Advisory Panel on Patient Engagement
“I may have cancer….. But it doesn’t have me…….” has been my mantra since being diagnosed with Stage III-C ovarian cancer in 1999. As a previously very healthy person, the world I entered was one of procedures, a foreign language of medical terminology and no easily accessed patient education materials. I knew of no survivors, only several women who’d had this disease but all were deceased. I did not make informed healthcare decisions; I followed the directions of my physicians.
When a PET scan was ordered, considered the “gold standard” for determining response to treatment, I paid for my PET scan, as it was not covered by insurance. I contacted Centers for Medicare and Medicaid (CMS) asking why this procedure wasn’t covered and learned there was no data available about the scan for coverage. I became a Patient Advocate! I worked with a group of nuclear medicine researchers and physicians to form the National Oncologic PET Registry (NOPR), resulting in a “coverage-with-evidence-development” study. More than 87,700 patients received scans through the registry. Results indicated 36.5% of patients anticipated treatment changed due to the study results. Many resorted to short-term loans to cover their scans; many died while still making installment payments.
The CMS Director of Coverage and Analysis Group noticed my name on a list of attendees at a meeting and introduced himself to me. He stated my advocacy was a driving force in CMS working with the private medical community, that I may not realize my advocacy made a difference for thousands of patients. I was honored to hear his words; one patient speaking up makes a difference!
My experience as a Patient Advocate since 2005 remains largely unchanged, I represent patients. I work with two national research groups to promote evidence-based research. Patients choosing to actively participate in their healthcare decisions feel a greater sense of control. I believe research should be accessible to patients for making informed healthcare decisions. I worked with the Society of Nuclear Medicine and Molecular Imaging to create a patient-friendly website that’s easily navigated with information in lay language. All patients have the right to understand the treatments and procedures they undergo plus receive results of tests in a timely manner. The patient has a profoundly different perspective from the researcher or physician when discussing healthcare decisions.
As a patient / Patient Advocate, I wholly support the mission and vision of the Patient-Centered Outcomes Research Institute (PCORI). My goal as a member of the Patient Engagement (PE) Advisory Panel is to work cooperatively with panel members toward meaningful patient-centered research, to make that research available to patients to make informed healthcare decisions. As that patient, in 1999, if I’d had research and information available for healthcare decisions from reliable sources, I would have felt a greater sense of control of my own healthcare outcome. Patients faced with life changing medical decisions, need reliable resources to reach out to for unbiased, accurate information. The informed patient will guide their desired healthcare outcome.