The Summary Care Record (SCR) is the main way that vital facts from a patient’s GP record are shared with other clinical professionals who are involved in a person’s health and care. The basic SCR includes what medication people are taking, their allergies and known adverse reactions to treatments.

My day-to-day role is part of the Spine Team in the Platforms directorate of NHS Digital, and we are in the process of delivering a re-designed version of the Summary Care Record Application. This is one of the ways a user can view a SCR. Having worked in this area for 18 months, I gained insight and knowledge regarding what our users need from a healthcare record. Past research has told me that whilst knowing about a patient’s medication and allergies are important, it’s often not enough.

The SCR also has an option to add additional information such as the patient’s long-term conditions, immunisations, and greater depth on their medical history. But this additional information had, until the coronavirus crisis, only been included for patients who had specifically opted in.

As hospital admissions spiked in the spring, the Government changed to an ‘opt-out’ model under what is known as a Control of Patient Information (COPI) notice. Additional information is now present in the SCR and shared with health and care professionals by default – except for those patients who have previously told the NHS they don’t want their information sharing.

This has been a temporary measure, originally scheduled to end in September but now extended until March 2021 due to the continued impact of coronavirus.  

As a user researcher, I was asked to find out how the additional information in the SCR was being used and the impact this had on healthcare professionals and their patients.

The first thing I did was identify who I needed to speak to and recruit them for my interview sessions. The groups I sought were located across many different health settings – not just in general practice and hospitals, but also in mental health services, prison healthcare and social care.

As we were in the midst of the first wave, I was really conscious that these people were already up against it and dealing with huge pressures, so I had to change the approach I would usually take. Most of my recruitment was through messages on social media and shared by the medical community – I made sure that my intent was clear and that the sessions would be short, with minimal time away from caring for patients.

During this recruitment and the subsequent interviews, what impressed me the most, was how passionate our users are, and the fact that they took the time to be involved will always be a reminder of how important this work is. We research and design around user needs, collaborating to identify solutions. These are some of the things I learned and stood out for me within the following settings:

I found the research I conducted with prison healthcare workers really interesting and unlike anything I had done before.

When a prisoner arrives at the prison straight from court, the staff need to know what medication they are on and an awareness of other factors, such as mental health issues. This is even more important if it is on a Friday. Before additional information was introduced, they would have to find this information out from other services, such as the registered GP, and potentially wait days to receive it, and they must ensure the person is as safe as possible through the weekend.

It’s also important for prison clinicians to know about family history and lifestyle and even something as straightforward as their vaccination record. Knowledge of vaccinations is particularly important in a young offenders’ institute because if they don’t have a record, they will vaccinate the young people anyway as a precaution against common diseases.

They also told me that access to SCR in prison healthcare is a useful tool in medication reviews, because some people don’t visit their GP very often and remain on repeat prescriptions for long periods of time, so there is the ability to stop medications too.

I have worked closely with ambulance crews for a long time now, mainly through my day-to-day role for Summary Care Record application private beta which is a redesign of the current SCRa and aims to make it more user friendly, accessible and available across a range of devices, removing the barriers of access normally over a health network like HSCN. Using my existing relationship with them it was nice to be able to talk about a different topic.

Ambulance crews have always told me that many people don’t know a lot about their own health and don’t always have great recall about their medication or conditions, which is where inclusion of additional information, would help them hugely, they said. It reduced the number of times they had to convey patients to hospital, as they felt safer in their decisions to refer to other community services.

In the past, I have carried out ethnographic research with ambulance crews, which meant that I observed them on their shifts – riding in the ambulance and assessing patients in their homes, which is one of the highlights of my career. During these shifts I saw a lot of crews having to ‘turn detective’ and look for medication packets, discharge letters and other evidence of the patient’s medical background.

Access to additional information now enables them to see this information easily and quickly. They can also find out a lot of other history (medical and social) and use this to build up a picture of the patient in front of them and have a basis for probing further with the patient if they need to.

What healthcare professionals, such as registered nurses, in care homes found particularly useful about the additional information on the SCR was the end of life care information, which is not something I had foreseen before starting my research.

They told me that when a new resident arrives, it can be a difficult conversation for the resident and their families to have, so if the care home staff can initiate that discussion with information they have learned through the SCR, it can be very helpful for everyone to know what the wishes of the resident are, and then build on that with them.

As I said earlier, I used to visit and observe users, which gave me a good idea of how busy they were in their usual settings, whether that is in a hospital ward, GP surgery or an ambulance. However, the pandemic changed that of course and interviews had to be conducted remotely.

Doing the research remotely has been strange but I think we have adapted well to the circumstances. I certainly don’t think the quality of the research has suffered. Probing people and listening carefully to their answers can be done as well over a laptop with people in their own homes as meeting up with them in their workplaces.

In addition to this qualitative research, we did some quantitative research via a national survey, which I designed. The survey was sent out via social media and through clinician networks. We asked about the impact of adding additional information and how it affected people’s care. We were able to use over 200 responses from this survey and we talk about the outcomes in our published article. It was also a really useful tool for further recruitment of users and it allowed me to have some foresight into their thoughts and feelings before our sessions, and I could tailor them a little bit more.

It was overwhelmingly clear from the research that the inclusion of additional information would not only have a positive impact on the health and care workers who are accessing it, but on patients too. Users told me that this change enables them to make more informed decisions, which is critical to ensure that people get the best and safest care.

This piece of work really was a pleasure to conduct and it is so good to know that I have been able to use the evidence collected to enable me to advocate for our NHS workers, and that Summary Care Records are being recognised as the powerful tool that they are. Users have become quickly accustomed to the availability of more information and it is becoming embedded into working practices in a range of health and care settings - the question still facing us though - is how we move forward from March, when the current temporary arrangement comes to an end?