“In the realm of ideas, everything depends on enthusiasm.
In the real world, all rests on perseverance.”
A higher level of patient engagement is in the works to bridge clinical trials with volunteers, based on the volunteer experience. I was visiting with a friend of mine, sharing the idea for this initiative and her response was that it sounded like the next level of moving research forward and that it was like “Patient Empowerment 3.0”.
Imagine if we could influence current clinical trials by virtue of using our “voice” to “vote” on their effectiveness. Now, realize that this is nothing more than what some of us have been doing when we are involved in a clinical trial, shared with others about our experiences, and recommended (or not) the clinical trial to others in the Parkinson’s community. The only difference is that recommendations, ratings, and comments are shared in writing, giving those whom are considering getting involved to read first-hand about those particular studies.
Is it research worth our involvement in the process?
Is it research conducted with the patient at the core of the study?
Are volunteers treated with respect?
Are expenses related to participating in the trial pre-paid or remibursed in a timely manner?
Are volunteers kept updated on the trial and its outcomes?
If the answers to these questions are shared with the Parkinson’s patient community, (and specific questions about the name of the trial, location, and criteria needing to be met in order to participate) then the power of patient engagement can be felt far and wide. Word of mouth travels fast and the exponential power of patient-to-patient, volunteer-to-volunteer, or advocate-to-advocate referals and recommendations could tip the scales in favor of on-time completed trials, within budget, and the results that matter to the Parkinson’s community out sooner.
Conversely, clinical trials that don’t measure up to the standards set by the Parkinson’s community can find out the reasons why they may not be getting the volunteers that they need to complete the trials, and more importantly, what needs to change on their part to engage the patient community fully.
If you have participated in a Parkinson’s Disease-related clinical trial and are interested in helping develop this initiative that is a truly grassroots effort, please contact me for more information. I’m seeking feedback from the community that this initiative impacts the most, and want to make a difference in helping move research forward. The issue of patient’s medical confidentiality has been brought up. The response is that no medical information is sought from the medical community, and only the volunteer experience is needed, thus no violation of patient-doctor confidentiality applies.
There is strength in numbers, and the strength of the PD community has been largely untapped, and this initiative can truly show that we all can make a difference. Making a difference by volunteering in clinical trials, sharing your experience about participating in clinical research, and helping get clinical trials filled faster by word-of-mouth referals and recommendations.
The best thing about this initiative is that even if someone in our Parkinson’s community hasn’t had a chance to participate in a trial, or can’t for whatever reason, they can still help out by spreading the word about the initiative through their means of outreach.
I do need to mention that this initiative is a work-in-progress and feedback received will be used to develop it further. I have been working on a plan for outreach, but this is also subject to revision based on feedback from the Parkinson’s community.
“A man would do nothing, if he waited until he could do it so well that no one could find fault with what he had done.” Cardinal John Newman
Please join the list of people whom have helped through the years to recruit, recommend, and continue to work as advocates for Parkinson’s Disease clinical trial participation… Steve, Linda, Perry, Jean, Sheryl, Peggy, Paula, Paul, Jane, Brenda, Tom, Jon, Vicki … and countless others.
The Parkinson’s Disease Foundation has been doing their part with the Parkinson’s Advocates in Research initiative (PAIR Program) and The Michael J. Fox Foundation for Parkinson’s Research has, as well, with the Fox Trial Finder. It’s now time for the Parkinson’s community as a whole to realize the potential that we have in creating change and help in finding that elusive cure.
I can be reached at: firstname.lastname@example.org