Frequently asked questions

Why does it say Powered by PKB on some of the pages? Who is PKB?

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.

I received an email from PKB on behalf of My Health and Care Record that names a person I don’t know – do they work at the GP surgery? Who are they and why are they trying to access my data?

The person named on the email from PKB or My Health and Care Record does not work at your practice but is a member of the 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 practice.

Can I choose to not share my data?

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.

How do I allow an NHS team access to the data in my record?

You can then decide who has access to each one of the categories, and this determines what they can see in your record. For information on how to change the sharing of data in your record after registration, information can be found here: https://manual.patientsknowbest.com/patient/sharing

Why is the address in my record wrong? How do I change it?

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. From October 2020 you would have been able to update your address directly in PKB to make your record accurate – this would not have updated other systems though. You still need to notify any healthcare providers of a change in address should you move.

I can’t complete NHS App registration or activate My Health and Care Record – who do I contact?

If you are having problems downloading or registering for the NHS App please contact the NHS App team for help – https://www.nhs.uk/using-the-nhs/nhs-services/the-nhs-app/help/. If you cannot access your My Health and Care Record please click on the turquoise Contact Us button on this page to find out who you should contact.

If I register for this do I lose access to my existing online access (i.e. EMIS online)?

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.

Can the patient/service user know by looking at their record on the internet if anyone has accessed their file?

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.

What about SystmOne practices?

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.

Who is responsible for entering information onto the file and will disagreements be recorded?

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.

Can I see who has entered incorrect information and how do they correct it?

Each bit of information that is entered will have a source to identify where the data has come from.  You can check with your practice to see how this can be corrected.  Most practices have an internal process to do this.

Will this make patient online access (platform) redundant?

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 into 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.

What is the relationship between SystmOnline and patient online access?

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

If I go to my private dentist will they have access to my record?

You can either log in on your mobile device or show them your data, or you can invite your dentist 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)

If I have private care would they have access to my record?

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).

Can you upload your own information, letters or information from private health provider?

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

What about complementary and alternative practitioners, will they have access to my record? Are notes about drug interactions going to be recorded?

You can log in on your device and show your data to your practitioner, or you can invite them 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)

The record will 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.

 Will practitioners have access to all of my record or only the parts that I want to give them access?

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.
Is it going to be safe if I access my record from a computer that is not my own?

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.

In what formats will it be available in? Mobile or web-base?

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.

Are we able to get help from other countries who have been successful in this?

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 countries and to see how they deploy technology in their own health system but very few have a system as complex as the NHS.

Would bad news be available on the record before the patient has been informed?

No, when integration is in place to deliver blood and radiology results, there will be a robust process in place to ensure a patient or service user has first been informed by a clinician before they find the information on their record.

How would access to records be handled for patients who are under 18? Would there be an age limit on who gives access?

 There have been discussions about this with Preston Park Community PCN and it’s been agreed that the practice policy on records would be followed. Please contact your practice to find out what their policy is on this subject.

Under what circumstances would you not give people access to your record?

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.

Can the patient allow anyone to see their record?

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

Partners