Thalassemia is a genetic blood disorder. In the developing world, most children who suffer from Thalassemia do not live to see the age of 18 years let alone leading a normal life in the developing world, inspite of the fact that thalassemia is a disorder which is manageable (and now, even curable). Most individuals suffering from thalassemia do not receive proper and timely management leading to complication which eventually pave the way for untimely death.
Thalassemia requires extensive management. There are well laid out protocols on the triggers for transfusion, choice of blood components, parameters to be monitored, iron chelation, routine investigations, complication prevention and management which are widely available today. For the patients who can afford, treatment and care today is available adequately. Since the person is a patient on chronic transfusions healthcare professionals have to be very careful in maintaining and managing the history of treatment offered to the child in order to make proper decisions on the course of treatment. The treatment is expensive and takes a lot of time of the doctors, nurses, technicians and family.Estimates of the cost of care hover around $2000 per child per year in the developing world.
Sankalp India Foundation is a Bangalore-based non-government organisation. It is a youth organisation working for blood donation, thalassemia and disaster relief. They wanted to build a comprehensive solution for Thalassemia Management. Since we are the technological partners for Sankalp, they approached us for building the software.
ThalCare is a powerful thalassemia management tool which makes the job of managing patients with thalassemia extremely simple and effective for institutions delivering this healthcare. This tool is typically deployed at a day care center where the patients are coming for transfusion. It is single point of storage of all information related to these patients and generates automatic alerts, reports and indicators on the progress and treatment of each patient and the centre as a whole.
ThalCare is one of its kind for providing a comprehensive management for Thalassemia patient. There are currently no tool available on this scale.
There were few key technical requirement to be met:
- Provide visually indicative interface. One look at the patient page or any of the tests related data should be enough to intuitively guide the user.
- Support for content editors for easy data management. With huge data entry for each patient, this was a must.
- Ease of access. Minimal time for learning.
- Site Response. The system should respond to user request in a reasonable time
- Responsive Design. Have two set of design for mobile interface and desktop interface
- Third Party Integration. Allow third party access through well defined APIs
- Generation of multitudes of reports with automatic mailing to stakeholders. Printable templates with patient related data for usage.
- Implementation of guidelines for Thalassemia Management. Implement most of the algorithms possible and provide relevant suggestions.
- Scheduling for transfusion
- Captures the blood components which are given to the child
- Estimates the volume of blood that should be transfused based upon the pre transfusion hemoglobin and weight
- Keeps track of the freshness of the blood that is supplied to tha patients
- Allows tracking of the variation of hemoglobin with time graphically
- Captures and indicates any reactions that are triggered by transfusions
- Allowing early detection and warning for abnormal antibodies
- Sets of automatic indicators for need for ferritin tests
- Tracks variation in ferritin levels and need to start chelations
- Tracks chelation therapy with dosage and compliance
- Flags off abnormal ferritin and missed chelation
- Sets of indicators for need of various lab investigations after stipulated period of time
- Tracks all related investigations including Hematology, Electrophorosis, Biochemistry, Serology, LFT/RFT, Thyroid Profile, Genetic Evaluation, Radiology and Ultrasonography, HLA typing, ECG etc.
- Flags abnormal results including serological complications
- Maintains tabular and graphical history of variation for each of the tests enabling monitoring care effectively.
- Enables tracking the carrier status of family members
- Enables cascade screening program
- Enables identification of vulnerable couples for counselling and potentially antenatal screening
- Enables growth monitoring through WHO growth charts
- Visually indicates fitness for BMT(Bone Marrow Transplant) using standard criteria for donor as well as sibling
- Enables tracking of family support including travel reimbursement, financial support etc.
- Enables recording and analysis of social profiles for the patients
- Enables tracking on and reporting of incidences, procedures, complications etc.
- Multiple centres can work together in isolation on the same platform
- Patient complication management
- Automatic report mail.
Day Care Centre Management
- Basic Inventory Management and Finance Management
- Evaluation of effectiveness of the transfusion support, chelation support, reactions and lab investigations
- Enables early detection of problems, research and better visualisation of the potential threats.
The deployment of this tool at one of the centres of thalasssemia care run at a private autonomous institution has ensured that within a year the number of patients attending the clinic has trebled even as the doctors, nurses and technicians feel less burdened to proceed with their work.
Awards and Recognitions
- The tool Thalcare has been adjudged "WINNER of Manthan Award Asia Pacific - 2013" under e-Health category.
- The android based patient thalassemia App was adjudged the Second Runner Up in the Novartis Thalassemia App Challenge
- Sankalp India Foundation was declared one of the winners under Thalassemia category.
Drupal Specific Details
The tool is built on Drupal 7. It uses Organic Groups for allowing centres to register and manage their patients in isolation to other centres. Sky theme was used as it was a clean theme and provided most of the responsive features out of the box. The other reason is that we got used to working with Adaptive Theme. Memcache and Entity Cache is used for caching. Highcharts is used for displaying charts for various indicators like Ferretin, Hemoglobin, Growth Charts based on WHO and LIC trends for patients.
ThalCare is multilingual. It currently supports Hindi and English. This was made possible by localization modules available in Drupal.
An android app specifically for Thalassemia patients was built when competing for Novartis App Challenge. The App makes it possible for patients to access their medical records, report problems to the doctor via the app, provides incentives for patients to adhere to medication and bring their relatives for screening and lot more. The App was built using DrupalGap. On the backend the Services and DrupalGap modules are used.
ThalSense, an intelligent engine computes various indicators related to the health of the patient. These indicators are related to Transfusion, Hemoglobin, CBC, Serology and many more for the patient. The system uses a field collection to store each indicator along with the status and details for each patient. These are recomputed whenever relevant form associated to the patient is created or updated. This engine is the most sophisticated and comprehensive aspect of the solution. One glance at the patient page and the system can tell what is currently wrong with the patient. Whenever any affecting parameter is modified relevant indicators are updated for the patient.
- Organic Groups
- Field Collection
- Custom Formatters
- Computed Field
- HTML Mail
- Internationalization Modules
Why these modules/theme/distribution were chosen
Organic Groups: The system originally was created for one centre only. When integration with other centres was required, Organic Groups made it a cakewalk.
Rules: All custom operations that required handling for a specific event was managed using Rules.
Custom Formatters: Heavily used. Different coloring of values for each test report fields based on the range of acceptable values. A tooltip was provided to view the acceptable range when hovering over the value using Tipsy module. Visually indicative.
DrupalGap: Used it with Services to power the android based app also built using DrupalGap.
Panels: Patient Page. Used for displaying all relevant patient related information on a single page.
Quicktabs: Arranging list of patient related reports in tabs and using ajax to load them upon request.
Highcharts: Interactive charts of high quality used for displaying WHO based Growth Charts, Hemoglobin trends and various others.
Localization: Support for multiple languages
Taskbar: Provide easy menu for various roles, links to various reports etc
Print: Various printable form templates to be automatically generated.
Themekey: Switching between themes based on role.
Webform: Feedback :)
Sky: Clean theme. Responsive.
Mobile Jquery Theme: True mobile theme. Used for patient login.