Toward a New Era of Data Sharing Summary of the US-UK Scientific Forum on Researcher Access to Data (2024) / Chapter Skim
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3 Accessing and Sharing Health Data
3 Accessing and Sharing Health Data
Pages 20-26
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From page 20... ...
In order to effectively respond to the situation, every medical institution must thoroughly investigate and provide the statistics of patients suffering from pneumonia of unknown cause and exhibiting similar characteristics that you have treated in the past week." Within 11 minutes of its release, the notice was leaked and spread throughout Chinese social media. Later that day, a free email service, which had previously spotted outbreaks of Middle East Respiratory Syndrome, the Zika virus, and the Ebola virus, broke the news to the wider world.
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From page 21... ...
adults said in 2023 that it is definitely or probably true that the COVID-19 virus originated from a lab in China, up from about half in 2020.3 "We've taken our eye off the real threat, which is the interface between wildlife that carry these viruses and humans in big cities." If the data had been shared more recently, Worobey said, "this pattern would have looked very different." Using Health Data While Protecting Privacy OpenSAFELY is a secure platform for analyzing the primary care records collated, updated, and used by general practitioners in the United Kingdom's National Health Service. But "that's underselling what it is we have," said Pete Stokes, director of platform development at the University of Oxford's Bennett Institute for Applied Data Science.
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From page 22... ...
The site has public logs that show who is running code at any given time along with the details of their projects. "Everything is transparent, which helps build public trust and ensure proper and ethical use of data." Federated analytics also have benefits; medical records are stored by two different companies in the United Kingdom, and the code can be run against each of the datasets and the results compared.
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From page 23... ...
Also, in epidemics in general, some of the key data require individuals to be identifiable in order to make links -- for example, in contact tracing. The West African Ebola epidemic from 2013 to 2016 was an example of an epidemic that prompted ongoing public debates about the ethical, practical, and scientific implications of wide data access.
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From page 24... ...
One way Donnelly has done this in her work has been to involve advisory panels that include not just academics but also community members who can see and understand the processes involved in gathering and protecting data and provide input to these processes. Stokes agreed, pointing out that the law in the United Kingdom gives authorities the right to release some kinds of data if they judge that such a release would serve the public interest.
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From page 25... ...
• hile common standards upon which everyone agreed would be desirable, various complications can W make this goal ethically difficult to achieve. For example, the significance of race and ethnicity can vary by context, people can be more or less sensitive about particular kinds of data, contested boundaries in data definitions can be difficult to establish, and the existence of incentives in such areas as diagnosis reimbursement models can make standards difficult to transfer from one context to another.
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From page 26... ...
• Retaining the trust of the public is imperative. 26 Toward a New Era of Data Sharing
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