Answers to the following questions are designed to help explain what JUYI is and how it will benefit patients.

If you have a question that you don’t feel is answered here you can submit it by email

Who is responsible for the initiative?

The Joining Up Your Information project is being led by NHS Gloucestershire Clinical Commissioning Group (the NHS body led by GP practices that buys NHS care in Gloucestershire) and has representation from all the main Gloucestershire care providers:

  • Gloucestershire GPs
  • Gloucestershire Hospitals NHS Foundation Trust
  • Gloucestershire Health and Care NHS Foundation Trust
  • South Western Ambulance Service NHS Foundation Trust
  • Gloucestershire County Council.

Patient groups are also being consulted.

Why do you want to share my health records?

Technology allows us to give clinicians and social care professionals instant access to the most up-to-date information about the people we are looking after.

We want to use this technology to provide the best care possible. The key benefits of sharing information in this way include:

  • Improving patient safety
  • Fostering more co-ordinated and joined up care
  • Reducing duplication of laboratory tests
  • Cutting the time spent by clinicians getting information from more than one source
  • Reducing emergency admissions and the time people have to stay insource hospital.
Is this a local or national project?

This is a local project. In the main, this means that the sharing is limited to Gloucestershire, but if a patient lives on a border and has treatment in a hospital in an area outside the county, for example, Swindon or Bristol, then it makes sense for clinicians treating them to be able to see their information.

You may have heard about other NHS data sharing initiatives. These are separate to your local shared care information.

  • Summary Care Records – contain a limited amount of data and are available nationally to support urgent care situations.SCRs are designed to improve the quality of care in emergencies and when your GP practice is closed.You can discuss with your GP if you wish to have additional information included in your SCR.More information from NHS England about Summary Care Records
  • Local clinical care audits – Gloucestershire Clinical Commissioning Group (CCG), the GP-led body that buys NHS care in the county, carries out clinical audits.These audits help GPs to understand the health needs of their patients more accurately and mean the CCG and others involved in health and social care planning can make the best use of resources across the county. They have proved particularly useful in helping practices to improve how they identify and treat diabetes and dementia in the county.The CCG follows strict guidelines to ensure the information it receives is anonymised and is analysed securely and confidentially. The information goes through an automatic process so anything directly identifying a patient is removed before being passed to the audit team.You can opt in or out of this process by contacting your GP practice.More information from National Institute for Health Care Excellence – Standards and Indicators
Some GP practices are already sharing information - is this the same as JUYI?

No.

Some GP practices (about half in Gloucestershire) and other NHS organisations use a patient record system called SystmOne. This allows sharing with other SystmOne organisations only.

JUYI is a system where any of the professionals who might be caring for you will have access to your records. This includes the Gloucestershire Royal Hospital and Cheltenham General Hospital, Gloucestershire Health and Care NHS Foundation Trust, providing physical health, mental health and learning disability services, the ambulance service (South Western Ambulance Service) and also Gloucestershire County Council’s social care teams.

All of these organisations use specialised systems designed for their own needs.

JUYI will allow each of these specialised systems to be joined together to create a view-only record of information from all the professionals you have seen.

Why is my information not shared electronically already?

Historically, different parts of the NHS have had their own paper records and information is exchanged using letters, telephone calls and faxes.

The ability to store health information digitally and provide access to it means the NHS is now starting to transform the way it handles this information.

JUYI is part of that process and we believe it will improve the quality of care you receive and reduce the amount of time spent by staff tracking down accurate, up-to-date information.

What sort of information is available?

The information available typically includes the kind of details that different health teams are often sharing already through telephone calls, letters and faxes. JUYI makes the information available electronically, in a view-only format.

The types of information include:

  • Medication and any changes to it made by a clinician
  • Medical conditions
  • Operations/treatment received
  • Contact details for next-of-kin and others involved in care
  • Tests that GPs or hospital clinicians have requested or carried out
  • Appointments (past and planned) and recent visits to the Out of Hours GP and Minor Injury Units.
  • (To follow phase one) Documents, such as care plans and letters about treatment (for example “discharge summaries” following a hospital stay).

An information-sharing control group (including clinicians and patient group representatives) has been set up to control and monitor which data is shared and who should see it. The group also reviews and controls any changes to the way the information might be used.

As treatment within the NHS develops, use of this information might allow clinicians to improve the quality of your health and care services, ensuring they are safe, effective and well managed. Details of any developments will be published on this website.

Who will have access?

Just like existing controls on healthcare information, staff should only gain access if they have a legitimate reason to do so and it is directly relevant to the treatment you are receiving at the time.

JUYI is a secure, encrypted system and keeps a record of everyone who has viewed patient details, when they accessed it and the information they were viewing.

Access to shared care information is monitored and checks will be carried out by the information-sharing control group (clinicians, patient group representatives and data protection specialists) to ensure the system is being used properly. They agree what types of data are shared and who should see it.

Can I change my mind?

Yes.

Whether you are happy to share your information or you decide to opt-out, you can change this decision at any time by contacting your GP Practice.

Can I see my information or could someone ask to see it on my behalf?

Yes.

You have the right under the Data Protection Act 2018 to request access to any information that organisations like the NHS hold about you. This includes copies of paper, electronic and hybrid patient health records.

For more information about how to view your health care records write to:

NHS Gloucestershire ICB

Sanger House,

5220 Valiant Court,

Gloucester Business Park,

Brockworth,

GL3 4FE

Email: glicb.enquiries@nhs.net

Tel: 0300 421 1500

To discuss receiving information in other formats (e.g. other languages, Braille, audio and large print) speak to Patient Advice and Liaison Services by calling Freephone 0800 015 1548.

For information about how to view your social care record visit the Data Protection and requesting access to your personal information section of the Gloucestershire County Council website.

Will everyone who has access be able to see all my information?

No.

Access will only be given to an agreed set of local health and social care professionals and the intention is that they will only be able to view information appropriate to their role (e.g. doctor, nurse, physiotherapist).

The type of information to be shared and how much each role can view will be agreed and monitored by the information-sharing control group. This has GPs, hospital doctors, nurses, a selection of other health and social care professionals and patient representatives as its members.

How will you prevent the information being used inappropriately?

Healthcare information, like all confidential patient data, will not be made public, used for advertising or sold.

The same principles apply to this information. Existing codes of conduct for NHS and local authority staff mean they must respect patient privacy and keep all information about patients safe.

Could information be shared more widely?

JUYI is about providing access to existing but currently unlinked medical record systems, rather than creating a new system. It provides a snapshot of records from elsewhere in the care system.

Use of this information is already governed by existing rules and regulations to protect patient confidentiality. The NHS takes data management and security of confidential information very seriously and appreciates that public confidence in the way we handle personal information is paramount.

Qualified clinical and social care staff are also regulated by their own professional codes of conduct which state that confidential patient data should not be accessed without an appropriate reason, made public, used for advertising or sold.

Although extremely rare, there are times when information can be passed on.

 

Examples

Under the Data Protection Act 2018 there is an exemption in relation to the disclosure of personal data where it is made for the purposes of crime prevention or taxation purposes.

This would need to be considered on a case by case basis, and only allows the disclosure, rather than requiring it.

A data controller (the person who controls and would have authorised the release of any information) would, if challenged, need to justify to the Information Commissioner’s Office or the court in question why that information was released.

There would need to be clear evidence, rather than simply a suspicion, before any details were passed on to appropriate organisations for any further investigations.

More information about how we handle information is available here.

The General Medical Council has guidance for clinical staff about disclosing information – to protect individuals or society from risks of serious harm, such as serious communicable diseases or serious crime, for example.

More information is available here.

The Health and Social Care Information Centre also has information about how NHS and local government social care staff should handle sensitive information.

More information is available here.

You are entitled to see information held by each of the different NHS organisations. More information is available on the NHS Choices website.

Can a relative who is a health and social care professional access information as part of their role?

Health and social care professionals would not normally be involved in providing treatment for members of their own family.

Staff should only gain access to patient information if they are directly involved in your care or they have a legitimate reason to do so.

As with existing details, any attempts to access information inappropriately would be regarded as a serious breach of confidentiality and could be subject to disciplinary action. Access to shared information is strictly monitored.

I am a parent/guardian or have power of attorney over someone and I don't want their records to be made available. What do I need to do?

You can request that someone you are responsible for is opted out. This request will be considered by your GP who will make the final decision.

While your GP will respect your views and may wish to discuss them with you, they could decide that it is right that details are shared – usually on the grounds of patient safety and providing the best and most appropriate care.

Are dentists and organisations in private medical care involved?

No.

JUYI will not be available for dental practices and private medical care providers and including them has not been discussed in detail, so far.

They could be considered for inclusion in subsequent phases but only if technical and patient consent issues can be resolved.

Community pharmacies and chemist’s shops are not part of the project at present.

NOTE

Sharing with dentists and private medical care providers, where necessary and with patient consent, will continue in the same ways that it does at present.

What about people who live in Gloucestershire but are registered with a Welsh GP practice?

Only patients registered with Gloucestershire GP practices are included in JUYI.

Some patients in the Forest of Dean attend branch surgeries of Welsh GP practices – part of NHS Wales.

These patients are not part of JUYI although it is expected that information sharing agreements will develop over time with neighbouring organisations – particularly for people who live near the county borders.