“No sir, I don’t”, was my reply. Such a question has been posed by the chief of staff for a U.S. Senator. “You know what you’re wanting to change’, is a comment that I’ve heard before as I share the message that it will take more than willing participants in the clinical trial process to effect change. “You’re not looking at seeking change on a small scale, which is a monumental task”, is one of my favorites, and the one that stays with me and drives what I continuously do is, “You’re tenacious, but respectful”. The reason for having such a focus as I write, call, blog, post, tweet, etc. is that the message has been developed, for me, over a period of about four years. I must say that there have been many advocates that have worked at getting the message out for many more years. Fortunately, there seems to be a shift in how researchers are reaching out to patients/stakeholders/advocates to make them part of the research process. A minor shift, but a shift nonetheless.
What has been the difference between now and ten years ago? I believe social media is helping to get the word out, yet at the same time, is keeping the message from being able to have the effect that we want it to have. The reason? There are so many things for us to look at that we can like, share, link, etc. that it dilutes the message, unless it is timed correctly, or better yet, posted over several times to get the best coverage. If the message is clear and concise, then we have the best chance of it hitting the mark. Thus, the title for this post. Albert Einstein is quoted as saying, “If you can’t explain it simply, you don’t understand it well enough”.
The federal level- funding needs to continue, at minimum, at the current levels so as to allow for biomedical research to come up with better treatments, and ultimately, finding a cure, along with a change in the funding formula that requires an amount in the research budget to cover the expenses that volunteers incur as a result of participating in clinical trials.
The researcher level – the voice of the patient needs to be an equal part of the research team, so as to know what the needs of the Parkinson’s community are, and need to be researched, and equally important, providing the means for the clinical trial volunteer to be able to take part in trials without the “expense” cloud hanging over their head.
The patient level – the willingness to be part of the clinical trial process in order to complete trials on time and results out to the Parkinson’s community sooner.
I know that the message is getting out far and wide because of the opportunities given to me to share in blog form, on the Michael J. Fox Foundation’s blog, speaking directly to researchers and deans of some of the best research facilities in the country during the Clinical Research Forum’s Annual Meeting, invited to speak about the Parkinson’s Advocates in Research (PAIR) program and clinical trial participation at the Southeast Parkinson’s Disease Conference in Atlanta, scheduled to speak in a session at the World Parkinson’s Congress in Montreal, and others that are in the development stages.