What's this site about?
This is a discussion about how information about people’s specific needs and circumstances can be shared more effectively among the organisations supporting them and providing them with essential services.
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There are two strands to the discussion. The first (What people need to Solutions, via PFD reports if you have the time and inclination), stems from real-life problems experienced by real people – problems which organisations and services may never be aware of. The second (What professionals need to Digital Firebox, with Population level insights as background/context) is about how organisations manage their data, how they ensure its quality, and whether it gives them the insight they need for operational and strategic decision-making.
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​The content of this site reflects the views of its author. It draws heavily on my experience working for Civiteq (formerly Socitm Advisory), but neither Civiteq nor I have ever been specifically commissioned to carry out this work. I'm grateful to Civiteq for allowing me to take this work with me when I left the organisation, and to my colleagues there - and many others besides - for their insights as I have developed these ideas. I'm continuing to research this in association with Socitm.
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From the author’s perspective, this discussion is intended to contribute to:
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Improved understanding of how and when information can and/or should be shared, including better training materials about GDPR/information sharing
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A more mature and better informed public debate about information sharing and privacy
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…both leading to improved confidence in sharing information when appropriate
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A step-change in people’s ability to share information about themselves – including (but not limited to) reasonable adjustments for communication needs or protected characteristics – and to expect all services to take them into account
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Clearer functional requirements for a wide range of systems/applications in respect of data standards, interoperability etc
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More consistent use of the UPRN as a core data standard across as many systems and sectors as possible
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Development and/or promotion of other relevant data standards, including for person-focused data
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In the longer term, identification of potential changes to the law and/or statutory guidance.
To get to this point I'm seeking to:
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Engage with as many stakeholders as possible
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Gather as much information as possible about the problem and potential ways to mitigate/resolve it
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Identify, and where possible contribute to or promote, any current or emerging initiatives and/or good practice intended to rectify the problem.
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There's quite a spread of stakeholders involved in these issues, from people with lived experience of their information not being shared, to Caldicott Guardians, data protection officers, data architects, policymakers and professionals across multiple disciplines. Parts of the discussion will inevitably be more relevant to some roles than others, but for the time being I've structured the site to offer a single narrative.
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The sections on data and use cases and Prevention of Future Deaths (PFD) reports both contain a lot of detailed information which may distract from the main narrative. I've colour-coded them red and blue for ease of navigation.
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(This site now also hosts the Adult Social Care Glossary which was developed as a by-product of a project for NHS England on social care terminology. I'm starting to include links to definitions of some of the key language used in this area.)
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​​Other stakeholders may have different priorities or approaches to which this discussion may contribute. Please feel free to add comments and join the conversation.
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