The Pakistan Children's Heart Foundation (PCHF) was founded in Lahore in 2011 by a parent in memory of a child lost to congenital heart disease. PCHF is a charitable organization working to improve congenital heart disease (CHD) patient welfare by providing funding, building surgical capacity, raising awareness, and working with government. Since our founding we have raised more than three million dollars and helped more than 930 children receive needed heart surgery.
High quality surgical care requires real-time data to inform anesthesia and other treatment decisions. Many of the state-owned hospital facilities in low- and middle-income countries (LMIC), did not use an electronic health record (EHR), and data collection was minimal. In response, PCHF funded and produced a mobile data app to allow healthcare professionals to record information using a mobile application. In it, we are able to collect not only clinical data, but also the data about how much time an operating theatre is busy and what time which procedure is performed, allowing scheduling of specialized surgeons.
Although initially designed for CHD usage, PCHF partnered with government to expand use of this technology throughout Pakistan. Over 13,000 operations were captured and for the first time, meaningful, time-sensitive data regarding type of surgery, anesthesia and its complications became available to the hospital and healthcare workers. It had a direct impact on preparedness for surgical care at the childrens' hospital and was used to guide a surgical expansion.
Collection and analysis of electronic healthcare data in LMIC remains a challenge. A privately-funded lead organization thinking outside the box has achieved collection of data which is useful for research, and this model can be replicated in other LMIC countries. Installed by 1152 users: Pakistan: 294, India: 155, USA: 73, Egypt: 42 and Germany: 27. Staff in a total of 10 different hospitals are using this app.
Patient or healthcare consumer involvement:
The abstract describes research-promotion activities by a consumer-led organization; the presenting author is the parent of a child born with congenital heart disease. Screen shots attached.