In 2008, the book Nudge was published for the first time. Company pension schemes were one of the case studies. The authors research had found many companies would contribute to employee pensions, however employees were required to ‘opt in’. And many did not check that box. Employees were effectively leaving free money on the table. So the authors worked with a few companies to change from ‘opt in’ to ‘opt out’. Unsurprisingly the number of employees with pensions went up. Interestingly, some employees did actually opt out.
Many companies today operate an ‘opt out’ policy for sending you marketing materials, sharing your information with a third party, and so on. And there is rarely any sunset clause in these policies. So if you forget to uncheck the box once, you are spammed for life. Not ideal.
The same happens in the work around COVID-19. Lots of data is being collected. Whether it is for testing, tracing, training, experiments, surveillance, or research, data is being captured. And it is helping. Frontline workers capture the data using solutions provided to their organisations by tech companies. The frontline organisations improving their care and services to the individual by using this data.
However, in many situations the data captured at the frontline is also being aggregated by the tech companies to use how they wish. This is not known to the patients themselves. And there is no sunset clause limiting the aggregate use for a set length of time. In fact, it is only in the fine print of contracts. Sometimes there is an option to ‘opt out’ – allowing your organisation to use the solution but not part of the aggregation. However, in many cases this is not even an option.
There are many reasons for this. Some positive and some more sinister. Currently the onus is on the person and frontline organisation to research and figure out how the aggregate data will be used, who it will be shared with, how long it will stick around, and so on. And most companies don’t make it easy to find answers to any of those questions.
Perhaps it is time we move to ‘opt in’. Perhaps we should be moving to a place where patients, organisations, etc. can opt in to having their data (anonymised or not) added to the aggregated pool. This flips the tables a bit to put the onus on the companies, the researchers, etc. to state why they need your data, what they will do with it, how long they will keep it, and so on.
Maybe the time is now. We’ve waited long enough.