#National data guardian plus

It is a principle that has been recognised by the courts. My right to be able to transparently observe how public institutions operate can sometimes trump your right to privacy. The central role that big data already plays in the operations of the state has two important implications. Data sharing is the means we have to assess whether this is occurring and to assure ourselves about the fairness of social arrangements. It was an example of how the failure to use public funds effectively to deliver an appropriate standard of care to all citizens fell short of the basic requirements of a fair society.ДЄs recent events in both the UK and the US have demonstrated, if communities feel that the education, healthcare and community safety being delivered by the state is not equitable, it undermines the foundations of society. When standards of care at Mid-Staffordshire hospital collapsed, the problem was not simply that the people of Mid-Staffordshire would have benefited from a better standard of care. Sharing data is not just a matter of uncertain potential future benefits, it also plays a unique and central role in ensuring a fair society. It is sometimes accepted because the benefits of data sharing are presented as nice-to-haves, such as new scientific discoveries, rather than necessary requirements for a fair and democratic society.

The dialogue was conducted by Hopkins Van Mil and evaluated by 3KQ.The widely accepted idea that my right to privacy always trumps your right to the benefits that might accrue from data sharing needs to be challenged on ethical grounds. Throughout the process participants had the opportunity to interact and discuss the topic with policymakers and specialists in data use in health and adult social care settings. Reflective tasks were completed in participantsвЂ™ own time in a dedicated online space. Dialogue activities were designed for online participation, with groups of 28 in each location supported to work collaboratively on Zoom.

#National data guardian plus

Each participant attended five dialogue events вЂ“ 4 workshops plus a webinar. The public dialogue engaged 112 participants recruited in a 50-mile radius from four locations: Great Yarmouth, Stockport, Plymouth and Reading. This helped ensure that the findings go beyond a snapshot of peopleвЂ™s views during a crisis to provide a thoughtful response of long-term value. Participants were encouraged throughout the dialogue to imagine a time before the pandemic began affecting daily lives, and to consider a future where the major disruptive effects of COVID-19 are a memory rather than a current reality. The dialogue took place during the COVID-19 crisis, and the ways in which the pandemic revealed or tested many aspects of health and social care undoubtedly informed participant thinking as they considered the use of health and adult social care data beyond individual care. Thirdly, to explore how far the attitudes vary on the first two points when social care data is being used. Secondly, to explore how people weight the benefits and risks of the use of data generated from publicly funded health and care. Firstly, to test the commissioning bodiesвЂ™ existing understanding of what people consider to be beneficial about the use of health and adult social care data for purposes beyond individual care (e.g. The scope of the dialogue focussed on three key points. This will draw on the dialogue findings and is due later this year.

The second is guidance to support those making public benefit assessments, under the National Data GuardianвЂ™s statutory powers to issue guidance. One is this public dialogue report вЂ“ Putting good into practice: A public dialogue on making public benefit assessments when using health and social care data вЂ“ published by the National Data Guardian on 14 April 2021. The aim was to understand how participants assess public benefit in the use of health and adult social care data, for purposes beyond individual care. In March 2020, the National Data Guardian and Understanding Patient Data commissioned a public dialogue supported by UKRIвЂ™s Sciencewise programme.