Events/HackCovid/2020-03-28/Group3
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Thema:data anthropology
Discussion
1. Started by public health surveillance, and their ethics and laws. Rules of privacy already allow the state to limit the freedom. Enhanced with digital systems, like asking for digital surveillance. What are limits, etc.
2. Starts from the bottom up, difficult to conceptualise. Not part of standard public health surveillance. If imagine new ecosystem of contributors, not to enhance surveillance. Should they need a framework for themselves beyond the laws.
What's is the driver?
what's are the limits?
Should we need a framework?
- Start with anthropology
whats' the model
resources
how many models?
identify how people are living? How exposed they're?
social points of contagion
what's the implication for ethics?
444 answers from the French version of Questionnaire COVID-19 lifestyles and contagion
Very interesting input specially the supermarket visit .
Personas for design: https://docs.google.com/document/d/16-B-CN652Wm8qeEUB2OATsQwL6JEr6xF1rHPyeHPduE/edit?usp=sharing
11 types of at risk profiles were detected
- kid + single parents
- teenager + student
- single person without children with office job (homeworking)
- doctor in hospital (borderer worker)
- nurse in mobility
- delivery person
- cashier or seller in a supermarket + risky partner
- independent worker
- unemployed person healed from COVID-19
- isolated elder person
- family with home-school
- From the data perspective
summary of the discussion:
1) personas can be helpful as elements in a methodology to analyze the spread of a disease and the risk factors
2) data collaboratives can be used to collect the data needed to build and refine such models
3) at the same time, these data and models generate risks of stigmatization
4) personas can also be helpful as elements in a methodology to analyze the spread of stigmatization risks
5) disease risks and stigmatizations risks are structurally related, as groups at high risk of contagion face higher stigmatization risk, irrespective of other (positive/negative) characteristics
6) additionally, other characteristics (e.g. negatively perceived social traits, e.g. poverty, social deviance) combine with at risk behaviour to generate higher stigmatization risks
Outputs:
1. Categorization of the personas for modeling the drivers of risks of contagion and being stigmatized.
2. Three levels of analysis to the modeling:
- risks of contagion according to the virus and COVID-19 characteristics
- lifestyles factors that would increase the risks of contagion
- ethical issues : stigmatization
3. Use data for public health purpose only
Which data are relevant from the personas for design)
Possible sources of data: potentially portable COVID testing.
An ultrasensitive, rapid, and portable coronavirus SARS-CoV-2 sequence detection method based on CRISPR-Cas12
https://www.biorxiv.org/content/10.1101/2020.02.29.971127v1
[feature 1: degree of risk for themselves, likelihood to get infected] [how to know?]
-> result of a model with a lot of variables
[feature 2: Based on the configuration of the shelter, what are the degree of risk of contaminating others, likelihood to infect others] [how to know?]
variables: shelter configuration, occupation,
[feature 3: typical contagion channels] [how to know?]
variables: transportation, shared facilities, occupation, leisure, food supply, hospital, pharmacy,
[feature 4: easy to detect/contact/trace] [how to know?]
variables: level of education, gender, age, access to tech, awareness, location (urban/suburban/remote), level of trust in government & health system,
[feature 5: risk of harming by detection/contact/tracing ] [how to know?]
variables
two families of stigmatization risks:
A) socially undesired behaviour. e.g., illegal activities, -> have incentive to avoid surveillance -> risk is not intrinsically related to the generation of useful knowledge from an epidemiological point of view -> surveillance can try to mitigate the problem by getting as much information as possible about the disease-related aspects of behaviour, ignoring or masking the non-disease-related aspects of the behavior
B) all groups combining a high degree of risk of contagion with a high risk of contaminating others, based on demographic, lifestyle, occupational characteristics -> stigmatization risk is intrinsic to (and highly correlated with) the generation of useful knowledge from an epidemiological point of view -> surveillance can try to mitigate the problem by a) intervening on the granularity of the description of risk-related phenomena (may be in trade-off with data utility), b) adopting a language that does not revolve around concrete sociological categories keywords: stigmatization, discrimination, group exclusion.
As example, 2 related controversies that have already happened in France
- stigmatization of people living in poor suburb of Paris associating hospital saturation with assuming not respecting the quarantine (press/social media comments)
- stigmatization of health workers (neighbour leaving note on nurses' flat door asking to go live elsewhere)
- police private message group harshly commenting suburban https://www.mediapart.fr/journal/france/280320/confinement-dans-les-quartiers-populaires-attention-aux-controles-sous-tension
twitter exchange https://twitter.com/MariannesNoires/status/1243476777147731968
about this article
https://www.lemonde.fr/planete/article/2020/03/26/il-n-y-a-plus-une-seule-place-de-reanimation-dans-le-93_6034502_3244.html
[feature 6: communication risks, e.g. miscommunication, fear, stigmatization] [how to assess[h] this?]
variables: age, level of education,