a retired dental professional and a Research Advocate with the Parkinson’s Disease Foundation. Among his activities as a PDF Research Advocate, he served on the Institutional Review Board of Georgetown University Hospital and recently represented PDF at the Society for Neuroscience Annual Meeting in Washington, DC.