Patients Know Best (PKB) is completing integration with the GP record for patients in England. It means the PKB record will automatically store for a patient a copy of the data the GP has released to that patient. This is using the IM1 Patient Facing Services (PFS) API.
PKB is integrating with both EMIS and TPP, so covering 100% of GP surgeries in England. Connection with EMIS is expected by the end of September 2024/early October 2024. Connection with SystmOne is due to follow later in 2024.
A phased rollout is expected to start from January 2025.
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What GP data will PKB store for the patient?
PKB will store data the GP practice has already authorised for release to the patient. This is the same data set dataset the patient can see in the NHS App.
In Phase 1, users will start to be able to see demographic, appointment, medication, and diagnoses (conditions) data from their GP Practice. In Phase 2, PKB will also store for the patient the GP observations (including measurements and test results), allergies & immunisations & documents. These will only be available via our FHIR APIs when the patient shares their PKB record.
In Phase 32, the patient will see the more data from Phase 1 in the PKB user interface (UI) & we will be storing documents.
Phase 1: GP appointments, conditions and medications
Appointments | Diagnoses | Medicines |
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Phase 2: Patient can see full GP data
Allergies | Measurements | Test Results | Immunisations | Documents |
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Do patients need to do anything?
Patients will need to log in to PKB using NHS Login and selectWhat will the patient journey look like?
STEP 1 | STEP 2 | STEP 3 | STEP 4 | STEP 5 |
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For the first time the patient must log in with NHS login to authorise | The patient enters their | The patient confirms they would like a copy | Thereafter every time a patient logs in PKB pulls the latest record | Patient sees information the GP has already authorised for release |
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What does the patient need to do?
There is one-time one-step process for the patient. The patient has to log in with the NHS login and choose 'Get my GP data' when prompted.
Please note that The NHS login is only necessary for the initial login to commence receiving GP data. Patients are not obligated to continue using NHS login as their sole login method to access their GP data in PKB or receive subsequent updates.
Do patientsthis one time to allow storing GP data. After that the patient can log in any way they prefer, including with the PKB login.
Does the patient need to obtain credentials from their GP Practice
to view their GP data in PKB?
No. Patients will need to have online services enabled against their patient record at their GP practice, but they do not need to obtain or enter their online services credentials to make use of this integration.
Whose giving PKB permission to get GP data?
NHS England (NHSE). NHSE are the co-controller to GP-entered data with the GP Practice. NHSE oversee the IM1 integration process and will assure our use case and Product for the use of the IM1 PFS API. PKB are merely surfacing data as a Processor on behalf of NHS England.
How are privacy labels set for GP data?
Appointments and medications will automatically receive the 'general health' privacy label. Diagnoses will be mapped to existing privacy labels e.g. General Health, Mental Health where a privacy label mapping already exists. Diagnoses without an existing privacy label mapping will be assigned a new 'Privacy label not set' privacy label. Data with this new label is restricted to patients or individuals with all four consents. Patients can change this privacy label if they wish. To find more information on how to change a privacy label here.
Why can’t a patient see any Using NHS login means neither the GP practice nor the patient needs to spend time on credentials.
When is GP data updated?
Whenever a patient logs in, PKB pulls the latest GP record. The patient can use PKB login or NHS login.
Why can’t a patient see GP data?
There are several reasons that could account for a patient not seeing their GP data in PKB:
Patient not used NHS login: The patient has not logged in with NHS login to trigger the data integration
Patient chose Not now: The patient chose ‘Not now' when prompted to get their GP data during the login process. The patient will be prompted with the 'Get your GP data’ screen again one month after selecting ‘Not now'
Data incoming: Although a patient may have selected 'Get my GP data', PKB might still be in the process of retrieving the GP data. The retrieval and display of PKB completing data retrieval: Retrieving and showing GP data can take PKB a few minutes and may vary . It varies based on factors such as record size and demand at the time.
No GP not switching on online services account: Patients must have online services set up at their GP Practice. If a patient does not have an online services account, the patient should contact their GP Practice to request access to online services. Recently registeredSee the sections below on How can a patient request access to online services and How does a GP practice enable online services for a patient.
GP does not have data: If a patient has recently registered at a GP Practice, there may not be GP data available in the patient's record yet.
Access GP not grantedreleasing data: The GP Practice has not permitted the release of the patient's online services data within their clinical system. Individual items can been restricted e.g. a single diagnosis (condition), a service can be restricted e.g. all diagnoses (conditions), or date range restrictions can be applied by the GP Practice to only allow release of data after a specified date. Patients are encouraged to contact their GP Practice directly to request access to their online services data. GP surgeries are required to give all patients in England online access to new information as it is added to their GP health record since 31st October 2023 (unless a patient has individually decided to opt out, or any exceptions apply).
Why is some GP data missing?
Several reasons could explain why some GP data is missing:
Exclusions: Specific data points may be excluded from aggregation and therefore do not display within PKB based on SNOMED CT codes. The list of excluded codes includes various categories such as gender-related issues, termination of pregnancy, assisted fertilisation, sexually transmitted disease, safeguarding, and sexual health procedures.
Individual data points hidden: GP data may be missing if the GP Practice has chosen not to make certain data points available in the patient's online services record.
Access not granted by GP practice: EMIS GP practices can control access to data types on an individual service basis e.g. appointments, test results, problems etc can be enabled/disabled on an individual basis and also restricted by date. SystmOne GP practices do not enable/disable access on an individual data type basis e.g. appointments, test results, problems etc, but can control patient access to their online record via dates. Patients should contact their GP Practice to request access to their full online clinical record with access to all services. Patients can request to see all data since birth if they wish, but GP practices might have their own processes and policies as to the dates they are willing to release GP data from.
Date ranges: Data in the PFS API is inclusive of the date set by the GP Practice against the Online Services access. GP practices are required to give all patients in England online access to new information as it is added to their GP health record since 31st October 2023 unless the patient has individually decided to opt out or any exceptions apply.
How often will GP data be refreshed?
PKB will retrieve the latest GP data for every connected patient upon successful patient login.
How can a patient request access to online services?
GP practices usually require patients to attend the GP practice in person with at least one form of ID e.g. drivers license, passport or birth certificate to enable online services.
How does a GP practice enable online services for a patient?
EMIS: the EMIS GP Practice users online services guide has training resources from EMIS, as well as step by step instructions created for EMIS GP Practice users by PKB.
SystmOne: the SystmOne GP Practice users online services guide has training resources from TPP SystmOne, as well as step by step instructions created for SystmOne GP Practice users by PKB.
How can a GP practice increase online services access for a patient?
EMIS: the EMIS GP Practice users online services guide has training resources from EMIS, as well as step by step instructions created for EMIS GP Practice users by PKB.
SystmOne: the SystmOne GP Practice users online services guide has training resources from TPP SystmOne, as well as step by step instructions created for SystmOne GP Practice users by PKB.
How can a GP practice reset online services for a patient?
EMIS: the EMIS GP Practice users online services guide has training resources from EMIS, as well as step by step instructions created for EMIS GP Practice users by PKB.
SystmOne: the SystmOne GP Practice users online services guide has training resources from TPP SystmOne, as well as step by step instructions created for SystmOne GP Practice users by PKB.
Data quality
Will there be duplicated GP data from multiple sources?
PKB has established a priority order for receiving GP receives data from various sources to minimise duplication. The priority order is EMIS IM1 Bulk (ES) → EMIS & TPP IM1 PFS API → DDS GP. This will mean if a patient has GP data from the EMIS IM1 Bulk (ES) we will show this data as a priority over data received from the EMIS IM1 PFS API.
Why is somemultiple sources about each patient. In some regions this can include multiple copies of a patient’s GP record. We keep all this data in the record for each patient to ensure maximal coverage for all patients.
PKB only shows one copy of GP data to the patient. PKB prioritises EMIS IM1 bulk extract service data over the data from the EMIS IM1 PFS API integration. This is because the bulk extract service data is more accurate (with original codes); more frequent (updated daily); and more comprehensive (it goes beyond data manually released to the patient).
Why is a past medication showing as current?
PKB determines whether a medication is current or past based on the status and /or the end date against the medication. If a status is not provided for a medication, it will be displayed as current medication unless there is an end date in the past. If a status is provided, only medications with a status of ‘active' or 'unknown’ will be displayed as current medication, unless there is also an end date in the past. Currently, TPP (SystmOne) does not provide a status or an Currently, TPP’s SystmOne provides neither status nor end date for medications via the PFS API. ThereforeFor now, PKB will display all medications from SystmOne , regardless of whether they are past or present, will be displayed as current medication in PKBmedications. PKB has raised this with both TPP and NHS England.
Why
are some diagnosesis is a past diagnosis showing as current?
PKB determines whether a diagnosis is current or past based on the status and /or the end date against the diagnosis. If a status is not provided for a diagnosis, it will be displayed as a current diagnosis unless there is an end date in the past. Currently, TPP (SystmOne) does not provide a status or an Currently, TPP’s SystmOne provides neither status nor end date for diagnoses via the PFS API. ThereforeFor now, PKB will display all diagnoses from SystmOne , regardless of whether they are past or present, will be displayed as current diagnoses in PKBmedications. PKB has raised this issue with both TPP and NHS England.
How can a patient request access to online services?
GP practices usually require patients to attend the GP practice in person with at least one form of ID e.g. drivers license, passport or birth certificate to enable online services.
How can a patient find out which patient record system their GP Practice uses?
A patient can ask their GP Practice what patient record system they’re using e.g. SystmOne or EMIS.
How does the GP practice enable online services?
EMIS
1. The GP Practice staff member will need to retrieve the patient record and navigate to the EMIS ball → Registration → Online users
2. Click on ‘3. Online Services’
3. Click on ‘Add Online user…’ and then ‘Add current patient’
4. Add identity verification for the patient e.g. passport, birth certificate, driving license
5. Select the Services available to a patient
6. Select Record Access and enter a date. NOTE: The GP Practice might have a policy for dates to when records can be accessed from. Patients can request to have full access since birth to get the most of their GP data.
The EMIS GP Practice staff can find further information on how to enable Online Services, and troubleshoot issues with Online Services access by viewing user manuals in their EMIS now portal.
SystmOne
1. The GP Practice staff member will need to retrieve the patient record and navigate to the Online Services node. Note: The clinical/administrative tree that is displayed down the left hand side within the SystmOne patient record is configurable so the placement of this node within the tree(s) can vary practice to practice and user to user.
2. Click on ‘Register for Online Services’
3. Add minimum requirements for identity verification for Online Services is 1 document(s) or vouching by 1 staff member(s).
4. The GP practice staff member is able to generate and provide the Online Credentials on this screen and either provide these verbally, via printout or send via either SMS or email
5. The staff member can also select the level of access. For SystmOne you will require either the Detail codes or Full clinical record. The Full clinical record will provide the patient with the highest level of access to their record. GP Practices often have their own organisation presets to specify what data is made available and from which date. A patient is entitled to request access to their full record from birth if they wish to be able to access the most of their GP data.
NOTE: GP staff members will need to ensure that a review has been performed for either the full clinical or detailed coded record, depending on which the patient has access to. This is done by selecting Set full/codes clinical record start date(s) via the Online Services node.
The SystmOne GP Practice staff can find further information on how to enable Online Services, and troubleshoot issues with Online Services access within SystmOne itself by navigating to Help → Support and FAQs → SystmOnline.
The SystmOnline user guides are also available to SystmOne staff member on this page by selecting ‘Documents & Training Guide’ and navigating down to SystmOnline.
How can a the GP practice increase online services access?
EMIS
1. From the Online Services in the Registration section of the patient record, the GP Practice user will need to select 'View online user'.
2. Click on ‘Edit User’
3. The user can select whether to show all data or customised access and increase the level of access for the patient
SystmOne
1. From the online services node in the patient record, the GP Practice user will need to select 'Add or remove services'
2. The GP Practice user can increase the level of access from the ‘Amend Online Services’ dialog
How can a GP practice reset online services credentials if access has been lost?
EMIS
1. From the Online Services in the Registration section of the patient record, the GP Practice user will need to select 'View online user'.
2. Click ‘Reset account key’
SystmOne
1. From the online services node in the patient record, the GP Practice user will need to select 'Reset third party links'.
2. Then choose to provide the credentials to the patient as a print out, SMS, email or verbally.
Information governance
Who gives permission to store GP data in PKB in PKB?
NHS England (NHSE). NHSE and the GP Practice are the co-controllers to GP-entered data. NHSE oversee the IM1 integration process and assure every use case and product for the use of the IM1 PFS API. PKB is showing data as a processor on behalf of NHS England.
The data PKB is showing is GP-entered data that the GP Practice has released for the patient to see.
What are the privacy labels for GP data?
Appointments and medications automatically have the 'general health' privacy label. PKB maps diagnoses to privacy labels using SNOMED CT codes. For SNOMED CT codes that the PKB clinical team has not yet mapped, PKB software defaults to 'Privacy label not set'. The PKB clinical team regularly maps new SNOMED CT codes as they arrive.
Only patients or individuals with consent to see all four privacy labels can see unmapped diagnoses.
Patients can manually change this privacy label if they wish. To find more information on how to change a privacy label here.