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Gaining public trust in data sharing is about more than terminology

19 May 2017

Changing how we label those who hold data won’t generate public trust. Data quality and transparency will.

by Pamela Cook

 

I recently saw an article published on the Public Technology website that addressed a key issue in the world of data sharing: public trust. With trust comes consent and without it, data cannot be shared and we’re left with an inaccurate dataset on which we cannot make informed decisions.

Lydia Drumright, an academic from Cambridge University has proposed we move away from ‘ownership terminology’ when it comes to how the government, and more specifically the health sector, discusses data held about the public.

Speaking at a workshop organised by the industry group TechUK at the AI Summit earlier this month, Drumright discussed the problems the government has had in gaining public support for its plans for data sharing. Despite the goal of improving services for the public, the lack of transparency about how data would be used and how people could opt-out meant that a recent attempt at large scale data sharing across the health sector had to be abandoned.

Drumright has argued that a crucial step in gaining the trust of the public and support for data sharing in the health sector is to redefine how their data is talked about. She talked about how we should consider those who hold their data as ‘guardians’ as opposed to ‘owners’, as they are largely referred to at present.

Reframing those who hold data as guardians as opposed to owners could have internal benefits and potentially break down some of the barriers to data sharing between governmental departments, leading to more accurate data. However, this is a separate issue and whether it would directly impact public trust is debatable. In my opinion there are two more pertinent issues that affect public trust in how their data is being used.

Firstly, the issue of data quality. I believe it is crucial to establish and build trust in the data itself by making sure it is accurate, relevant and easily accessible. The public needs to have confidence that the data being held about them is correct; visibility and an ability to challenge the data are key to this.

Secondly, the issue of usage transparency. The public need to understand the purpose for the sharing of their data, how they will benefit and how they can opt-out. Public mistrust can arise if there is no transparency or open lines of communication about usage. Feeling like they have enough information to give informed consent will not only improve trust, but also engagement.

In terms of the health sector, addressing these two factors will pave the way for comprehensive data sharing that will allow for variety of citizen-focused programmes such as early intervention; support of vulnerable citizens and healthcare management.