Updates to OnCore demographics May 2021
Several changes have been made to the OnCore race and ethnicity fields to better capture subject demographics and provide greater detail in reporting. Updates include addition of new value, and changes to our demographics interface with APeX. Moving forward, UCSF study teams should update/maintain subject demographics in APeX. The demographics interface will update OnCore according to the mappings on page 2.
- New Ethnicity value: “Not reported”
The new value “Not reported” represents the “Declined” value in APeX, which can describe a patient that does not want to answer, does not know the answer, or does not understand the question. “Not reported” is used in OnCore because this is the value used to report to NIH.
OnCore ethnicity field
- New Race values: “Not reported” and “Other”
The new value “Not reported” represents the “Declined” value in APeX, which can describe a patient that does not want to answer, does not know the answer, or does not understand the question. “Not reported” is used in OnCore because this is the value used to report to NIH.
The new value “Other” is used when a patient self-identifies with a race other than those given in APeX.
OnCore race field
- Multiple races now received from APeX
Subjects with multiple races in APeX now have all race values sent to OnCore (previously only the first value was sent). For subjects registered to OnCore protocols, the new race values will auto-populate when new demographics data is received from APeX (see #4 below). For patients not yet registered to any OnCore protocols, each of their race values from APeX should appear as checked/selected under the Subject Details during Subject Registration.
- Enable ongoing updates to race and ethnicity
By enabling ongoing updates to subject race and ethnicity via the demographics interface, OnCore subject race and ethnicities will change over time to match the values in APeX. The updates will help resolve a high number of unknown race and ethnicity values in OnCore for which the values are known in APeX. The ongoing updates will also overwrite some known race and ethnicity values in OnCore, matching these to the data in APeX. Moving forward, changes to race/ethnicity in OnCore must be done in APeX first. If a change is not made in APeX, then the demographics in OnCore will be overwritten by the data coming from APeX, undoing the intended change. Updates can be made by way of patient encounter Additional Information Other Demographics form. Changes to a subject’s demographics in APeX should automatically send a message to OnCore with the new values.
OnCore Race and Ethnicity mapping with APeX
|
APeX Race |
OnCore Race (mapped) |
|
American Indian or Alaska Native |
American Indian or Alaska Native |
|
Asian |
Asian |
|
Black or African American |
Black or African American |
|
Native Hawaiian or Other Pacific Islander |
Native Hawaiian or Other Pacific Islander |
|
Native Hawaiian |
Native Hawaiian or Other Pacific Islander |
|
Other Pacific Islander |
Native Hawaiian or Other Pacific Islander |
|
White or Caucasian |
White |
|
Declined |
Not reported |
|
Other |
Other |
|
Unknown |
Unknown |
|
No value selected/null |
Not mapped, manually select in OnCore and add to APeX |
Multiple race values selected in APeX are mapped to values in OnCore using above table.
|
APeX Ethnicity (Hispanic/Latino Y/N; Ethnic Group) |
OnCore Ethnicity (mapped) |
|
Hispanic or Latino |
Hispanic or Latino |
|
Not Hispanic or Latino |
Non-Hispanic |
|
Declined |
Not reported |
|
Unknown |
Unknown |
|
No value selected/null |
Not mapped, manually select in OnCore and add to APeX |
Self-identified race and ethnicity questions collected at UCSF Medical Centers
Data collected based on California PRIME REAL SO/GI requirements (granular Race, Ethnicity and Language, and Sexual Orientation/Gender Identity data). Follow Medical Center and department scripts when collecting demographics.
APeX encounter Additional Information (Other Demographics) form
- Staff responsible for admission, registration and/or scheduling complete the Hispanic/Latino Y/N, Ethnicity, Race, State of Birth and Country of Birth fields for all patients at registration per UCSF Medical Center requirements.
Common questions on the OnCore-APeX demographics interface.
- Which way does the data flow?
Patient demographic data are sent from APeX to OnCore. No demographic data are sent from OnCore to APeX.
- Where should demographics be updated, OnCore or APeX?
For UCSF patients on studies in OnCore their demographics must be updated in APeX and will be sent across to OnCore via the demographics interface.
- When is data sent to OnCore?
Data gets sent as result of patient activity such as admission, transfer, registration, or updates to patient records.
- How are OnCore subjects linked to APeX patient records?
Subjects in OnCore are matched to their APeX record using the Subject MRN field, called UCSF MRN in APeX. A patient’s UCSF MRN should be entered into Subject MRN field when creating new subject registration in OnCore. The additional identifier BCHO MRN can also be used to find subjects from Register Subject screen, but only the UCSF MRN should be saved into Subject MRN field in OnCore.
- When does demographic data enter OnCore?
During subject registration, if a patient is new in OnCore then the demographic data from APeX is made available via Find Subject module on Register Subject screen.
- What happens if APeX demographics are updated (ex: change in name, address)
The updated demographics are sent as usual as result of patient activity, and if a subject MRN in OnCore matches the demographics data from APeX then the updates are flagged and migrated into OnCore overnight.
- How can I tell if demographics have been updated using data from APeX?
Study teams can view the audit trail for subject demographic data from Subject Console > Demographics page and clicking History button on top right. Data received from APeX is shown as updated by HL7_USER.
- What demographic data is updated?
Data sent to OnCore include Name, DOB, Race, Ethnicity, Gender, Contact Info, and Expired date. Name, DOB, Race, Ethnicity, Gender, Contact Info and Expired date may be updated based on changes to data in APeX.
- Who can access the patient demographics?
Only UCSF (East and West bay) study teams can access UCSF patient demographics; affiliate users and non-UCSF study sites are blocked.
