Take a moment, go view this video, specifically but not exclusively the supplementary questions by Jan Logie, (about 5:35) then come back to this post so you have the background you’ll need.
Done? Thanks. The Ministry of Social Development has made an outrageous decision to hold NGO funding hostage to big data collection. The level of data collection they want might not be a problem for certain NGOs, especially were to compromise and allow an opt-in basis, such as say, ones offering immunisations. But prominent organisations like NZAC1 have expressed that handing over the requested data is a breach of confidentiality and in their view unethical, and Rape Crisis have announced they will boycott government funding if they’re made to disclose any additional data. For context, rape crisis centres are constantly struggling to recieve enough community funding to provide the services they need to even with the government’s help, so this should reinforce that they view this mandatory data-sharing as an existential threat.
As someone who has done data analysis in their work, (I did it even though it wasn’t in my job description, in fact) and who even does it in my spare time to settle matters of debate, I absolutely understand the value of this data to the government, especially in targeting their social assistance dollars more effectively. (because money should be prioritised to places where we can prove it’s effective, for sure) I understand the challenges of incomplete data sets. I also understand the challenges of people misinterpreting what data they need to provide. I will even grant that the people in the government who initially requested this data will want it for nothing other than researching what the most effective types of social spending are, and that they fully intend to be ethical caretakers of people’s private information, and to store it securely.
But none of that makes it a good idea to hold hostage NGO funding to big data. Firstly, there is the obvious issue that services involving counselling or survivors of abusive behaviour absolutely, critically need to be able to provide services on a condition of strict confidentially or even complete anonymity in some cases in order to be able to help people in our society that need it the most.
Not only is it tying the hands of counsellours or volunteers to require them to explain that clients’ data is confidential and private even though it will be provided to MSD, (in addition to being flat out inaccurate- the strict interpretation of confidentiality held to by most such services requires that records be only held in one place, be secured using physical lock-and-key for paper records and encryption for digital ones, and not be shared with anyone else outside of anonymous use in ethical review or in the event that a client is a risk to their own or someone else’s safety) people who have been raped will have difficulty filling out a form identifying themselves when they’re seeking help because they may not be ready to admit what they experienced is real, and writing something down can “make it real.” Jan Logie’s example of men who won’t even give their names is not only accurate but typical of many people seeking support, and not just men. Anyone who accepts this contract is going to be committing to turning away people unable to accept anything less than the strictest confidentiality, or worse, they’re going to entrap themselves into breaching the contract in order to help people.
What adds insult upon insult to this issue, (we’re well past the initial injury if these contracts aren’t amended for services that require confidentiality) is that the government has an expert panel2 helping guide its data strategy that has recommended against precisely this type of mandatory collection in their report3, calling for at least an easily accessible opt-out procedure for all big data collection by Government agencies, so even the proponents of big data don’t want the government to take this approach. Literally the best defense that can be made is that the government is legally allowed to insist that its data collection is more important than anonymity.
If the government wants more data from these services, the most they should reasonably do is require that clients be allowed to opt in to data collection if they’re comfortable with the idea. This allows those receptive to provide a limited data set for analysis, or to ask the questions the government are so keen for their NGO partners to explain, and those not amenable to the idea to dismiss it and still access life-saving services that most likely are incredibly effective uses of funding. If the government can concede that paid leave to deal with the aftermath of domestic violence is effective, they can certainly concede that funding services like Rape Crisis shouldn’t be contingent on mandatory data sharing.