[Petition] We Call for Open Anonymized Medical Data on COVID-19 and Aging-Related Risk Factors

post by avturchin · 2020-03-23T21:44:34.072Z · score: 6 (1 votes) · LW · GW · None comments


  For what we need open data? 
  The main problems here are:
  What other types of data are important for dealing with coronavirus?
  References and examples
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We, on behalf of Open Longevity, together with the International Longevity Alliance, wrote a letter to WHO about the need for open anonymized medical data on patients with COVID-19 and the risk factors associated with aging. If WHO listens to us, this will accelerate the development of therapies against coronaviruses and against risk factors, and help fight future epidemics. The letter was signed by scientists from the USA, Europe, Israel and Russia, as well as longevity activists.

We are confident that WHO is now receiving a lot of requests and our letter will be lost in the information noise if we do not make additional efforts to promote it. Therefore, we have prepared a petition to be signed by anyone, who agrees with us http://chng.it/cLwkxSsP

If the arguments presented in the petition seem reasonable to you, please sign it. Repost, send it to your friends directly. This will help fight coronavirus.

What kind of data are we requesting from WHO? Medical data: medical history, blood tests, x-ray, etc. (for example [1]). And the thing is that WHO does not want to share! Here’s what they state [2]:

“In accordance with Article 11(4) of the IHR (2005), WHO will not make the Anonymized-COVID-19 Data generally available to other State Parties until such time as any of the conditions set forth in paragraph 2 of such Article 11 are first met and following consultation with affected countries.

Pursuant to that same Article 11, WHO will not make Anonymized -COVID-19 data available to the public, unless and until Anonymized -COVID-19 data has already been made available to State Parties, and provided that other information about the -COVID-19 epidemic has already become publicly available and there is a need for the dissemination of authoritative and independent information.”

For what we need open data?

However, open medical data, simply speaking, medical history (of course, anonymized, without names and surnames), is needed to:

These were reasons for medical data to be useful today. But there are a number of other reasons, which are associated with future research, with preventive measures. But not only in the future: all this may come in handy, since the solution to the problem of high mortality in older ages may lie in the field of aging biology. This way, medical data is also needed for:

The main problems here are:

a) Local storage. Each national system (and sometimes even each medical facility) stores patient data in its own format with its own access rules. Data transfer from hospital to hospital or from country to country is difficult. Testing protocols are also local.

b) At the discretion of a particular researcher in accordance with the recommendations of regulatory authorities, only part of the data is made available to other scientists.

The prerequisites for these problems’ solutions have long been known: cloud storage, anonymization and de-identification technologies, and blockchain for secure and controlled access. Also now is exactly the moment, when the difficulties in standardizing formats can be effectively solved, when many people are ready to get involved in activities that contribute to a quick exit from a critical situation.

Many countries are currently attracting volunteers to help doctors treat patients with COVID-19. However, a huge number of bioinformatics and IT specialists can be no less useful in this situation. Creation of a prototype of a global patient database and the local involvement of one or two IT specialists in a hospital can help quickly, efficiently and relatively inexpensively (with the help of volunteers) collect data in a standardized format for subsequent analysis by the best scientists and AI algorithms around the world.

By allowing access to all types of anonymized or unidentifiable data now, using patient data from COVID-19 as an example, WHO can significantly accelerate the development of vaccines and treatment protocols. In addition, the current situation can serve as a tremendous impetus for optimizing the entire system of working with medical data, allowing us to develop an algorithm for the exchange and standardization of data on an international scale.

What other types of data are important for dealing with coronavirus?

Existing initiatives, including Kaggle Challenges [14], do not solve the problem of collecting and forming medical COVID-19 datasets and are focused on other tasks (training NLP systems on the texts about coronavirus, analysis of genomes, predicting the spread of the virus, etc.).

The idea is to find ways to significantly reduce the mortality rate from COVID-19 by influencing risk factors. IL-6 is an example of a promising risk factor target.
Sign the petition! The World Health Organization is obliged to both share their existing medical data, and to organize the work on obtaining new qualitative data. Contribute to our common cause—the fight against death.

References and examples

1. https://github.com/…/covid-chestxray…/blob/master/README.md…
2. https://www.who.int/…/technical-guidan…/early-investigations
3. https://www.who.int/csr/ihr/WHA58-en.pdf
4. https://qbrc.swmed.edu/projects/2019ncov_immuneviewer/, https://www.ncbi.nlm.nih.gov/genbank/sars-cov-2-seqs/, https://www.kaggle.com/pa…/repository-of-coronavirus-genomes
5. https://www.medrxiv.org/conte…/10.1101/2020.02.23.20026690v1
6. https://www.antibodysociety.org/covid-19-demands-increased…/
7. https://www.360dx.com/coronavirus-test-tracker-launched-cov…
8. https://sph.nus.edu.sg/…/COVID-19-Science-Report-Diagnostic…
9. https://coronavirus.jhu.edu/map.html, https://ncov2019.live/, https://www.worldometers.info/coronavirus/
10. https://www.kaggle.com/c/covid19-global-forecasting-week-1
11. https://www.who.int/emergen…/diseases/novel-coronavirus-2019
12. https://figshare.com/…/Dimensions_COVID-19_publi…/11961063/6
13. https://connect.biorxiv.org/relate/content/181
14. https://www.kaggle.com/tags/covid19

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