Sharing data between organisations can be very helpful, efficient, make many people’s lives easier, and even be expected. It can also be scary, cause harm, and be risky. Here are a few considerations to work through if you or your organisation is being asked to share data. By no means is it exhaustive so add more as you see fit.
Data Ownership – who’s data is it anyway? Is ownership the right term to use?
Sensitive Data – There are different types of data, therefore it is critical to be clear on the data to be shared and not shared and who needs to be involved in decision making based on the type of data to be shared.
Just because we can, does not mean we should – Technology offers us all sorts of possibilities. Not all of these are smart, and not all of these will have good effects on the world. Our priority is to respect and protect people and their rights – and that requires us to be thoughtful about our own actions. It’s not just about us.
Higher Standards than just legal – In many cases, legal and regulatory frameworks have not yet caught up to the real-world effects of data and technology. We need to think beyond just PII. I Due to the fact, we work with some of the world’s most vulnerable people, we need to hold ourselves and those with whom we share data to a higher standard. Where the law is silent or non-existent, we must hold ourselves to the highest appropriate standard.
Mutuality – is the sharing one-direction, two-directions, or multi-directional?
Privacy, Protection, & Security – What are the standards and expectations in these areas?
Data Rights – what are the rights of the data subject? Do they have any choice? How can they request their data to be deleted after it has been shared? How can they access their data?
Consent and Choice – Consent needs to be as explicit and meaningful as possible. It is recognised it is difficult to achieve this 100%, however significant efforts must be made. Communication about the individual’s data rights should be a prerequisite to obtaining consent. Consent also presupposes choice so how is choice being considered in data sharing?
Data & Digital Literacy – We must always assume there are pockets of illiteracy in communities with whom we work and our own staff. We must work to address this so that the vulnerable people have a better understanding of what they are consenting to.