posted on Wed, Oct 30 '19 under tags: code, free-culture, health, research

Imagine if you had granular data about health at your fingerprints the way you can look up a movie info on IMDB or a fact on wikipedia. Imagine being able to engage with and contribute to that dataset. Imagine how powerful our public health professionals would be with that kind of a tool.

Like oil and gold, data is worthless if it is under the soil. This is especiallly true in public health where a lot of data is collected and/or generated, but rarely processed, collated, and analyzed. Where is the problem?

Problems

Data collection has to be with a vision that includes collation and analysis. If the collection is not designed with the future needs in mind, using that data for any useful collation/analysis will require significant effort.

Small amounts of data “protected” in silos are useful individually. But they are much more useful when combined together. Combining data this way requires coordination. Coordination requires collaboration. Collaboration requires trust and respect. That requires cultural shifts in ways of thinking.

Collated data has to be stored without loss of information. Data structures required to store health data can easily become too complex. Higher the complexity, more difficult it becomes for every other step.

Data needs to be accessible to people who want it. The right questions to ask addressing the data may come from people who are living in unknown corners of the world. It would be arrogant to think that any private collaboration will have enough people who can ask all the possible questions. Accessibility should also be in terms of portable, standard data formats.

Open access to data needs to be combined with access to the tools required to understand/analyze that data. Tutorials and learning resources are necessary to help enable people from diverse backgrounds to engage with the data.

Access is incomplete without access to add/edit. Read-only access creates a class system under the assumption that “we know better”.

Background

There are initiatives like data.gov.in which try to solve parts of this problem. There is a similar dashboard for Andhra Pradesh. But these fall short in their imagination in addressing the other problems I mentioned above.

DHIS 2 is a software that solves many more problems related to collection, visualization, and collation. Play with demos here. And it is in fact used very successfully by countries all over the world. But DHIS instances have to be configured in a top-down approach and democratizing that is not easy. It may do well enough if we knew all the questions before-hand. But I mentioned this before, no private team can know all the questions. (Aside: The RTI Act could have just been “proactively disclose all the data that are useful to the citizens.” There is a reason why citizens should be able to ask questions.)

There are incredible amount of tools and resources built around data. Pure data. If Archimedes were alive today, they would have said “Give me data with the columns I ask for and the software to analyze these, I shall move the world”. What is required at this point is thought leadership to create a platform that helps everyone move the world.

Future

If such a platform is built where anyone can ask a complex query and get access to the exact data they want, what people may build with that is limited only by imagination.

I can imagine people building 3D visualizations in mixed reality, making informed choices, creating informed health policies, collecting and analyzing data to answer their own questions, and so on. What can you imagine? Let me know.