England’s Care.data Fiasco: Open Government Data Done Wrong

Wendy M. Grossman writes on the Tech President web site:

How to destroy public trust in a government open data program in three easy steps:

Step 1: Pick a sector that’s maximally sensitive – say, health care – and plan a program to sell the collected data with the stated purpose of benefiting the public good that conflates personally identifiable data with open data and research purposes with commercial exploitation and to which everyone’s records will be automatically uploaded with no ability to withdraw them later.

Step 2: Publish conflicting, confusing, and incomplete information about it, omitting details such as deadlines, forms, and processes for opting out.

Step 3: There is no step three!

This is how the UK government has (so far) mishandled a program called care.data. Given the power to do so in legislation passed in 2012, the governing health authority ordered care.data into being at the end of 2013, and distributed information leaflets in January 2014. The resulting furor, which has seen the program delayed for six months for a rethink, has seriously damaged public trust in how the English National Health Service (NHS) intends to manage the country’s medical data. The Guardian’s “Bad Science” commentator, Ben Goldacre, a trained doctor, has warned that unless the government can un-bungle the situation, the loss of public trust will ultimately cost lives.