DIME PROJECT
AI-Enabled Care Navigation Framework
for Health Systems
Where navigation breaks down & where AI can help, responsibly
CROSS-CUTTING FORCES
Five forces that shape all phases in the patient journey
The journey moments show where patients get stuck. These five forces help explain why. Each one cuts across all four phases and shows up again and again in the moments above. Any navigation solution, AI-enabled or not, needs to account for them to work in the real world.
Every moment depends on whether patients can recognize a need, reach and afford care, and trust the system enough to engage. Those abilities aren’t evenly shared. 65.8% of US adults have low trust that their health system will use AI responsibly, lower still after discrimination in care.
WHERE THIS SHOWS UP
Cost shapes nearly every care decision a patient makes: whether to seek care, where to go, and whether to fill a prescription or stretch it. Patients delay visits, skip refills, or ration medication because they can’t afford them, and these choices put their health at risk. They usually happen out of the care team’s view. From the outside, a patient who can’t afford treatment can look like one who isn’t following instructions. The response, whether more counseling, a dose change, or a “noncompliant” label, then misses the real barrier.
WHERE THIS SHOWS UP
Patients rarely navigate alone. 63 million Americans, nearly 1 in 4 adults, are family caregivers who book appointments and coordinate care. Yet systems are built as if the patient were the only person in the room.
WHERE THIS SHOWS UP
- Unrecognized roles: caregivers often use the patient’s login; 32%–50% of health systems offer no caregiver accounts.
- Consent and confidentiality: over half of adolescent portal accounts studied were accessed by guardians, failing to account for HIPAA and confidentiality laws.
“One of the families we’ve worked with, she’s taking care of three individuals [with] complex conditions across five different pharmacies, 10 different specialists, and she gets text messages from the pharmacy and the doctor: ‘Your appointment [is] scheduled,’ ‘Your prescription is ready to pick up.’ But because of PHI, she has no idea who it’s about, so her inbox is flooded with all these automations saying, ‘What do I do?'”
– Shantenu Agarwal, CEO & Co-Founder, Carey
- Unprepared caregivers: over half of caregivers perform complex medical tasks, yet just over 20% have formal training.
The settings and people involved in healthcare aren’t always particularly clean:
“Particularly when you’re working with complex patients, you’re often trying to coordinate not only within your institution but across communities. So when we actually do care mapping on our kids, parents identify 33 on average distinct entities that are involved in their child’s well-being, of which only 25% are under medicine.”
– David Bergman, Pediatrician and Professor Emeritus, Stanford University
Read two vignettes from Stanford Medicine Pediatrics for examples of how these challenges uniquely show up in child and adolescent scenarios:
VIGNETTES | STANFORD MEDICINE PEDIATRICS
Jones Family
Jared and Sarah work full time and have 2 kids – Jacob (4) and Itzel (6). Jacob is in pre-school and Itzel is in 1st grade. Jacob has asthma. Itzel is struggling with learning to read. They have scheduled back-to-back well checks for the kids and are in the room together.
Jessica
Jessica is 16 with type 1 diabetes and wears a continuous glucose monitor. Her mom works extra hours, but the two have struggled with food insecurity. Jessica has been resistant to monitoring her glucose and taking her insulin because she just wants to be normal and play volleyball.
Complex patients often see several providers at once, none with the full picture. A typical Medicare beneficiary sees two primary care physicians and five specialists across four practices yearly.
WHERE THIS SHOWS UP
- No shared plan: 69.3% of primary care physicians say they usually send referral information, but only 34.8% of specialists say they usually receive it.
- No single owner: only 35% of a typical beneficiary’s visits are with their assigned physician.
- Real consequences: fragmented chronic care is linked to more ED visits, testing and costs.
Data moves more freely than a decade ago, but workflows often don’t act on it. In 2023, 71% of US hospitals routinely had outside patient information available at the point of care, yet only 42% said clinicians often used it.
WHERE THIS SHOWS UP
Danielle
Maternal & child
Minh
Older adult oncology
Marco
Young adult cardiovascular
Kayla
Pediatric & adolescent
MATERNAL & CHILD HEALTH
Danielle’s care journey
Danielle is 32, Black, pregnant for the first time, and works hourly shifts with no paid leave. Medicaid covers her through pregnancy and for 12 months after delivery. High blood pressure readings at urgent care get no follow-up before she’s pregnant, she waits five weeks for her first prenatal appointment, and she’s induced at 37 weeks for preeclampsia. She goes home with two discharge plans, hers and her newborn Jordan’s, and reads only his. Her home blood pressure climbs, as postpartum pressure tends to peak on days 3 to 7, until on day six she arrives at an emergency room that has no record of her delivery, and her depression is caught only later at Jordan’s pediatric visit. When her postpartum Medicaid ends at 12 months, she is still on blood pressure medication and carries a lifelong higher risk of heart disease.
Age 32, first pregnancy
Coverage Medicaid, through pregnancy and 12 months postpartum
Who helps Her mother, 20 minutes away. Her partner works nights.
What the chart tracks Blood pressure, mood, and baby Jordan
Hover over or tap a moment number to see Danielle’s experience:
OLDER ADULT ONCOLOGY
Minh’s care journey
Minh is a 74-year-old Vietnamese-speaking retired machinist with type 2 diabetes and a long smoking history, and he has Medicare Advantage. His daughter Lan manages his care from two states away. He has qualified for lung cancer screening for years but was never offered it, and his 2.4 cm lung nodule turns up only on a CT scan after a fall. The referral stalls until Lan calls again and again, and his stage II diagnosis brings five specialists, prior authorizations, and discharge instructions Lan has to translate over the phone. During immunotherapy, a local emergency room doesn’t know his treatment history, and a steroid taper destabilizes his diabetes and overwhelms Lan, showing how language, distance, and scattered specialists turn a curable cancer into a coordination problem.
Age 74, retired machinist, former smoker
Coverage Medicare Advantage with Part D
Who helps His daughter Lan, two states away. His wife Hoa has limited mobility.
What the chart tracks Lung cancer, type 2 diabetes, and Lan’s capacity as caregiver
Hover over or tap a moment number to see Minh’s experience:
YOUNG ADULT CARDIOVASCULAR
Marco’s care journey
Marco is 24, Latino, bilingual, and drives for rideshare and delivery companies with no paid time off. He has no primary care clinician and is covered as a dependent on his mother’s employer plan. A smartwatch alert and a chatbot’s advice don’t get him to a doctor, and he ends up in the emergency room with a hypertensive emergency and kidney injury. There, staff call his mother, still listed as his emergency contact from his teens, rather than his partner Ana, whom they can involve if he agrees, and his test results go to a patient portal account his mother set up years ago. Insurance statements later tell his mother about his care, which pushes Marco to decide who gets to know what. At 26 he loses her coverage and his pharmacist-led blood pressure program with it, which shows how a young adult can hold the legal rights to his care while the systems around him still treat his parent as in charge.
Age 24 at the start; the journey runs to about 27
Coverage A dependent on his mother’s employer plan until 26, then his own Marketplace bronze plan
Who helps His mother Lucía, the policyholder. His partner Ana, day to day.
What the chart tracks Hypertension, kidney health, and sleep apnea
Hover over or tap a moment number to see Marco’s experience:
PEDIATRIC & ADOLESCENT
Kayla’s care journey
At 13, Kayla’s type 1 diabetes is first mistaken for a growth spurt, and she is diagnosed only once she’s in diabetic ketoacidosis (DKA). She is transferred to a children’s hospital two and a half hours from her rural home, and her mother Rachel, a night-shift nursing assistant, has three days to learn everything. Back home, Rachel copes with 2 a.m. low blood sugars, a school nurse shared across three schools, and CHIP refusing to cover glucose sensors at first, until remote monitoring by her care team steadies things. As Kayla takes over her own care in high school, she starts skipping insulin to lose weight, and a second DKA lands her in a local emergency room that can’t see her history. At 18 she never calls the adult clinic she’s referred to, and at 19 CHIP ends and her sensors run out, which shows how care breaks down when responsibility, privacy, and coverage all shift in the teen years.
Age Diagnosed at 13; the journey runs to 19
Coverage CHIP (children’s health insurance) until her 19th birthday
Who helps Her mother Rachel, a night-shift nursing assistant. Her grandmother drives her to appointments.
What the chart tracks Type 1 diabetes, Rachel’s caregiving load, and Kayla’s mental health
Hover over or tap a moment number to see Kayla’s experience:
CLOSING NOTE
Care is a continuous journey
Active management doesn’t necessarily have a finish line. For some patients, it’s a durable return to stability. For others, what looks like stability is fragile: the conditions behind the last acute event are still there, better managed for now, waiting for the next lapse in attention. For patients living with chronic conditions, stability and active management blur into the same ongoing state. As one participant in our clinical decision support roundtable put it, “healthcare doesn’t have to end.” The journey is a loop, not a line. Every return to stability is also the start of the next cycle, and the next chance to get navigation right.
