Skip to main content
Summary Care Records with Additional Information – user research report

Research findings

Key statistics


of respondents knew the Summary Care Record could contain core items and Additional Information.


of respondents were aware that all patients' Summary Care Records now include Additional Information, unless they have opted out, for the duration of the pandemic.


of respondents stated that they use SCR to find out end of life information in emergency situations.


of users we interviewed told us that having permanent access to Additional Information in the Summary Care Record would make a permanent, and positive, difference to their role.



Our research identified 3 areas where Additional Information was considered particularly valuable. Findings are summarised below.

End of life care

The importance of sharing and knowing end of life information was commented on by staff in lots of different roles.

10% of survey respondents told us that one of their goals of accessing Summary Care Record was to find out end of life information – including wishes and preferences, resuscitation orders, care plans, ReSPECT (Recommended Summary Plan for Emergency Care and Treatment) forms, TEP (Treatment Escalation Plan)forms and power of attorney information.

Respondents stated that access to Summary Care Records with Additional Information in care homes would allow conversations with family members to be simpler as it would give them a basis for conversation and allow them to be more proactive.

Summary Care Record was cited as the obvious and central place for this information to be held, as the highest number of users across various locations and settings can have access to the same information.

Ambulance services

End of life information and advanced care plans were highlighted as the most important pieces of information for ambulance crews.
The information allows ambulance crews to make the right decision about patient care, including:

  • whether it is safe to leave the person at home, when they do not need to go to hospital right away – a care plan can support that decision
  • knowing if the patient has a 'stay at home' plan so they do not take them to hospital against their wishes

Patients with communication barriers

Access to Additional Information in Summary Care Records is important when patients are unable to tell you their symptoms, medications or needs.
This may be because the patient:

  • cannot remember medication names
  • is confused, stressed or unconscious
  • is having a drug or drink related episode
  • does not speak English
  • has dementia or is frail

Patients are not always able to give a full account of their current and past medical history. Being able to have access to a richer picture about them allows health and care professionals to take a more holistic view. Which can enable them to provide improved and safer outcomes

I think it would really be helpful if this became an opt-out process long-term. When patients are unable to communicate for reasons of acute ill health, communication problems, cognitive problems and importantly learning disability, seeing this information can make the life and death difference.


Last edited: 20 November 2020 1:34 pm