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:
3. SERVICES SHARING INFORMATION WITH A PERSON
A high level use case including
Subject Access Requests
Right of access to health and care records
System-wide approaches to accessing your own information, e.g. the NHS App
Priority data/useful data will depend on the detailed scenario.
Priority information
Useful information
Background
Mechanisms for Subject Access Requests (SARs) are clearly established. However, the SAR process is designed as a one-off exercise requiring manual effort by the data controller, and doesn't provide for people to have routine ongoing access to the records held about them.
The NHS App and the proposed Single Patient Record are two examples of this routine access. I'm not aware of any similar initiatives outside the health and care sector, but the principle ought to hold across any information held by services about the people they serve.
There will of course be some records that it may not be appropriate to include, e.g. safeguarding records. There needs to be transparency and consistency about the records services are able to share and those they are not.
This use case includes the way organisations communicate with people, e.g. when people have advised them of communication or reasonable adjustment needs. The Healthwatch campaign "Your Care Your Way" highlights issues that arise in this context.
There is also an issue about language. Most professional and clinical records will inevitably be full of jargon, for the very good reason that it gives precision and clarity to professionals about what the record means. The problem occurs when that jargon carries different meanings to different professionals, and even more so when the jargon has an 'othering' effect of excluding or diminishing the person it's being used to describe. Bryony Shannon's blog, Rewriting Social Care, has a list of "Words that make me go hmmm...", where she says "Although I’m not keen on policing language, there are some words on this list that I’d happily ban, because I genuinely don’t feel they have any place in a human, relational way of working. Other words are on the list because I think we interpret their meaning in ways that can be harmful."
Further narrative
Detail to follow
