When parents or caregivers receive a diagnosis of a disease or disorder from a physician, it becomes a catalyst of events that can lead to long, emotional, and frustrating clinical journeys. Additionally, many physicians who make or communicate the diagnosis have little understanding of the disorder, relying heavily upon literature available online which can be challenged for accuracy, pertinence, or objectivity. The diagnosis often comes with grim prognosis, exacerbating the challenges faced by patient families. Even when diagnosed early through newborn screening or symptomatology, families have little information about the disorder, its comorbidities, or resources and clinical services available to them.
Because higher health literacy is tied directly to more positive health outcomes for both clinical care and social determinants of health, The Optimum Care Foundation prioritizes health literacy in all caregivers and families. The Optimum Care Foundation also seeks to increase levels of health equity through health literacy programming while simultaneously ensuring we address the various social determinants of health along with barriers to care. (See literature excerpt at end.) Issues from families often reports:
=> Wrong diagnosis
=> Long diagnostic journey
=> Grim and at times inaccurate prognosis
=> Lack of information
=> Lack of patient advocacy
=> Lack of knowledge of specifics of disorder by medical professionals
The Optimum care foundation is the premiere resource for information, clinical direction, treatment guidelines, networking, medical linkage, conferences, and online learning for patients, families, caregivers, clinicians, physicians, and scientific professionals with familiarity and expertise in different diseases, rare diseases, genetics, and co-morbidities.
It does this through a multi-pronged mission approach that comprises education, convening, support networks, therapeutic supports, patient advocacy, legislative and public policy change, and medical/scientific research. One of the major priorities for The OCF is to increase the level of health and scientific literacy in families and caregivers of patients to improve quality of life, clinical outcomes, and support structures available to them. While diseases impact all populations, rare diseases often create marginalized communities where patients and caregivers feel immense isolation. This is due to lack of knowledge, lack of information, geographic and physical isolation, economic burdens, and other significant social determinants of health factors.
