THE OPTIMUM CARE FOUNDATION SOLUTION:

 

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.

 

RESOURCES NEEDED AND ACTIVITIES:
To increase health literacy in patient caregivers and families, The Optimum Care
Foundation focuses on a handful of established models and media to communicate
various health directives, treatment guidelines, support messaging, and linkage to care
messages. All these positively affect social determinants of health in the population.
Additionally, The OCF prioritizes a Peer to Peer (P2P) methodology for much of this
work, as those within the marginalized community have the highest trust levels in those
affected by diseases. Finally, health literacy information is vetted and peer-reviewed by
medical professionals, scientists, and clinicians who all have expertise in diseases,
disorders, and other specialty areas.
Currently, The GFPD employs the following resources to increase health literacy in
caregivers:
- Intake and Case Management with P2P Leadership and Expertise
- Social Media (more than a third of social media posts directly address various
health literacy directives, suggestions, education, treatment guidelines, linkage to
care, and more)
- Email Communications - Each email communication to families and caregivers
contains important health information for their patients.
- Blog - The OCF utilizes a blog to post information, research, scientific advances,
medical treatment guidelines, etc.
- Website - The OCF website is a growing resource of the latest information about
various disorders including correct clinical classification, comprehensive
treatment guidelines developed by a team of physicians, linkage to clinical
providers, information on support groups (online and en vivo), and more.
- Conferences - The OCF will host a conference every two years designed to
increase health literacy and outcomes in both the caregiver population as well as
medical care providers, scientists, clinicians, academics, and other professionals.
- TeleECHO - The OCF will produce a 10-part TeleECHO series beginning Spring
2025 in partnership with Optimum Care to directly provide medical education and
learning to physicians, medical students, scientists, and other care
providers/clinicians.
- Online Webinars - The OCF will monthly webinars on various health and
treatment topics specific for caregivers and patients to empower families to
become more knowledgeable clinical advocates for their patients.
Almost all programs are designed to effect positive change for social determinants of
health in the rare disorder population.

 

ASSUMPTIONS:
- Caregivers will have more medical and scientific information when making care
decisions in partnership with their physicians and clinicians. This creates a
shared-decision model of care that is a healthcare best practice.
- Caregivers will have more knowledge about necessary interventions and
treatments for various comorbidities that include distinguishing preventive care,
maintenance care, acute or urgent care, emergency care, and palliative care for
the patients they represent.
- Families have a network of trained peer specialists to help answer basic and
even more advanced questions about disorder development, symptoms, care
provisions, and other necessary information to increase health literacy.
- People with inadequate health literacy may utilize more resources through more
frequent use of inpatient and emergency department visits and have higher care
costs with poorer health outcomes.

 

DESIRED CHANGE:
Caregivers and family members with higher health literacy about general issues and
those specific to diseases or disorders will report better quality of life, lower health care
costs, better access to care, better clinical outcomes, and better communication with
their medical professionals and other clinicians. This higher literacy will also increase
the impact of positive social determinants of health for patients, caregivers, families and
others affected by rare disorders.

 

DESIRED OUTCOMES:
- Education and empowerment of key “peer to peer” advocates with high levels of
health literacy and understanding of complex needs of patients and caregivers
- Faster recognition of symptoms needing medical attention (acute, urgent,
emergency, long-term, or palliative)
- More direct, expedited communication with physicians and other clinicians to
describe symptoms, problems, advances, or regressions in disease progression
- Understanding of severity of disorder, progression, necessary interventions (such
as hearing or mobility), etc.
- Greater adherence and compliance with established treatment guidelines for
diseases and disorders
- Linkage to appropriate specialists for various comorbidities or disorders
associated with any diseases and disorders
- Attention and positive impact as health literacy relates to social determinants of
health for patients, families, caregivers, and others affected by any diseases or
disorders