New York, New York
CDRN Association: New York City Clinical Data Research Network (NYC-CDRN)
PCORI Guest Blog Contributing Author: An Aspirin a Day, But What's the Best Dose?
I am a patient representative on the NYC-CDRN board and they asked me to join the ADAPTABLE study as an Adaptor. Once I learned about PCORI and PCORnet and their patient-centered focus, I became very excited and knew that I wanted to be involved.
I am the youngest of 12 children. We all have diabetes. Today, there are only three of us alive. Diabetes has ravaged my family, but not defeated us. This hard wake-up call lead me toward advocacy in chronic diseases and clinical research, and is the reason why I fight today for patient education and participation in clinical trials. I worked closely with physicians at Montefiore Medical Center to manage my diabetes and with innovative researchers who restored sight in my left eye. It was this exposure to researchers where I developed respect for the value and impact of clinical research and those who work in this field. I attribute regaining my sight to the spirit of these researchers, who, when all hope seems lost, press-on seeking solutions, giving hope to those who were given no hope. Researchers are slow and methodical, as they should be, because they don't take their responsibilities or our trust lightly.
How is ADAPTABLE making a difference in patient-centric research?
In ADAPTABLE, Adaptors are working with researchers to generate results that will impact the future of healthcare. We are greasing the wheels of this large national network and teaching health care professionals and health care system leaders the value of involving patients in all aspects of clinical research. In addition, patients are learning how to work with researchers and health care professionals. The process can be slow and overwhelming for people who are research naïve, but I like to assure them that they soon will be comfortable with the methods and words used. I often tell people who are new to research: I know at first it seems so foreign and you feel that you will never pick up the acronyms, but in time you are going to get really good with the lingo. It is going to take some time, but be confident in the process.
Our study conference calls provide great learning opportunities for both groups—researchers and patients. The clinicians’ commitment to clinical research runs deep and I have great respect for their dedication to improve the health of their patients. For some researchers, working with patients is a new venture, but I sense that they are walking away from our meetings with the feeling that working with patients provides great value and perspective. These calls provide an opportunity for patients to ask questions, voice their concerns, and know that their comments are being heard and considered. There is a great mutual respect, investment, and a shared bond that what we are doing is good and will make a difference.
What impact can Adaptors have in ADAPTABLE and beyond?
Adaptors will be key in engaging other patients in the ADAPTABLE study and in clinical research. Hearing from other patients on the role and value of patients and caregivers in the design of clinical trials will help others to be involved. In ADAPTABLE, patients are not only helping in the study design, they are reporting their own data. Adaptors will be instrumental in the dissemination of study results. This is the future of clinical research and we owe it to ourselves, to other patients, to researchers, and to the broader clinical research community to be involved in the process. We owe it to future generations to transform clinical research; this will be our legacy.
What do you enjoy most from your involvement in the ADAPTABLE study?
The like-minded consensus on securing the future of “Patient-Centric Clinical Research."
What is your favorite book, movie, or song?
Book: Paradise Lost, John Milton
Movie: Life is Beautiful
Song: Yo-Yo Ma playing “Gabriel’s Obo”
What would be the three words your friends use to describe you?
Passionate, Intelligent and funny
What is the best piece of advice you have ever received, and who gave it to you?
I like the Ghandi quote: “If you can’t see God in the next person you meet, you need look no further”