Description:

Introduction

I am a practicing medial doctor, a Pediatric Orthopaedic Surgeon. We specialize in treating children with bone, joint and spine diseases. This includes a vast array of birth defects, genetic disease affecting skeleton, spine disorders, sports injuries and fractures etc ..

Case for our venture - A deficit area in medical research

Assessing the effect of our care on this treatment group is a challenge and effective research is difficult in India given the disparity of care in urban and rural settings leading to poor collection of data for any meaningful analysis. A surgeon, even if he/she is a willing reserarcher does not have the wherewithal - both money and staff to conduct meaningful medical research. The surgeon may be practicing in multiple centres, some large, some very small and maybe in rural or far flung areas. All this brings unique challenges to conduct research.

India, should be the leader of the pack given the large population with various health diseases. Unfortunately the above said issues mar the collection of data leading to poor research studies.

Current Situation

Most large centers in India which take part in registries use an off the shelf product maintained and manned by other organisations, mostly in foreign nations. This puts us at a disadvantage as our data is sent to their servers for storing and usage. Eventhough the usage of the data is after our permission, the platform is not under our control. The study question and the methodology are all formulated elsewhere.

Given the size of qualified medical population in India, this is clearly not a satisfactory situation. We should be able to lead the medical research in our country and be self-sufficient.

Our Solution - A centralised multicenter, multiuser National Disease Registry

We are trying to solve this issue by centralising the collection of data and encouraging individual practitioners in rural and urban settings; both in large private hospitals, tertiary referral centres and small clinics a research platform for centralised upload of data.

We built this Pediatric Orthopaedic Disease Registry Framework ( PRF herein after ) using Django 4.x, Javascript (VueJS 3.x), Bootstrap 4.x. This uses a PostgreSQL database.

This gives India a central, National disease registry for Paediatric Orthopaedics which enables role based authentication, privacy protection using encryption, descriptive statistics and charts/plots using python packages. An unique feature which we have incorporated into this is the ability of a surgeon to participate in this National Registry from multiple centers. It is quite common in India for a surgeon to be practicing in various small hospitals. We want to encourage the researcher in all willing participants so that their data can be used for analysis.

Summary of my talk

We present our experience in setting up and starting out with our home grown National Disease Registry using Python technology. It is our humble attempt at data and platform sufficiency in Indian medical research.

Prerequisites:

Python Django Javascript ( vannila JS and Vue JS )

Video URL:

https://drive.google.com/file/d/1NcSDSn6littmPtvdsRWchAvGuq0tau4l/view?usp=drivesdk

Content URLs:

1. https://github.com/dreaswar/posi_registry ( this repo is private)
2. https://docs.google.com/presentation/d/1YrlxEen6AJgAPg6bQNgNw0JKIk5sXDSMwh4Qesl9KNw/edit?usp=sharing ( presentation describing the POSI registry framework )

Speaker Info:

I am a self trained developer. I am also a fulltime practicing Paediatric Orthopaedic and Spine surgeon. I have been programming for past 20 years - mostly for self use projects.

My Electronic Medical Records projects , AuShadha, is open source and is on Github. I was also invited for a talk on this project at PySangamam at Chennai.

Currently I am the lead developer of the National Paediatric Orthopaedic Disease Registry of Paediatric Orthopaedic Society of India. We have launched our National Disease Regisry this year and is in the process of being implemented to wider audience.

I also am a BS Datascience and Programming graduate student at IIT Madras.

Speaker Links:

1. https://dreaswar.com
2. https://x.com/childortho
3. https://github.com/dreaswar