You are in the Data Zone
Note: These use cases are a first draft, and in some cases are still under initial development. Whilst based on countless conversations with professionals and members of the public, they haven't yet been validated. Comments on the use cases are particularly welcome.
Use case:
Prevention of Future Deaths
My review of 12 months' worth of Prevention of Future Deaths (PFD) reports uncovered a huge range of scenarios in which professionals need, but aren't given, access to information about people they are working with. In these cases the information isn't just a "nice to have" - it's essential to those professionals' ability to keep people safe, and even to keep them alive. The PFD Zone of this website provides ample evidence of the breadth and severity of the problem.
This use case summarises some of the most common problems.
As
a professional in any public-facing role
I need
easy access to the right information about the people I engage with or support - including, in some cases, special category data
so that
I can be aware of the specific risks to someone's health, safety, wellbeing and life, and make the right decisions about how to help and support them in real time.
Priority information
Useful information
Background
Further narrative
There is no one-size-fits-all scenario or solution here. However, common themes include:
Professionals who record/create information often don't know who else might have a genuine need to see it, so may not record it in a way that can be easily understood.
Legacy platforms and systems are extremely poor at capturing and exchanging consistent structured data.
Professionals often don't have the time for an effective handover between colleagues.
Some prima facie evidence of "GDPR Says No syndrome".
A reluctance to treat the person's own information as of equal importance and validity as professionals' information.
A reliance on what systems and platforms ought to do in respect of flagging the most important data, rather than understanding what they actualy do (and don't) do.
Some suggested priorities:
A rethink of the approach to data protection training, so that the obligation to share information when appropriate is given equal consideration to the obligations of privacy and security.
Giving a high priority to mandated data standards for interoperability of systems across all relevant sectors, not just in the NHS - and enforcing that mandate.
An inclusive public debate which raises the profile of the problem(s), incorporates ethical and cybersecurity issues, acknowledges past mistakes, and counteracts the more alarmist elements of conspiracy theorists.
More to follow.
