Learn more about the Patient Partners behind the Patients Improving Diagnosis in Research (PAIRED) initiative.
Metropolitan Chicago Breast Cancer Task Force
I am honored to be a participant of the project Patients Improving Research in Diagnosis. Professionally and personally, I have always had concerns about delayed diagnosis and/or misdiagnosis in many diseases or conditions. I consider this opportunity extremely important to health care and its outcome to illness. Proper diagnosis can impact disparities as well.
National Kidney Foundation
I am very excited to be able to provide my perspective of my personal experience with patient advocacy and clinical research. My background as a healthcare professional and transplant recipient enables me to see the healthcare field from multiple perspectives. I believe in the vision to create a world where no patients are harmed by diagnostic error. I relish the opportunity to give back by being a part of this collaborative.
I believe when individual purpose aligns with organizational purpose, great things happen. Improving the patient experience by empowering them to openly communicate with medical providers is a passion of mine. I truly believe it can lead to improved patient care from diagnosis to recovery. I am excited and grateful for this opportunity to partner with the SIDM PCORI Award, participate in the development of the Patient Partner Academy and make a difference in the lives of others.
As an educator, I am intimately aware of how important developing an accurate diagnosis is. Being a woman with, and working with women with, heart disease, many of my heart sisters were misdiagnosed and many haven’t survived that misdiagnosis. Developing a “process” for diagnosis and understanding all the variables is critical to successful management of both chronic and acute disease. It is critical to patients and their families that they receive the appropriate information to live their lives in the most satisfactory, happy, and healthy lives. It all begins with diagnosis.
Desiree Collins Bradley
Patient engagement is a vital component of health care and I am a firm believer in the philosophy "don't make decisions for us without us." My mission is to help move health care in the best possible direction it can go. Being that my daughter has very complex medical needs it has empowered me to become a strong advocate for patients. I believe that we can co create our health systems, policies, quality measures, processes and culture of care together with patients as equal partners at the table.
Lt. Colonel Steven Coffee
I am excited about participating in an initiative whose sole purpose is to improve medical outcomes and accuracy in diagnosis. I believe, too often, when there are diagnostic errors, there is a gap between patient involvement and understanding the physician.This notion is highlighted in my son Steven’s story. As a first-time parent, I was very meticulous in following all instructions given by the hospital staff regarding my son’s condition. When there was preliminary discussion regarding galactosemia and implications, I was not privy nor involved with making a decision regarding my son’s health care. Subsequently, when I received conflicting information about which way to proceed I decided to go against my “gut” and follow the medical advice. With the advent of this type of study, I hope to bring my experiences to bear as we continue to improve the shared decision-making model of care across health systems.
I am participating in this initiative because misdiagnosis is a major issue in health care that adversely impacts patient outcomes generally and those with Lyme disease, in particular. As the CEO of LymeDisease.org, principle investigator of its big data patient registry, MyLymeData, and someone who has been personally touched by Lyme disease, I am aware of the personal, familial and societal costs of late diagnosis. Lyme disease is an infectious disease caused by the bite of a tick and is treatable with antibiotics. The CDC estimates that over 300,000 patients a year contract Lyme disease. The majority of patients who are diagnosed and treated early are restored to their previous state of health. However, in patients who are not diagnosed and treated early, the disease progresses to late stage or chronic Lyme disease, when it is much more difficult to treat effectively.
Through this group I hope to continue my healing by finding solace in sharing my story. I hope to instill the signs and symptoms leading to sepsis from the patient point of view from start to finish. Also, to help providers understand that the healing goes beyond the hospital bed or the office. I was someone that thought that sepsis only affected the health compromised and elderly population. I want to increase awareness that this can happen to young healthy people as well. Together as a diverse group of patients and caregivers all united with a common goal, we can help ensure the best methods possible are used in future diagnosis and treatment. I’m honored to have been chosen to serve with this team, and look forward to contributing in any way I can.
Because of my experience, I’m very interested in helping to improve diagnosis and to eliminate errors. I’m honored to be selected for this important work. I look forward to working on this research project and developing the Patient Partner Academy, which, in my opinion, could have a tremendous impact on health care.
American Diabetes Association
I am a type 1 diabetic, initially diagnosed as type 2 at age 51. I did not fit the characteristics for type 2. It turns out it was a very slow emerging type 1, which was finally diagnosed as type 1 at age 59. This did not turn out to be a problem for me, but the type 1 test could have been done years earlier. Diet, exercise, access to medical equipment (insulin pump, continuous glucose monitor) and a great endocrinologist are very important. Patient involvement in managing diabetes is critical.
National Kidney Foundation
The SIDM research project, Patients Improving Research in Diagnosis, presents a great opportunity which will enable me to express my thoughts, ideas, and personal experiences as they relate to kidney disease and life. Research is the foundation and launching point to open the doors to earlier and more accurate diagnosis and treatments. As a participant, knowledge gained will be communicated and shared with others in the kidney community to expand upon for the betterment of those who suffer from chronic kidney disease.
I am excited to take my local advocacy onto a wider, broader stage of impact. This committee has the potential to do nationwide what I've often fought to do in Baltimore, MD. I am eager to meet other advocates who realize the importance of this massive change within the medical community.
Kimberly R. Rodgers
American Heart Association
Based upon personal experiences of being a caregiver to her father who suffered a major stroke in 2008 and she suffered a mild stroke 2014 while still caring for her father; put a great deal into perspective after these medical situations. Being African American and born and raised on the south side of Chicago, Ms. Rodgers was dismayed by how much miss-information or lack thereof has been provided to minority communities as a whole. Since then, she has become an advocate in educating minority communities and all women about strokes and preventive measures. She currently serve on two boards at Northwestern Hospital helping to provide better approaches to bridging the healthcare gap to minority populations.
M. Suzanne Schrandt, J.D. Suz Schrandt, JD, is Director of Patient Engagement at the Arthritis Foundation. Schrandt previously served as Deputy Director of Patient Engagement for PCORI, where she helped to launch key efforts including the Engagement Rubric, Engagement Officers, and the Pipeline to Proposals program. Schrandt's patient engagement focus stems from her own rheumatological diagnosis at age 14. Since then, she has been involved with patient and clinician education and advocacy initiatives aimed at early, accurate diagnosis and patient-centered, team-based care. Schrandt’s prior posts include roles in health and disability law and policy, genetic discrimination, and public health. Schrandt is current chair of the ISPOR Patient Representative Roundtable and a member of the FDA’s inaugural Patient Engagement Advisory Committee.
I lost my brother this past November unexpectedly to an undetected cancer that resulted in his sudden death. He was only 39 years old. I’m honored for this opportunity to provide input and help improve diagnosis in medicine. Based on my experience, I believe the need for attention and detection of diseases in young people is a great one. It is my mission to be a part of any improvement in the area of diagnosis that can potentially save lives, no matter what age.
Hear from Patients
Patient stories guarantee the patient voice is heard in efforts to improve diagnostic quality and safety.
Work with a Patient Partner
Want to include the patients' perspective in your next research effort? Let us know and we'll work to connect you with one of SIDM's Patient Partners.