Purpose, Partnerships and Best Practice: The Case for a Data Sharing Framework

February 14, 2019

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By Anna Grant, Senior Policy and Development Officer, Carnegie UK Trust

Data was seldom out of the spotlight last year – from high-profile data breaches to inappropriate data collection. Yet at the same time, pressure to use data for public benefit in order to deliver public services more efficiently and effectively, has continued to increase.

Given this media, political and policy backdrop, it has never been more important for our public services to have open and frank conversations both internally and with the public about the use of data. Engagement is a critical component for developing a trustworthy system for the collection, use and sharing of data given the often emotionally charged area of public discussion.

Last April, the Carnegie UK Trust, Involve and Understanding Patient Data published Data for Public Benefit examining how public service professionals assess the purpose and value of sharing data against the potential for harm, to determine if a proposed use could justifiably be seen to deliver public benefit. The research produced an accompanying 18 question Data Sharing Framework to enable public service providers to have better informed, more consistent and transparent data conversations and ultimately to make decisions about their data proposals. The framework asks providers to rank elements of their data proposal on a five-point scale across a variety of public-benefit criteria from the tangibility of impact measurement, to how well the use of data respects the privacy of the individual data subject.

In the second phase of the programme, we tested the framework against live data sharing proposals in a workshop with public service professionals, and today have published Involving the Public in Robust and Trustworthy Data Sharing. This short report further explores the value of a data sharing framework and how to ensure the public voice remains the central driving force within data-sharing arrangements.

In addition to the overall goals of improved efficacy, consistency and transparency of data sharing initiatives, the workshop also highlighted a number of practical benefits to professionals of utilising a data sharing framework, explored in more detail through the report, including:

  • Identifying purpose and refining articulation of the aims of a data proposal.
  • Providing focus and prioritisation to aid decision making.
  • Supporting effective partnership working by identifying which stakeholders should be included in the conversation.
  • Developing best practice approaches.
  • Aiding communication, through informing the key messages.

Conversations will continue to evolve around the development of the framework including on consent, choice of language and whether weightings of the risks and benefits are necessary. In other words, are any risks so significant they may outweigh others?

All of these discussions enable movement from individual questions to an overall decision to proceed or not. Though, as proposed at the start of this blog, underlying all of this work is the need for informed and meaningful conversations with the public.

In their companion blog, Involve explore the reasons and importance of public involvement in data sharing conversations and potential engagement methodologies that could be used to do this.

We welcome questions, comments or opportunities for further collaboration in this area. If you are a local authority or organisation interested to explore this topic further, please contact Simon Burall [email protected] or Lizzie Adams [email protected] at Involve.