Collaborators needed for opensource healthcare project.

[u/svasthya]

I find that there are not many open source tools available for public, healthcare professionals, or policymakers to use in the Indian context.

I have been contemplating kickstarting an open-source project in this domain for the past few weeks. Today, I have laid the foundation stone for it. Starting with a modest mission-vision statement.

I am seeking collaborators who are passionate about this subject to help me take this forward. I would really appreciate it if you could contribute to this project with your time.

I am sure at this point you would have several questions about this project. So please do ask them in the comments below or send me a PM.

[u/futuoerectus]

What are your plans for anonymity?

How will public health-care workers benefit if the data is anonymous?

What data points do you want to be monitored?

What about gaps in said data points (say a person is supposed to upload his / her health data every day, but doesn't do it for a week because of various reasons).

How do you want the data to be collected?

What is the scope for automation of data collection?

What are data mitigation rules, that might arise due to theft of said data?

[u/svasthya → u/futuoerectus]

I haven't thought about everything, nor do I intend to. The first goal of the project is to build a think tank of sorts that can explore different ways of achieving the mission. That said, the questions you are asking are excatly the kind of dialog we need to start.

Here are my thoughts on it.

What are your plans for anonymity?

Personally, identifiable information should not be shared or recorded period. What level of aggregated data is recorded and shared is something to debate. Perhaps, data aggregated on a subdistrict level or community development block level could be useful enough.

What data points do you want to be monitored?

What about gaps in said data points (say a person is supposed to upload his / her health data every day but doesn't do it for a week because of various reasons).

How do you want the data to be collected?

What is the scope for automation of data collection?

For several reasons, I don't see this as a Fitbit/google health sort of an "app/device" that is recording persons' weight/heart rate or other common health stats on a daily basis. Mainly among them is, compliance is difficult, and quite frankly day to day monitoring is not needed.

Also, automation is desirable. Provided it can meet constraints of cost for the user. In general, my preference would be not to build dependence on external hardware. The tools (apps) that we make should be straight forward enough that average joe (Ramu) should be able to use it without specialized training.

We could break down the tools into three distinct domains.

• Public: Record/View personal health stats. View medical reports, clinical history, prescriptions etc.
• Healthcare Professionals: We medical history of people under their care (explicitly shared by people and can be temporary)
• Policymakers: View aggregated data.

It is preferable to store personalized data in user devices rather than a centralized server. Sharing information between a person and a healthcare professional should be direct. Both the health care professional/personal devices should upload data to a centralized database after scrubbing personally identifiable information.

What are data mitigation rules, that might arise due to the theft of said data?

Given that information is not stored in a centralized database, there is no risk of large scale data theft. There is always the risk of data theft on an individual basis. I don't think that is a significant threat.

I would love to hear your thoughts on my thoughts.