NHS West Suffolk CCG / NHS Ipswich & East Suffolk CCG

Patient Records and Increasing Opt-In - Summary Care Record with Additional information

Background

The team at Ipswich & East Suffolk and West Suffolk CCG actively promote information sharing. There is a focus on patients’ awareness of their choices about how their information is shared and the benefits of making it accessible.

Currently there are two choices patients can make:

• Full healthcare record sharing - which is available to your GP practice, acute care hospitals and community services if they are involved in their care.
  
• Summary care record - with additional information. (SCRai)
  

The summary care record is held on a national system. By allowing healthcare staff to see additional information you give them access to:

• Significant medical history (past and present)
  
• Reasons for medication
  
• Anticipatory care information (such as information about the management of long- term conditions)
  
• Communication preferences
  
• End of life care information
  
• Immunisations
  
• Approx. 1500 coded entries if they exist on the patients record.
  

Patients need to ‘opt in’ to allow access to their summary care record with additional information. (SCRai)

When a patient consents to including additional information in their SCR, the GP can add it simply by changing the consent status on the clinical system. This means more information will be available to health and care staff viewing the SCR in other healthcare settings. It will then be automatically updated when the GP record is updated. This is a quick, cost-effective way to:

• Improve the flow of information across the health and care system
  
• Increase safety and efficiency
  
• Improve care
  
• Respond to particular challenges such as winter pressures
  

It’s particularly useful; for people with complex or long terms condition, or patients reaching end of life.

The NHS Ipswich & East Suffolk and West Suffolk CCG had already taken many of the recommended steps to increase ‘opt in’ and the CCG was ranked 7th nationally with an uptake of 15%.

Oli Riches Senior Digital & IT Project Manager and his team were keen to dramatically increase uptake to ensure all patients had the benefit of the best-informed care whatever the health or care provider.

They wanted to reward GP practices which had already been successful with ‘full healthcare record sharing’ by putting in place a new process which required minimal time and effort from each practice but could deliver a significant increase in the number of patients agreeing to ‘opt in’ to the Summary Care Record with additional information.

The 14 GP surgeries within the CCG had 70/80% full healthcare record sharing but relatively low Summary Care Record with additional information opt-in.

The surgeries were collectively responsible for the care of 80,000 target patients. The total number registered at the surgeries is closer to 125000 patients.

The first trial would target 51,000 of the group.

A small pilot was run in one surgery with a budget of £2,000 targeting the palliative cohort. Each patient was sent a letter outlining exactly what a summary care record with additional information would contain, how it would help healthcare staff with delivering appropriate care and who those professionals might be and also the opt in process. Patients could opt in by letter. Subsequently they would also be able to respond online or by text.

The pilot achieved an uptake of 40+% and was sufficiently successful to provide the impetus to roll the project out on a greater scale.

The exercise would only target patients aged 16+ to ensure that it was possible to monitor the effectiveness of one mailing without the need to factor in the involvement of more than one party in the permission process.

Approach

Once the parameters of the research had been agreed the project was put out to tender and awarded to CFH Docmail Ltd.

Oli Riches says ‘From the beginning, the team at CFH Docmail were extremely easy to work with, they asked all the right questions and wanted to come up with solutions. Victoria Maunder and the business analysts worked up a detailed business requirement document, which anticipated many of the challenges.

We had wanted to get the project underway before the flu season started, which we would advocate for roll out, but this wasn’t possible due to the IT development work that was needed. This of course has now been completed and is in place for the identified GP practices to use in the future.

During the IT set up my colleague and I went out in person to all the GP surgeries to let them know what we were doing and how the programme was designed to reward and support surgeries with their commitment to increase opt ins. It was also important to reassure surgeries that this would be ‘light weight’ in terms of their involvement.

In the background we were working ‘collaboratively’ with CFH Docmail, their team listened to what we wanted and then were quick to provide answers, sharing ideas and their extensive experience.

We are directly responsible for the care of patient data for any service we commission. We needed to create a full Data Protection Impact Assessment (DPIA) which would describe the project and how data was being used. CFH Docmail were quick with all the responses and had every accreditation we needed including Cyber Essentials and ISO 27001: 2013.

Once we’d warmed up the 14 surgeries with a description of the hypothetical project and gained their agreement to take part, we went back to each one a few months later with an update.

The first letters started going out to patients in November 2019.

The most difficult part was the mail merge which involved the surgeries and relied on their expertise in basic data manipulation and the ability to create and upload spreadsheets. We also offered to batch mailings rather than sending out entire lists, to stagger responses.

The mailings were completed by February 2020.

We had planned to be a bit more circumspect and to test the water by phasing the mailings to start with but the surgeries plunged in.

One of the first learnings was that in our attempts to ensure the security of patient’s data we did cause some confusion.

We didn’t want to include the patient’s NHS number in the letter but needed to be able to identify responses and match them to patient’s data. Docmail converted each NHS number in to a 16 digit code, much as you’d get for a tax disc renewal. As a result, some patients thought it was a hoax as well as the letters coming from Livingston which was unfamiliar to them.

To counter this, we put something up on the CCG website and gave GP surgeries text to put on their own sites.

We also put a link in the letter to the CCG website to allow patients to validate the letter and check that it was legit.

Each surgery also put a copy of the letter by the door of the practice with a note explaining that the letters were genuine which avoided questions at reception. Each patient in the study received a letter, a business reply-paid envelope but also the opportunity to respond online or using an SMS short code.

There was a cut off date of approximately 4/6 weeks which was chosen by each practice in agreement with the CCG.

We debated sending out reminders or asking surgeries to intervene and prompt but we wanted to run a clean trial to see what a lack of intervention could achieve.

In terms of other key learnings perhaps one of the biggest possible issues (but the easiest to fix) was the risk of surgeries being concerned that data had not uploaded and repeating the process.

CFH built in some new logic to the system which would reject duplicate file names. As a result of this intelligence, the overenthusiastic efforts of one surgery to upload their patient list three times on Christmas Eve was intercepted.

Key learnings and results

CFH Docmail managed all the responses to the mailing via: web, mail and text together with all inbound scanning, providing us with ‘just in time’ response updates.

In total we sent out 51,283 letters across 12 surgeries and generated 20, 533 opt ins.

We achieved a response rate of 40%. The split was:

The method of response was very interesting and showed the merits of providing a multi-channel mechanism. It also clearly demonstrated the enduring importance of the physical letter and its reliability as a communication device.

The whole trial was an unqualified success. We met our objectives and now have proof of concept.

The cost benefit is without question - each opt in cost £2.07.

We can now take this study to the rest of the NHS.

Vitally we have not only proved that this works with minimum impact on practice administration but all the IT has now been developed for anyone to take advantage of this system without any start up or implementation costs and with all the parameters in place for costing each phase and anticipating response.