The problem
More than 11 million family members provided 16 billion hours of care to AD patients in 2021. This number features a decline in the number of caregivers over the past decade, and a significant increase in the number of hours put in per caregiver (Report:2022 AD facts and figures). Extensive stakeholder interaction helped us create a caregiver resource app for Alzheimer’s Disease (AD) patients to decrease their administrative burden and preserve the patient’s routine.
“Highly fragmented data is the most commonly cited roadblock to determining a patient’s care. Health data integration, developing care coordination amongst different specialists and identifying high risk patients will be a first step to bettering current dementia care.”- Allison and Katie, Leeza Gibbons Memory foundation.
Health data fragmentation from a patient’s perspective view below!
Patient’s perspective - YouTube
A recently diagnosed patient with Mild Cognitive Impairment (MCI), Liz is struggling with organizing her thoughts and routines. She now requires care from a host of specialities- Orthopedicians (for osteoarthritis), Neurologists, genetic counselors (APOE4 genetic predisposition to AD) and cardiologists (for hypertension) . In order for this comprehensive care team to communicate and prescribe complementary medication, more paperwork must be filled out. Each physician comes with a host of HIPAA compliance paperwork to relay necessary information to her primary caregiver, Liz’s daughter.
Our app will centralize Liz’s routine and medical records. She can now share medical information between her physicians in a HIPAA compliant fashion with a tap of a NFC card. She can grant her daughter access to her routines, medical records and prescriptions from within the app.
Health data fragmentation from the care team perspective view below!
Care team perspective - YouTube
Liz’s specific genetic predisposition could make her eligible for a few ongoing clinical trials at the MCI stage. Without this genetic report and a comprehensive view of her current medical treatment with multiple physicians, her physician cannot recommend her to enroll in the trial. Additionally,integrated medical information can prevent the doctor from over prescribing medications and tests, bringing down the financial burden on the patient.
Our Solution
We created an app to centralize and integrate information regarding care of an AD patient. This app is a support tool to enable person centered care. It integrates two types of information-
- Personal information: Important events, people and places from the patient’s life. Patient preferences and routines.
- Medical information: Access to patient medical history, current patient conditions, physician updates, prescriptions, privacy and access
Uniquely designed with AD patients in mind, the app can be used to record details about a person who can't easily share information about themselves.When ready to share this information with selected caregivers and physicians, the patient can tap their NFC card to share medical records in a HIPAA compliant fashion. Additional privacy and access settings can be modified in the app.
For the global AD population and their caregivers, the below ‘Forget-Me-Not’ pdf journal has been made available outside the app.It has been translated into Spanish and Tamil.
Find the journal here!Translation- Tamil!
Translation- Spanish!
This journal can be used in a variety of settings- home, in the hospital or in a care home.It may help the physician team tailor and deliver care to the needs of the individual patients. It can also help to overcome problems with communication, and prevent more serious conditions such as malnutrition and dehydration.
Our app is projected to reduce administrative burden on caregivers and can be extended to other patients with multiple comorbidities.
Prototype
