"Sickle cell Mobile Application to Record symptoms via Technology will provide a series of services ranging from:
- symptoms monitoring
- medication adherence
- education and training
- self-health management
The services are being developed with a team of healthcare professionals that care about helping patients monitor and manage their health for better life outcome.
To use the apps, one must contact Nirmish Shah, MD ([email protected]). Dr. Shah is a pediatric and adult hematologist with a primary interest in helping his patients transition to adult care with confidence and competence. Dr. Shahs team of collaborators include IT personnel, nurses, MDs, psychologists, child life specialists, and volunteer patients.
The first installments in the series of services are ITP (Intensive Training Program) and a symptom and interventions monitoring. ITP serves to promote medication adherence in children and adults. Patients receive three series of educational modules and quizzes over 3 months. During those months patients upload a selfie depicting them taking their medication. Patients who complete those three months are asked to simply log that they take their medicine daily for three additional months. After those first six months patients may opt to record taking their medications or not but are continued to be followed until they will have completed one full year in the ITP. The other app is to help patients monitor symptoms and interventions. Patients are asked to make an entry in the morning and in the evening regarding their symptoms, including pain, and any interventions they may have used to maintain or restore health.
Data are uploaded to a secure encrypted HIPAA compliant Citrix Sharefile for Healthcare server. The data on the server is accessible by Dr. Shahs team only. Parents have access to their own childrens data."