Study After Study Has Shown…
First, duplicative studies won’t get us any closer to a cure. Second, this is not the best use of the limited resources available as we seek high-quality research.
“Study after study has shown..” is not what we in the patient community wish to continue hearing. Case in point is the exercise issue that has been found to help in all aspects of the disease, from helping with depression, mobility, and perhaps even delay the progression. This may be one of the most effective ways, at this point, to help many, but not everyone is on the same page as to the types and duration of the exercise. Putting out a press release but not following up with groups in the patient community and the medical community that can help spread the word seems to make the results a moot point. Clinical trial results need to come off of the shelves and out of the peer-reviewed journals and put into practice.
(The issue addressed here applies only to clinical trials in which patients volunteer to participate. Basic science research and translational research are an entirely separate type of research that I’d like to approach separately at a later time.)
The quality vs. quantity issue comes into play in almost everything that we deal with as we strive to influence research. Many of our fellow people living with Parkinson’s do a wonderful job of fundraising and donating to organizations for research. This in itself is no small feat because it takes much time and effort, and they rightfully should receive credit for the work that they do. These funds should be used wisely, for the benefit of the community with a few high-quality grants rather than many lower-quality grants that may continue the dreaded “study after study has shown” mantra. It is not being cynical in any way, it is just being honest in how research has been done and one of the things that we feel should be changed for the benefit of so many living with this incurable disease.
We live with, and deal with, the symptoms of Parkinson’s daily, but we don’t wish to have it with us for the rest of our lives. Do I feel different today as I did when I first became involved in the advocacy arena? Yes, I do. Why? Because I see some researchers doing much to help out, yet others that do the research for the sake of being published and not much else. Several years ago, I would have referred someone to a study or a trial that may have previously been done because it meant filled trials and patient involvement. Now, I still refer patients to trials, but only with trials that I feel are of worth, investigators that have the patient at the heart of what they do, research sites that cater to the needs of the volunteer, coordinators that are receptive to making sure that expenses related to participating in the trial are taken care of for the volunteer. In essence, we will and want to let others know what is good in research, what is not so good in research, and suggestions for working together to make it more effective. I take my role as an advocate very seriously and aim to help make the quality of life for the millions around the world living with Parkinson’s Disease, the best that it can be. I urge any, and all, to share your clinical trial experiences so that we can help improve enrollment rates, retention rates, and completion rates. No one else has the power to influence what is being done, how it is being done, and what is expected except for the volunteer community, with Parkinson’s Disease, and without.
The patient advocacy community is ready for the next level of engagement. Fellow advocate Larry Khan, from Georgia, has submitted a petition through change.org to the American Academy of Neurology and the American Medical Association titled, “Parkinson’s Patients Request Stronger Guidance From Neurologists on Exercise, Physical Therapy, Clinical Trials and Support Groups For Newly-Diagnosed Patients”. He is committed to changing how this particular aspect of research is being presented to the patient community. Parkinson’s Movement, an initiative of the Cure Parkinson’s Trust in England, is being developed in North America, and aims to take the lead as a patient-led organization to get us to the next level of quality engagement that will someday get us the relief that we need from living with this disease. It is not an easy task but we feel that it is necessary to take our responsibility seriously for all in the patient community.
Moving forward, we need the help of the patient, caregiver, and our family communities to join us at Parkinson’s Movement. Research for the sake of research needs to be changed to research for the sake of improving the quality of life of those of us living with a neurodegenerative disease and finding the elusive cure.