Health-Care Data Exchange in the times of Coronavirus (COVID-19) – and the elephant in the room
This small article was written on 2020-04-13 when the total confirmed cases were at 1,883,000 and the death toll on New York City alone was above the number of deths in Iran. There are several questions which did not let me sleep very well these days.
First of all, I am gracious for living in a place that handles the pandemic in a sensible way. Case-fatality ratio n Germany according to the Johns Hopkins University dashboard is around 2.37% in Germany and 4.43% in Switzerland.
Family members have had a look at the fatalities in South American countries, and, for example Ecuador has seen people falling dead on the street and bodies lying around for days without being taken care of due to a complete lack of reserves and ability action any plan.
At the moment of seeing these photos, one possible scenario is inevitable to take into consideration: When all the world is focusing on one particular, extremely emotional event, the odds for some actors taking swiftly up on the opportunity to push through their agenda, without a lot of ado and without the wworld taking notice. Bombing Yemen? Occupying some part of Syria? Or even invasion of a COVID-stricken country? Whatever may happen on a global scale is also an issue on a local scale: What happens to the barriers in place to stop over-zealous scrutiny on private data, such as location-data? Gone with the wind, as everyone feels glad to contribute their data in the hope to know early enough if in contact with an infected person to take measures, right?
Nevertheless, there are some things that should be done quickly and have not been pushed forward, not for lack of good intentions, but because of the resources needed. Here’s the use case: If you are GP or clinical doctor, and are looking for the best treatment internationally, there are some resources available, thanks to the international community:
Check out the dataset of Johns Hopkins on Github: https://github.com/CSSEGISandData/COVID-19/tree/master/csse_covid_19_data or subsets at https://data.humdata.org/dataset/novel-coronavirus-2019-ncov-cases
Intelligence as a service platform Trufactor share their data on how inter-state mobility changes by target groups on AWS for free.
IHME (Institue for Health Metrics and Evaluation) have shared their listing, containing COVID-19 projections for countries in the European Economic Area (EEA). Projections are at the subnational level for three locations in the EEA: Germany, Italy and Spain.
X-Mode have some juicy data with high granularity on their geolocation dataset that can be used by universities, researchers, and healthcare institutions (non-profit) for analyzing human movement patterns during the coronavirus (COVID-19) outbreak in the United States:
- Advertiser_id (anonymized)
In the EU, there are some additional resources available with a slightly different focus. For example, https://www.covid19-dataexchange.org/, just to name one. To ascertain the right dataset for taking actions on, the list has been extended rather swiftly. Yet, after reconnoitering a next step needs to be taken: Evaluating the different courses of action and deciding which is the one to action on. For example: How effective is the cleaning of roads and what positive effect does the sanitation of public transport have? Does it make a difference if everyone stays confined on their homes or is it okay to let them go out for a stroll or jog? Does it have a positive effect if a populace wears face-masks or not? Is extensive testing all the while a good course of actin in order to go for public health management in the right way?
One way to achieve an evaluation of the right actions may be by looking into the containment measures published here. http://epidemicforecasting.org/ have a simulation by country and the models are used to apply simulations to mitigation-strategies. Quite some good way to take an educated decision – and decision makers receive pro-bono consultations on the right course of action.
Maybe, just maybe, the data scientists will have their break-through together with applied AI (pick your flavour).
Knowing that a lot of the criticality of the virus is due to its genetic strains, sharing information on the genetics will help to draft strategies or develop vaccines and medication. Sites like GISAID offer the opportunity to share genetic data. Nextstrain.org is providing a wealth of information and are incorporating nCoV genomes as soon as they are shared and provide analyses and situation reports. However, the issue is the peer-review:
“For example, Christian Drosten, the virologist at the Charité University Hospital in Berlin who sequenced the Munich strain, spotted the similarities between the German and Italian strains last month and wrote on Twitter that it was “not sufficient to claim a link between Munich and Italy.” It’s possible that the strain arrived in both Munich and Italy from the same outside source, Drosten noted.”
Now the real challenge comes with a lack of data exchange which is quite an obvious one, in fact: Wouldn’t it be great to have access to the full data-set of the health-records and outpatient records of infected individuals?
“The pandemic has shattered our common beliefs about the type and scope of health information exchange (HIE),” wrote Yaraghi. “It has shown us that the definition of health data should no longer be limited to medical data of patients and instead should encompass a much wider variety of data types from individuals’ online and offline activity. Moreover, the pandemic has proven that healthcare is not local.”
Digitalization is a must in a situation like the COVID-19 pandemic. Exchanging healthcare records (while honouring the privacy rights of patients) should be the new normal, but alas, that’s a big challenge as many healthcare provides still don’t make good use of the interconnection e.g. the IHE have since quite a while propagated. Their (unspectacular) website hides more than it boasts the capabilities their members have in making available the healthcare data globally that is the required granularity for any data swcientist taking out actionable recommendations: All the variables which are essential in making good choices for the individual or an organization or even a nation-state could be had on a global scale.
Grapevine World has been established 2017 with the clear goal to enable public health management, insurance companies, teaching hospitals, general practitioners and clinics telecommunication carriers and researchers as well as pharmaceutical forerunners work hand in hand to arrive at the best scientific solutions to problems like the current pandemic, but not limited to this – there are many additional use cases a global health-record backbone can have.