Caremap: A Digital Personal Health Record for Complex Care Coordination
Children/Youth With Special Healthcare Needs, Adults With Multiple Chronic Conditions
About this trial
This is an interventional supportive care trial for Children/Youth With Special Healthcare Needs focused on measuring complex care, mobile health, care coordination
Eligibility Criteria
Inclusion criteria for parents/caregivers of children/youth with special health care needs (CYSHCN):
- Adult parent/legal guardian (age 18 or older) of a CYSHCN
- Established care for their child/youth at Duke Pediatrics Primary Care or Duke Children's Cystic Fibrosis clinic (established = one or more completed visits in the past 12 months at the clinic)
- High level of complex medical needs that could benefit from additional care coordination support (determined by clinical provider at the pilot site)
- Primary provider enrolled in the study as a provider participant/clinical provider site champion
- Active Duke MyChart (online EHR patient portal) account
- Full proxy access activated/enabled for parent to the child/youth's medical record in Epic
- Apple iOS device compatible with Caremap app requirements at time of consent
Inclusion criteria for adult patients with multiple chronic conditions (MCC):
- Adult patient (age 18 or older) with MCC
- Established care for the patient at Duke Geriatrics clinic or Duke Pulmonary Transplant clinic (established = one or more completed visits in the past 12 months at the clinic)
- High level of complex medical needs that could benefit from additional care coordination support (determined by clinical provider at the participating clinic site)
- Primary provider enrolled in the study as a provider participant/clinical provider site champion
- Active Duke MyChart (online EHR patient portal) account
- Apple iOS device compatible with Caremap app requirements at time of consent
Inclusion criteria for clinical provider site champions (to participate in interviews and quantitative provider-reported surveys):
- Currently practicing at Duke Health
- Primary site of work is participating clinic site
Exclusion criteria:
- Non-English speaking
- Living in long-term, congregate settings - e.g., living in institutionalized settings such as long-term care facility, nursing/long-term rehab facilities
- Lacks requisite technology to access and use mobile app (e.g., device/tablet/smartphone, home internet, active Epic MyChart account)
- Lack of decision-making capacity (clinician-determined; e.g., patients with advanced dementia)
Sites / Locations
- Duke University
Arms of the Study
Arm 1
Arm 2
Experimental
Experimental
Clinical Providers
Parent/Caregivers
Clinical provider site champions will be invited to participate in web-based quantitative surveys and a semi-structured interview
Patient and parent/caregiver subjects from the participating clinic sites will be enrolled. These participants are all adults - parents or caregivers of children and youth with special health care needs (CYSHCN) and adult patients with multiple chronic conditions (MCC) who are already receiving care at Duke Health.