Core Information Standard: Reports

16 Appendix G consultation themes and questions (focus group and webinars) (page 19 of 27) in Final report (chapter 2 of 5) within Core Information Standard: Reports

Aims	Participants	Consultation questions/themes
Citizen focus group
Understand needs, priorities and preferences of people	Focus group discussion with six to 10 people who use services and carers to understand their priorities plus, and multi-disciplinary professionals.	Participants were asked to complete examples of where they have experienced issues with information sharing and to propose solutions on how this could be improved. These were stuck to the walls and participants asked to identify key themes and solutions on post-it notes for each experience and these were then aggregated into common themes and proposals.
Ensuring the information enables and encourages greater self-management of care
People using services and their carers webinar
Understand needs, priorities and preferences of people ensuring the information enables and encourages greater self-management of care	Webinar with people who use services, their carers and multi-disciplinary professionals.	What would you like to contribute to your health & wellbeing information? If you had a section of information dedicated to you, what would be in it? How could this core information enable you to gain more autonomy and reduce the burden and anxiety of being a ‘patient’? How could the core information provide next steps in your treatment journey? How could the core information record what is most pertinent to you, and what you want to be dealt with?

| | | |---|---| | | What might you need to see from the past and how might that be helpful? e.g. past appointments, discharge summaries from previous admissions etc. | | | How could the core information facilitate better communication? | | | What information could you anticipate not wanting to share with a carer? | | | What support would you need to decide what information a carer should be able to see? | | | How could the core information support carers to fulfil their role? | | | How could the core information support carers to fulfil their role? | | | If you could access your results, how and when would you like to receive them? | | | What documents would you like to access? | | | e.g. Letters, scans, discharge summaries, results, pathology reports etc. |

Social care

| Identify what information should be stored, for what purpose and how in relation to social care. | Led by social care specialist advisor. Social care professionals, providers of care, people who use social care services and carers, as well as clinicians. | Social care professionals, providers of care and people who use services as well as clinicians were asked if data requirements of councils, home care agencies, nursing homes, residential homes and supported living schemes radically different from each other. What does the health-aspect of social care need from health and social care? Language-wise what is lost in translation between health and social care? Child social care information seems to focus on: • Safeguarding | Social care is a broad area with different needs for local authorities, care providers and domiciliary care. Working with LGA/SOCITM to elicit LA and Care Provider Support Service to identify needs of care providers. |

Flags e.g. team around the child, special educational needs etc.

What else should be included? How could the PRSB better engage with child social care providers? When someone stops receiving social care support, after closing the case what should remain in the core information? Should safeguarding be part of the core information? How much information should be available? How should disabilities be recorded? Should temporary disabilities be recorded? e.g. post-operative recovery, side-effects from treatment Do social care providers see value in including the primary support reason in the core information? Where could primary support reason sit as a data field? Should the core information include the details of organisations involved in supporting the individual:

If the organisation cannot access or add to the core information?

If there is no supporting context provided, e.g. team around the family (TAF), educational services? Should the core information include whether the individual is being supported by a local care initiative, which may not be relevant outside of their immediate area?

Mental Health

To identify elements of existing standards that should be included in the core	Led by MH specialist advisor, MHS professionals, BPS network	Five scenarios were shared with the mental health professionals, psychologists and users of services/carers during this consultation and the following questions were asked in regard to each:
		What information does this person need in this care setting? What’s missing from this picture/scenario? What else is there? What other benefits/ uses could there be?
Encounters, alerts, appointments and test orders
Identify what information should be stored, for what purpose and how in relation to events	Technical architects informaticians, clinicians and service users for what purpose and how in relation to events etc.	Clinicians and people who use services were asked what set of information related to events, alerts etc. should be recorded and at what level of detail for retrospective data collection and prospective use.
End of life
Identify what information should be stored, for what purpose and how in relation to end of life care.		Clinicians, social care professionals, carers and people using health and care services were asked the following questions as part of the consultation:	Different place EOL information is represented in the standard?
		What information do individuals, carers and professionals involved in end of life care think is most valuable?
		What are the clinical issues affecting how information is captured and viewed?
		How will patients and carers be affected through sharing the core information?
		What are the benefits?
		What are the risks?
		Do you think a primary diagnosis indicator should be part of the core information?
		Should the core information include the details of organisations involved in supporting the individual:
		If the organisation cannot access or add to the core information?
		If there is no supporting context provided e.g. educational services?
		Should the core information include whether the individual is being supported by a local care initiative, which may not be relevant outside of their immediate area?
		Is 'end of life' an appropriate name for this section? What could it be named instead?
		What information should be recorded about certification of death?
Maternity and child health
To identify elements of existing standards that should be included in the core.		Clinicians and women attending the consultation will be asked the following questions:
		Should the whole healthy child record be available from the core record whilst you are a child, similarly with the maternity record for pregnant women?
		What elements of the healthy child record would need to stay in the core record when the young person transitions to adult services? Should the maternity record continue to be routinely available after the pregnancy outcome and, if so, for how long?

What elements of the maternity record may be relevant to a pregnant woman who presents to a healthcare professional for something not directly relevant to her maternity care?

Should safeguarding concerns be included in the LHCR record, which is available to all health care professionals and patients?

Should detailed pregnancy outcome delivery and birth information be included in the core record or just the obstetric history of the maternity record?

Is blood transfusion history / refusal of blood transfusion relevant for a core record?

Should the “Immunisations” section be renamed “vaccinations”?

In the family history section, the core record does not include a heading for maternal medical conditions or infectious diseases arising in pregnancy which may have an impact on the foetus – would this be relevant to include?

Should local authority for the child protection plan and looked after child status be included in the core record?

Page last updated: 28 July 2026