I believe patients should be included in every phase of a research study, from inception to completion.
I believe study participants should get a copy of all of their medical data collected.
I believe the Informed Consent should be written in layman's terms and clearly outline risks and benefits.
I believe if my participation contributes to a drug winning FDA approval, I should receive that drug at no cost for as long as I need it.
My journey from patient to activist started with my MS diagnosis in 1999. Living in a small, rural town I only had one option for a neurologist and since he was the expert, I trusted him implicitly.
That misplaced trust nearly cost me my life.
the early years
After eight years of ineffective treatment under the care of a doctor who wouldn't listen, my MS was out of control. One day I reached critical mass. I considered killing myself. Instead, I found a new doctor.
how sharing began
My new neuro was the primary investigator for a study he thought I should join. I Googled but could find nothing about research from a patient perspective. Determined to change that, I blogged my trial from start to finish.
My blog caught the eye of Pharma and I was invited to speak at one conference after another. I talk about including patients in study design, patient engagement, and improving the Informed Consent.
Little did I realize, as I considered suicide, that I would on day become an activist. It wasn't part of my plan. But participating in research gave me back my life. Since starting the trial on September 20, 2007, I have only had one minor MS relapse—a dramatic contrast to 8 straight years of misery. I have research to thank.
I'm inspired to share my story so that others living with chronic illness will be aware of research as an option. I founded Partners in Research to educate the public about the importance of research and the need to volunteer. I am also Director of Patient Intiatives at HealthiVibe, LLC where we offer a systematic, structured process for pharmaceutical companies to obtain valuable patient insights around clinical trial design and patient-centered initiatives. The company is guided by the premise that patients should play a more instrumental and active role in clinical studies before they're designed and conducted—and throughout the entire patient journey.
If you wish to contact me, you may do so through my LinkedIn profile.