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As part of OHT week, which ran the week of May 11th, OHT volunteers Bea Deere and Laura Sobola ran a Twitter Takeover which covered the challenges around data
ethics. We've recapped the discussion and links from #CoronaEthics
The Twitter Takeover aimed to discuss how COVID-19 has reframed the health ethics debate. Do the values of privacy, safety and health hold a different meaning to us now? Three key topics were covered:
Data Stewardship
Invisible People
Maker Tech
Data Stewardship
So to get us started with our conversation on ethical challenges during the coronavirus pandemic, we wanted to talk about data. What strategies have been used to fight COVID19? What are some of the ethical considerations? How can we move onwards with an inclusive and safe data stewardship approach?
Data has been one of the most important tools in our efforts to understand and mitigate COVID19. It has helped to shape the policy and laws to respond to the crisis, as well as guiding the science towards potential cures and vaccines. The way we understand data stewardship, is as a (unwritten) framework for ethics, security and purpose of data gathering and analytics, made unique by the nature of this fast-evolving global health emergency, where new facts are gathered every day.
The data strategies to deal with the COVID-19 crisis have been different in nearly every country and region of the world. However, most of them have included the same components:
Analytics
Modelling
Testing
Symptom checking
Contact tracing
Immunity passports
As the countries and companies race to produce quick and safe solutions to control the disease while keeping semblance of normality, it can be easy to overlook existing biases and potential security and privacy issues. The road ahead might be paved through wider collaboration between various agencies and governments or it may also be a constellation of decentralised solutions, but in all cases there will be some hard questions that should be answered as soon as possible.
Some of the key questions to ask ourselves are, which technical and data solutions are most effective in controlling the virus? How should governments, not-for-profits and private sector collaborate to deliver these solutions? And how can we ensure that no one is left behind?
As was previously highlighted, countries are using different data-driven methods to monitor social distancing and spread of coronavirus, however, it all depends on public trust and adoption rates. We polled Tweeps about what the biggest consideration in developing solutions that have the potential to use personal or medical data to fight COVID-19 should be. Here's what they said:
However, we also wanted to take this opportunity and think about the future of health data: Data sharing, ownership and the associated ethical challenges. Such discussions, while important now, will have a tremendous impact after the COVID-19 crisis. Individuals are more willing to take the responsibility of their medical data in their own hands, as shown by the rise of Personal Health Records or even discovery platforms where data can be monetized and shared with others such as researchers.
Understanding of the value of health data is growing and there have been suggestions that sharing health data for public good could be considered an individual's duty, however, it should not be done without proper legal and procedural safeguards in place. There are several ways health data can be currently shared from formal medical research and exchange of notes between doctors to uploads of genetic and sports wearable data to a variety of platforms. They carry different risks, but they need to answer the same questions:
Who owns the data? Are the current protections fit for purpose in the rapidly evolving field? What education is needed for individuals and healthcare professionals? Tweeps were invited to challenge whether these were even the right questions to be asking.
Invisible People
Next the Twitter Takeover covered how COVID-19 has changed our attitude towards each other and our health. We also looked at the effects of inequalities on different groups of people.
On a positive note, we have seen a great wave of appreciation towards key workers such as nurses, carers, supermarket employees, delivery drivers and teachers. We have collectively agreed that every life is important and we must do what we can to protect others. However, similarly to other crises, is exacerbating and exposing a wide array of inequalities at a global scale. Age, race, socioeconomic standing and gender were only few of the factors that could determine how an individual would be affected by the disease and lockdown.
The needs of those who are technically isolated, disabled or have mental health issues can be missed when the streets are empty and hospitals overflowing. Effort to alleviate the strain of social distancing must be inclusive and able to reach anyone who needs help. This means that both social and medical realities of different communities must be considered whenever a new solution is proposed - whether technical or not.
Maker Tech
Last but not least, the Twitter Takeover covered Maker Tech, which refers to the wonderful DIY gadgets - from arts & crafts to electronics & robots - available open-source for anyone to make. We have seen an explosion of examples during the outbreak. The speed and ingenuity of the response of the maker community has been incredible
As an OHT favourite, we loved seeing Steven's ingenious hands free handwashing station in Kenya.
The maker community have been plugging the PPE gap for frontline workers - creating 3D-printed visors and home-made masks. This infographic below shows a comparison between cotton blend and surgical masks, but the compromise in effectiveness.
A quick and dirty look at the graph suggests that two-ply cotton offers best breathability/protection ratio. Might an addition be for those who have a cotton mask with a filter pocket for non-woven filters be helped by adding a dried wet wipe?
We also discussed legal challenges around Maker Tech. What about liability, intellectual property, the regulations the govern the design and manufacture of PPE? Are these being followed? Do they matter when there is such a great need? We received a response from a lawyer on Twitter saying:
It's very generous of people to help out but if the things they are doing don't really help (or worse, do more harm) then that is not helping anyone. In my opinion laws should not be relaxed to support a below par service for PPE or anything really #coronaethics#OHTweek
And that's a wrap! Continue the conversation at #CoronaEthics