My Health and Care Record

Patients Know Best (PKB) is the platform that we are using to host My Health and Care Record. PKB is an approved provider of NHS services and already works in many health and care settings in the UK.

The person named on the email from PKB or My Health and Care Record may work at your organisation or project delivery team for Sussex Health and Care Partnership.

They do not have access to your health data, they are only able to administrate your invitation. They have signed the appropriate confidentiality agreements to carry out some administrative work on behalf of the organisation.

If you choose to register for My Health and Care Record you will have full control over who can or cannot see the data held within your record. Your doctors and other health care professionals will only have access to the elements you choose to share.

We use something called privacy labels, which is a mechanism within My Health and Care Record for you to label each data point in your record with one of four categories.

Data held in My Health and Care Record does not change or affect data held in clinical systems, for example GP practice systems.

You can then decide who has access to each one of the categories, and this determines what they can see in your record. Information about how to change the sharing of data in your record after registration is available

Your My Health and Care Record is very likely to have been created by one of the Hospital Trusts in Sussex, who have all started using My Health and Care Record is some way.

At some stage you may have been a patient at one of the trusts; if this was some time ago they are likely to have an old address for you and this has been passed across into your PKB record from their systems. Please be assured that this incorrect address on My Health and Care Record has no impact on services and does not update other healthcare systems.

You are able to update your address directly in PKB to make your record accurate. You still need to notify any healthcare providers of a change in address should you move.

If you are having problems downloading or registering for the NHS App please contact the NHS App team for help. If you cannot access your My Health and Care Record, please contact the NHS organisation you are receiving care from, East Sussex Healthcare NHS Trust, University Hospitals Sussex NHS Foundation Trust, Queen Victoria Hospital NHS Foundation Trust or Sussex Partnership Foundation Trust.

No, this does not affect your access to existing services. However, the NHS App and My Health and Care Record integration is a unique way for us to improve how you can work with the services you receive from a growing group of your health and care providers, including local hospitals; we will continue to add new features in the coming months.

Once you have registered and you can see your record you will find an “access log” which shows you all the activity on your record – who did what and when. This will include when you logged in as well. You can hide this by clicking the ‘Hide my own access’ box.

There are two main computer systems that practices use, SystmOne and EMIS. We are working with NHS Digital on the integration of the NHS App with My Health and Care Record and Patients Know Best (PKB).

Through the NHS App patients and service users will have access to the summary care record which shows you the same information that direct integration with EMIS offers i.e. Allergens, medications, diagnoses and demographics. The only difference is you do not get an alert to say there has been a change to your record.

Separately, we are working with PKB (on behalf of My health and Care Record) on a solution that replicates the offer to EMIS practices.  We are currently working up the details and timelines for this solution.

Professionals and users can enter information into the record. One of the benefits of using My Health and Care Record is that you will be able to see if any data or information held by your healthcare providers is incorrect or inaccurate, and get it corrected. Patients can view which organisation or which member of staff has added information to their record and when.

Each bit of information that is entered will have a source to identify where the data has come from.  You should contact the person or organisation listed next to the information to see how this can be corrected. Most organisations have an internal process to do this.

Our ambition is that platforms and products work together so that you (the patient/service user) gets the best possible experience.  We hope the benefits of patient online access and what it offers can be covered by the NHS app and PKB integration (on behalf of My Health and Care Record).

We are currently putting together a document that details all the digital platforms and products so we can compare the information and be sure that all the benefits of patient online access are covered by the NHS app and My Health and Care Record.

The aim is to streamline processes and minimise the need to use different applications.  We are envisaging the NHS App being the ‘front door’ to primary care.

The summary care record, what you see when you access the NHS App, enables patients to access the same data points that direct integration with EMIS offers. NHS App and PKB integration (on behalf of My Health and Care Record) is an all-in-one process that offers everything a patient (and their health care team) needs to manage their care – with a single gateway ‘NHS front door’ to the group of people who provide care, complete with access to their personal health record, which is Patients Know Best (PKB).

This integration extends the availability of the NHS Apps GP data. Registered patients of My Health and Care Record can sign in to their health record from the NHS App to access their information from other settings too – Acute Trusts, Mental Health Trusts, community healthcare providers etc.

Please remember that ultimately you (the patient/service user) will have the choice to use what you think is best for you and your circumstances.

We hope that the relationship with SystmOnline will be similar to EMIS and described in Question above.

You can log in on your device or show them your data, or you can invite your clinician(s) to access your record. This is entirely controlled by you and you can also control the level of access they have (via allocation of privacy labels – see question about privacy labels for a description).

You can upload old reports, care plans, test results, videos, and audio files up to 10 GB, and store them securely and share this data with healthcare teams from the comfort of your own home in real-time.

The record may contain a list of your medications both current and past. Notes about drug interactions will not be recorded in the medications section. If a user is advised about drug interactions and it is detailed in a clinical letter, this can be saved to the record.

Practitioners will only have access to the elements you want to share. We use something called privacy labels, which is a mechanism within My Health and Care Record for you to label each data point in your record with one of four categories.

You can then decide who has access to each one of the categories, and this determines what they can see in your record. For example, if you had a carer who you did not want to view any data in your record relating to sexual health, you would not give them access to ‘Sexual health’ and they would not be able to see any data with this label. The four categories are as follows:

• General health – this can be used for most of the health record and includes information that most health professionals will use to deliver care
• Mental health – this can be used for anything relating to a mental health diagnosis such as depression or anxiety.
• Sexual health – this can be used for anything relating to your sexual health and includes reproductive health and HIV
• Social care – this can be used for care from local authority social care team, including disability funding and home care services.

As long as you do not share your password and log off successfully, it is safe to log into your record from a public device. Patients and service users should be encouraged to be aware of their surroundings to ensure that they are in an area where it is safe to access their record.

One of the benefits of My Health and Care Record is that it is as easy to use on a mobile phone as it is on a computer. This allows patients or service users to access their records wherever they are and can easily “take” their information with them to appointments using their mobile phone.

The Our Care Connected programme, which the My Health and Care is part of, is continuously linking in with other areas of the country that have successfully deployed similar platforms.  We are always looking at other counties and to see how they deploy technology in their own health system, but very few have a system as complex as the NHS.

Currently Patients Know Best (PKB) who power My Health and Care Record will not allow registration for people under 16-years via NHS login or via token registration (QR code or URL). The only way to register under 16’s is via email registration. Please contact your NHS organisation to see if this is appropriate.

It’s all about personal preference and down to the individual. As with the question below we will also look into this with a safeguarding lens on to make sure that we are providing people information about what to do when they don’t want someone to see their record.

Patient/service users have the choice and ability to share their record.