Core information standard: Reports

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• 81.56% of participants think 'about me' information should be prioritised as part of the core information record.
• No carers, pharmacists or midwifes responded saying that they didn't think 'about me' information should be prioritised.
• Overall, less than 5% of respondents said they didn't want 'about me' information to be prioritised. 12% of GPs and 7.32 % of doctors held this position, as did 5% of patients and people who use services.

238 people left comments

A number of themes emerged from the qualitative analysis:

Information being entered and kept up to date

• Concerns were expressed about who would enter the data (person using services or the professional), who would be responsible for it and how it would be kept up to date. The latter was identified by several respondents as a significant challenge.

Concerns about information overload

• Concern was raised that people might provide too much information for professionals to digest.

5. Other comments Other notable comments included:

• Concern about disclosure of information not relating to the care being given
• Should be optional
• Especially important for those with complex needs or communication difficulties
• Provenance is important
• Needs to be structured to be useful
• Useful for unconscious patients / palliative / elderly to know advance directives etc
• Should include 'who is important to me'
• Helps carers convey to the professional who the person is
• Will need significant investment in training and incentives for it to be used.

"It should become the norm, like a birth plan, for anyone with a health condition. But not compulsory. A patient passport model also works well" (OT in oncology + palliative care in an acute NHS hospital trust)

"Not necessarily a priority but would be useful to capture at some stage. Patient-centred approach is beneficial but could be challenging if patients or carers can directly upload their preferences in a shared record. How do we manage preferences such as 'I need home visits as I have no transport'? What happens if a patient uploads 'I don't want any tests or investigations as they are pointless' - how do we accept this/capacity to make decision/legal obligation to honour preferences. I think it will need more thoughts on this section." (GP)

"Definitely. I think we miss this information in services at the moment and it hinders the care we provide. This is the sort of information that care professionals can know which can make the care people receive exceptional rather than good. It is extremely important- especially for cultural or religious practices or preferences that a person might have. It can enable a discussion with the person about the care they receive and can enable teams to be more thoughtful and person-centred when delivering that care. I've experienced breakdowns in teams and relationships between patient and healthcare professionals because this sort of information has been missed or assumptions have been made and the person hasn't been involved in having a say about the care they receive. Even if that's as simple as "I don't like tea I like coffee," or "I don't feel comfortable with male staff providing my basic care needs- I would prefer female staff". (Clinical psychologist)