2.15 Q15. Correspondence This is a section where any correspondence relating to the person can be stored. Should the core information set include correspondence such as outpatient letters or letters from patients? (page 47 of 5) in Survey Results and Analysis (chapter 4 of 5) within Core Information Standard: Reports

Answered: 997 Skipped: 13

| ANSWER CHOICES | RESPONSES | |---|---| | Yes | 67.60% | | No | 9.63% | | Not sure | 22.77% | | TOTAL | 997 |

• People using services and clinical participants had similar responses with approximately 60% of these groups indicating that they think correspondence should be included in the core information standard.
• Social care professionals were less sure, 56% agreed that correspondence should be shared.
• Vendor representatives, NHS administration and management and pharmacy were keener for correspondence to be shared with 70%-80% of people suggesting it should be included in the core information standard.

Only 42.42% of carers said 'yes', 48.48% said that they were not sure about including correspondence in the core information standard.

226 people left comments

A number of themes emerged from the qualitative analysis:

Is correspondence 'core'?

• Some respondents felt that correspondence was vital whilst others felt it was not 'core' information.
• Some expressed the view that all relevant information would be coded on the clinical system and so the source should not be required.
• A general consensus was that routine correspondence such as appointment letters should not be included.
• If correspondence is included, it would need to be indexed, structured and dated.

Security and confidentiality 'need to know'

• Many comments reflected (or referred to) those in question 4 responses. This included access on a 'need to know' basis, with data only being shared if relevant to the service being delivered.
• Many correspondents identified that individual consent should be required.

Information overload

• Many respondents commented on the particular risk of information overload if they needed to wade through correspondence in search of information. Some suggested summary information should be held.

Third party information

• Several respondents identified the risk that third-party information might be included in correspondence and this had legal implications.

"This is one of the most valuable features of a care record, especially when the development of the record is in its infancy. If you watch a doctor in out-patients with a fat set of paper records the first thing they do is turn to the last letter to the GP or the last discharge summary. These records summarise the care so far and are an excellent starting point for the current consultation." (Retired GP, primary care)

"Too wide a topic and an overwhelming amount of data could end up being shared that no clinician would have the time to wade through. The key data points should be covered in the other elements of the information set. I suggest seeing how long it would take to wade through just 20 documents to find out if there is any valuable data and consider the reality of this in clinical practice. Even with advanced document management structures and advanced searching capabilities based on character recognition this task just will take too long for most clinical scenarios." (Solutions management with focus on population health management and interoperability, third party supplier)

2.16 Q16. Safeguarding The following table of information is taken from the safeguarding and risks section of the core information standard. Should the core information set include details of historic (now closed) child protection plans? (A child protection plan acts to keep a child safe from abuse and neglect).

| ANSWER CHOICES | RESPONSES | | | -------------- | --------- | ----- | | Yes | 69.54% | 694 | | No | 7.11% | 71 | | Not sure | 23.35% | 233 | | TOTAL | | 998 |

• All midwives think that the core information set should include details of historic child protection plans.
• Nurses and mental health professionals were keen to include historic plans with 85% and 83% responding 'yes'.
• Only 50% of pharmacists and 58% of carers think historic plans should be included.

198 people left comments

Differing views

• Historic information should not be held.
• Historic information should be held but for a limited time; between one to 10 years or on reaching adulthood (although some individuals may wish for the history to be held).
• A safeguarding flag could indicate that there had been a child protection plan (CPP) and the professional could find the information elsewhere (this was one of the most popular views).
• There could be a link to the historic CPP.
• An abridged version could be held.
• The historic CPP should remain as it may influence future care decisions.

Security and confidentiality 'need to know'

• Many comments reflected (or referred to) those in question 4 responses. This included access on a 'need to know' basis, with data only being shared if relevant to the service being delivered.
• Many correspondents identified that individual consent should be required.

Vulnerable adults

• Many respondents expressed the view that safeguarding should extend to vulnerable adults.

Overlap with risks / alerts

• Several respondents observed that there seemed to be an overlap with risks / alerts.

"This is already covered by the Child Protection Information Service. Every clinician with a valid need should have access to this service (not just in urgent care as it is available currently)" (Person using services)

"50% of safeguarding alerts to my (adults) team in social services are closed as not meeting s42 Care Act. 2/3 of those that do are minor, and the risk has been managed/ eliminated even before the report is made. I feel that only serious or ongoing concerns should be recorded" (Social care professional, local authority)

"Extensive training is required for good quality safeguarding recording and responding - is this issue and the risk of recording and responding (not responding) built into this transformation - the information cannot just be shared into already under skilled and overloaded health and care services" (Specialist midwife for change and transformation, multi-sector partnership)

2.17 Q17. Should disability be included as a separate section in the core information set?

Answered: 993 Skipped: 27

| ANSWER CHOICES | RESPONSES | | | :------------- | :---------- | :-------- | | Yes | 64.29% | 632 | | No | 14.65% | 144 | | Not sure | 21.06% | 207 | | TOTAL | | 983 |

• All midwives thought that disability should be included as a separate section of the core information set.
• Of all the other groups between 60 – 67 % said they think disability should be included as a separate section.
• Despite 64.29% of respondents answering 'Yes', the overwhelming view of respondents was that it was very important that the data was included but that it should be part of 'about me' and 'individual requirements' rather than a separate section.
• Several expressed the view that individuals don't want to be labelled by impairments.
• A small number of respondents felt that it should be separate so that it was quickly and easily accessed, rather than perhaps looking through textual information which might be time consuming.

154 people left comments

A theme emerged from the qualitative analysis:

Security and Confidentiality 'need to know'

• Many comments reflected (or referred to) those in Question 4 responses. This included access on a 'need to know' basis, with data only being shared if relevant to the service being delivered.

"This information often gets overlooked or swamped by a medical model of care. It is important in its own right." (OT in Oncology + palliative Care in an Acute NHS Hospital Trust)

"Support requirements should definitely be shared (the NHS England Learning Disability and Autism Forum told us this). The disability diagnosis is less important- some people want to share this, some people don't. So, things like adjustments to information, access, environment, treatment etc" (Public engagement manager for learning disability and autism)

"As a disabled person with multiple health conditions managing their own care, I can't access this at the moment and it would be so helpful to me if I could." (Patient)

2.18 Q18. End of life This is the 'End of life' section in the draft core information standard.

Answered: 994 Skipped: 16

| ANSWER CHOICES | RESPONSES | | |---|---|---| | Yes | 69.11% | 687 | | No | 6.74% | 67 | | Not sure | 24.14% | 240 | | TOTAL | | 994 |

• 78% of clinical respondents think that we have included all the end of life information needed for the core information set.
• 68% of allied health and social professionals think the information we have included is correct.
• 59% of carers and 62% of patients are happy that we have included all the information needed for end of life care, as part of the core information set.

212 people left comments

A number of themes emerged from the qualitative analysis:

Person-centred

• The observation was made that this should be more person-centred. There is a section for professional comment but not for individual or family comment. There is also a need to know whether the family has been involved in or is aware of preferences.

Timeliness of data

• There is a need to ensure that this data is the most up to date and is accurate; DNR decisions can change and erroneous data could result in a death.

Estimated prognosis

• Several respondents felt that this should not be included due to the fact that it is often inaccurate.

Hospices and organisations that support end of life care

• There will be a requirement to share this data with hospices and organisations that support end of life care.

"You may also want to consider wishes for organ donation/medical research" (Business and performance lead, mental health/ learning disability hospital)

"Should it reference a RESPECT form if completed or other recognised end of life plans." (Person using services)

"This is a section where the person really could contribute and make their wishes known end of life wishes, e.g. food/drinks places and people music and light/comfort Living will could be attached. Continuing healthcare status DST attached Donor status also could be included, e.g. organs and preferences crematorium /burial funeral plans if no next of kin." (OT, community care)

2.19 Q19. Do you have any comments you would like to add before submitting the survey?

Answered: 253 Skipped: 757

A number of themes emerged from the qualitative analysis:

# Information governance

# Information is up to date

# Information overload

# Ambitious scope

# Person held data

"The standards overall don't address concerns about the scope of access across a wide range of health and social care agencies. What happens when people don't wish for more sensitive information (e.g. HIV status, trauma history, domestic violence, details of therapy sessions) to be widely and readily accessible to all health/ social care professionals involved in their care?" (Consultant clinical psychologist, community care)

"The accuracy and pertinence of this data could become a burden on healthcare professionals. There is no guarantee that any records will be maintained and utilised correctly. Not having access to accurate and timely healthcare records can hinder treatment and increase harm. However the task to standardise this across so many systems and individuals is gargantuan." (Pharmacist, primary care)

"I work in the Out of Hours setting and often meet patients and their families for the first time before having to make complex decisions about their on-going care. Having access to all of the above, in an accessible format, would improve their care considerably.” (GP, urgent care services)