Prescribing Social Networking to Adolescent Diabetes Clinic Patients: Advancing Collection of Patient-Centered Data for Care Improvement
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Abstract
Background. Adolescents with Type 1 diabetes are at high risk for problems, non-adherence, and loss-to-follow-up. They are hard to track and treat and high quality information about them is scarce in clinical care settings. Using a social networking software application (SN app) to collect structured information from adolescents with diabetes for aggregation and sharing with their clinicians may provide an opportunity to improve the quality and availability of information about a high risk group to support care improvements without burdening clinicians or interrupting workflows.
Objective. Test the feasibility of engaging adolescents with Type 1 diabetes in using a novel privacy-preserving SN app, available to members of an online international diabetes social network, to collect structured information about their diabetes management and self-care behaviors for aggregate reporting to the clinic. Specific aims are to: 1) validate patient-reported data entered into the app against medical records; and, 2) measure information gain at the point-of-care.
Methods. Enroll and orient to the SN app patients ages 13-25 from the Boston Children’s Hospital Diabetes Program. Using descriptive statistics, measure: 1) concordance between medical records and patient-reported data for measures of diabetes control (HbA1c%), device use, and acute complications; and, 2) information gain related to app use by comparing comprehensiveness of medical records alone and records augmented with app data with respect to care patterns, problems and health behaviors. The main hypotheses are that patient-reported data will be concordant with medical record data for disease measures and app use will augment data available to the clinic from the medical record.
Results. Of 55 enrolled patients, 51% were female and median age was 16 years. Patient-reported data were highly concordant medical records for measures of insulin pump use (100% concordance), continuous glucose monitor use (95% concordance), and past-year severe hypoglycemia (85% concordance). Patient-reported HbA1c% matched the medical record data for 87% subjects; for both data sources the average Hba1c% value was 7.7%.
App data augmented medical record data in areas of substance use and health promoting behaviors, which were infrequently documented in the medical record. Of the 15 respondents reporting alcohol use through the app, 12 (80%) had no mention or a negative report of alcohol use in the notes from their most recent clinic visit. Similar results were seen in reports of tobacco use (3 of 4 reporting use in the app had no mention in the record) and marijuana use (8 of 8 reporting use in the app had no record mention). All participating patients entered information into the app about exercise frequency (noted in 62% of medical records), wearing of diabetic ID (noted in 7% of records), and self-monitoring of blood glucose before driving (noted in the records of 18% of subjects of driving age), filling gaps on these issues.
Conclusions. Patient-reported data from a SN app can augment medical records with valid information about issues not often discussed or documented. Bringing this information to the point of care from complementary patient-centered sources has potential to inform the care team and drive care improvements.
Objective. Test the feasibility of engaging adolescents with Type 1 diabetes in using a novel privacy-preserving SN app, available to members of an online international diabetes social network, to collect structured information about their diabetes management and self-care behaviors for aggregate reporting to the clinic. Specific aims are to: 1) validate patient-reported data entered into the app against medical records; and, 2) measure information gain at the point-of-care.
Methods. Enroll and orient to the SN app patients ages 13-25 from the Boston Children’s Hospital Diabetes Program. Using descriptive statistics, measure: 1) concordance between medical records and patient-reported data for measures of diabetes control (HbA1c%), device use, and acute complications; and, 2) information gain related to app use by comparing comprehensiveness of medical records alone and records augmented with app data with respect to care patterns, problems and health behaviors. The main hypotheses are that patient-reported data will be concordant with medical record data for disease measures and app use will augment data available to the clinic from the medical record.
Results. Of 55 enrolled patients, 51% were female and median age was 16 years. Patient-reported data were highly concordant medical records for measures of insulin pump use (100% concordance), continuous glucose monitor use (95% concordance), and past-year severe hypoglycemia (85% concordance). Patient-reported HbA1c% matched the medical record data for 87% subjects; for both data sources the average Hba1c% value was 7.7%.
App data augmented medical record data in areas of substance use and health promoting behaviors, which were infrequently documented in the medical record. Of the 15 respondents reporting alcohol use through the app, 12 (80%) had no mention or a negative report of alcohol use in the notes from their most recent clinic visit. Similar results were seen in reports of tobacco use (3 of 4 reporting use in the app had no mention in the record) and marijuana use (8 of 8 reporting use in the app had no record mention). All participating patients entered information into the app about exercise frequency (noted in 62% of medical records), wearing of diabetic ID (noted in 7% of records), and self-monitoring of blood glucose before driving (noted in the records of 18% of subjects of driving age), filling gaps on these issues.
Conclusions. Patient-reported data from a SN app can augment medical records with valid information about issues not often discussed or documented. Bringing this information to the point of care from complementary patient-centered sources has potential to inform the care team and drive care improvements.
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