The survey

In the survey, we asked the following questions:

• what is your role?
• what is your care setting?
• what is your viewing method?
• what are your goals when accessing Summary Care Records (SCR)?
• do you know there are core items and Additional Information items that can be present in a person’s SCR?
• are you aware that all patients’ SCRs will now include Additional Information items (unless they previously told the NHS they did not want to share them)?
• please rank the SCR items below in order of how important they are to you, when providing care to a patient (drag and drop)
• which patient groups (if any) do you think will benefit from the inclusion of Additional Information in SCR?
• thinking about your recent use of SCR, are there any cases where you feel that access to this Additional Information particularly helped, or would have helped?
• do you have any other feedback about SCRs that you would like to make us aware of?

We gave respondents a list of SCR features to rank in order of importance to them. The top 6 features, as ranked by these users, are all from Additional Information.

Although users told us that these are the items of information that are of most importance to them, not all of these items will be populated in someone’s SCR all of the time (except Core SCR items)

We gave users a list of patient groups and asked them to tell us if Additional Information in SCR would help support their care.

Example: Out of 209 users surveyed, 153 of those users felt that ‘Patients with dementia or learning disabilities’ would benefit from Additional Information being included in their Summary Care Record and it would support their care.

Respondents also had the option to provide supporting comments on the categories we provided, to give more detail on exactly how Additional Information would help in the care of specific patient groups. Some of their responses are given below.  These are direct quotes from survey responses.

Frail patients

Responses about frail patients included:

• 'very important as helps reduce unnecessary conveyance'
• 'often have other HCPs [health care professionals] working with them to understand their wishes and plan for the future. This can be indicated in a Summary Care Record with Additional Information and benefit the patient by receiving care in line with their expressed wishes'

Long term conditions

Responses about patients with long term conditions included:

• 'helpful to understand usual function, for example if COPD, is it mild or is it severe and the patient has low oxygen saturations which are normal for them'

Eligible for flu vaccination

Responses about patients who are eligible for flu vaccination included:

• 'if the patient is eligible for flu vaccination there is going to be an underlying condition and therefore knowing this, is useful to understand level of risk

Dementia or learning difficulties

Responses about patients with dementia or learning difficulties included:

• 'very useful for patients who may live alone and have different carers in throughout the day - it can be very difficult to gain an accurate and current history of the patient, particularly in the out of hours setting.'
•  ‘helpful to know about reasonable adjustments and if someone specific may be able to help and provide support’

Patients approaching end of life

Responses about patients who are approaching for end of life included:

• 'understanding the patient's treatment wishes and DNAR, for example, do not attempt resuscitation status, is essential in helping provide dignity in their end of life process and eventual death, avoiding unnecessary hospital admission'
• 'sharing of plans is useful, especially if the patient is staying with family and not known to care providers'
•  'essential for reducing unnecessary admission, but also so ambulance crews can see the plans to ensure that they are followed, and give the correct advice'

Physical, sensory, or other disabilities

Responses about patients with physical, sensory, or other disabilities included:

• 'this assists with communication and knowledge of the patient's abilities'
•  'useful for finding out reasonable adjustments, for example, if the patient is deaf but can do BSL or lip read - have they got support?'

Non-English speakers

Responses about non-English speaking patients included:

• 'very useful and much quicker than trying to work with a phone translator to find out key information in an emergency setting'

Patients with carers

Responses about patients with carers included:

• 'useful to find out the name of care company and frequency of visits, with the ability to feed concerns back to GP'

Specific care preferences

Responses about patients with specific care preferences included:

• 'can be clear [on specific preferences] for example, [a patient may be a] Jehovah's Witness and not want to have a blood transfusion'

We gave respondents the option to list patient groups they felt would benefit from Additional Information in Summary Care Records. Their responses were:

• shielding patients
• patients lacking capacity
• all patients, regardless of group
• high intensity users
•  people with mental illness
• any patients that access in-hours care outside of their GP
• looked after children