In 2017 the NHS in Suffolk launched a publicity campaign which aimed to raise awareness of the advantages of agreeing to ‘opt in’ to share your full health record and your Summary Care Record with Additional Information.
Nationally, only a Summary Care Record (SCR) is currently shared by health professionals. This contains only basic medical information such as the medicines you take and any allergies you might have. However, by consenting to share your health record potentially vital extra additional information can be added to the SCR.
Sharing means consenting to share both a SCR with additional information (SCRai) and a full patient health record (FPR). The completed consent form can then be added to the GP’s system which then enables other health professionals to access the information. In an emergency, this additional information could be lifesaving.
Since this campaign was launched over 300,000 patients have opted in. We are still working hard to increase this number – you can help by opting in and sharing this information with your friends and family members.
You can find the form to download here:
We also attend lots of different events throughout the year to reach the pubic and their communities. If you would like us to attend an event near you please get in touch via our ‘Contact Us’ page.
‘Patient focused – public Involvement’
We couldn’t have reached this outstanding number without the help of patients and members of the public - developing public awareness involved a significant amount of engagement using both traditional and digital methods. You can read more about this below.
To start, we wanted to understand and address patient concerns;
· Feedback was gathered from the public during the Suffolk Show 2017 and the Feet on the Street campaign across 5 different locations in East Suffolk informed the development of the new consent form.
• Patients wanted specific questions to be answered on the form and for the information to be presented simply and in plain English.
• Patients were particularly concerned about their data being sold to third parties and it was essential to address these concerns. Great care was taken with the design of the consent form to ensure this issue was prominently addressed.
What we did in GP Practices;
• Monthly statistics published and shared via GP Newsletters
• A practice briefing was sent out to all practices advising on ways in which practices could increase the numbers of patients making decisions on sharing, such as inclusion of the form in registration packs, use of flu clinics to promote awareness etc.
• After the consent forms are completed, the GP’s system registers whether the patient has consented or not.
• Patients and carers are asked during care / booking appointments / any face to face contact
Partner and public participation events:
• Most practices have a Patient Participation Group (PPG), many of which have been visited by the Information Sharing Programme Manager to explain the importance of giving patients a choice. PPGs have committed to supporting practices in raising awareness by attending Flu Clinics, and regular sessions in waiting rooms during surgery hours to promote patient choice across Suffolk
• A presentation was made to GP staff attending the Training and Education Event in July 2017 to advise practices on utilizing a range of methods to increase patient decisions.
• There was a regular information sharing stand at all Training and Education events in the East where practice staff are engaged on ways to increase their statistics.
• Both CCGs have a subcommittee of their governing bodies which help oversee and support involvement with the public, called the Community Engagement Partnership in East Suffolk and the Community Engagement Group in West Suffolk. Both committees were instrumental in this work – e.g. two volunteers directly promoted this issue on social media, and organized a staff at local supermarkets, and the Patient Transport Team also sent out forms with every invoice (over 3000) in October 2017)
• Both CCGs have run events throughout the year at which we have had stands engaging with the public and encouraging the making of decisions.
· We hit the streets with a GP to talk to people in their communities about the importance of opting in.
Website and Media:
• The CCG web pages have been redesigned for ease of reading, and to point to further information for the public and GP staff if required.
• Information has been written specifically for practices to add to their websites, aligning the messaging for consistency. The Communications Team have offered to support practices in the content for their websites.
• #sharingsaveslives has been used via social media to promote events throughout Suffolk. As well as the form, a video ‘Happy to Share’, created by NHS England has been made available to surgeries for transmission on TV screens in waiting rooms, and on websites, and via social media.
External Organisation Support:
• Community Healthcare staff across East and West Suffolk have been engaged via attendance at team meetings by the Information Sharing Manager to support staff in handing out consent forms to patients who have not shared their records, and return them on the patients’ behalf to GP surgeries.
• The Voluntary and Statutory Partnership (VASP), Suffolk County Council, Healthwatch Suffolk and Dementia Together have all been supportive of this work in the same manner.
So what are the benefits of sharing your record?
• Improved patient safety by allowing data to be readily available to clinicians
• Reduced clinical risk by reducing problems such as allergic reactions to drugs or inappropriate clinical decisions based on incomplete patient history
• Community staff take less time to do first assessment as data is readily available and complete
• Time saving for practice staff as they receive less calls from community staff asking for additional information
• Reduced time for assessing a new patient in the community reduced from 60mins to 20mins (on average) if they have an accessible primary care record.
• This work lays the foundation for any future technical interoperability solution. The ‘opt-in’ in Suffolk could easily be linked into a future national health record solution.
• Improved collaborative working between providers and commissioners
One patient said;
‘My care is now much more joined up. If I get admitted to hospital, the nurses caring for me in the community know this and can offer to support me on the ward, coordinating different aspects of my care and ensuring that I have what I need when I go home. I spend less time waiting to leave hospital because the right people are having the right conversations about what needs to happen to ensure I am ready to go home.’
Coordinating telephone calls to obtain this information is often challenging but is commonly the only way for the therapist to safely confirm a complete patient history and safe instructions for the patient’s care.
A young single mother, with six children had a very ill child – feverish, had a rash, she was with all the other children as well, it was night time. She got the children in the car, got to the hospital. That’s when it started – the questions from the nurse triaging her child’s case, over and over again. She’s in a worried state, the other children are worried and variously crying, talking or whatever.
She cannot remember in that state whether this child has had chicken pox or what vaccinations she’s had. It got worse, as they were seen by a doctor, who pretty much asked the same questions. When the sharing of records was explained, and how it might help in a situation like that, she couldn’t wait to sign the form and fill them in for all her children.