An electronic health record (EHR) is a digital version of your medical record. It may include information such as diagnoses, medications, laboratory results, procedures, clinic visits, hospitalizations, and other healthcare information documented by your healthcare providers.
EHR data may include information that is directly related to hyperinsulinism (HI) as well as information that is not directly related to HI. Collecting a broad range of health information is important because, when data from many people with HI are analyzed together, researchers may identify patterns that suggest certain health conditions occur more often in people with HI than is currently recognized.
Most of the information HIGR receives from the EHR is organized into categories (listed below), and only limited data is collected within each category. This data is organized in a way that makes it easier to analyze for research purposes. When sharing your EHR data with HIGR, you may choose not to share information from any category. Examples of the types of data that may be collected within each category are provided below; however, not every EHR contains every type of information listed.
Categories of EHR Data:
Medicines: May include medications directly related to HI treatment (e.g. diazoxide, octreotide, lanreotide, glucagon) and medications for reasons that are not directly related to HI. Medication data may include medication name, dosage, form, frequency, status (active or stopped), special instructions, and prescription date.
Conditions: May include conditions directly related to HI (e.g. hyperinsulinism, hypoglycemia) and conditions not necessarily related to HI. Data collected about conditions may include condition name, diagnosis date, and end date.
Treatments and Therapies: Data collected about treatments and therapies may include treatment/therapy name, start date, and end date.
Procedures: May include procedures such as surgeries, electrocardiogram, hearing test, etc. Data collected about procedures may include procedure name and date.
Labs and Tests: May include laboratory test results such as blood glucose, insulin levels, beta hydroxybutyrate, complete blood counts, liver function tests, etc. Data collected on laboratory test results include test name, result, and date.
Encounters: May include basic information about encounters with the health care system, such as office visits, hospitalizations, urgent care visits, phone calls, portal messages, etc. Data collected on encounters may include type of encounter, start date, end date, and reason for encounter.
Vitals: May include measurements such as height, weight, blood pressure, pulse, etc. Data collected on vitals may include measurement name, value, and date.
Allergies: Data collected about allergies may include what the participant is allergic to, the type of reaction, and the date of the record.
Vaccinations: Data collected about vaccinations may include the vaccine name and the date it was received.
Some EHR data is not organized into these categories. Additional documents may be sent to HIGR when you share your EHR (unless you specify not to share Documents). Documents are the only category of data that are not structured for data analysis yet. Additional processing will be required to use data from documents in future research projects.
Documents: A wide range of documents may be shared, such as imaging reports, physician notes, external test results sent to your doctor, etc.
