Welcome to your Patients Know Best (PKB) Account
Welcome to Patients Know Best (PKB).
This page explains how and why we use your personal information, what your rights are and how you can exercise your rights in relation to this use of your personal information.
We provide this information so that you can decide whether or not to create your PKB Account, through which you can share your information with the professionals who provide your care and make some decisions about how they share your personal information.
To learn how to use your Account, the user manual is at: https://manual.patientsknowbest.com/
As well as patients, the PKB Service can be used by three other types of users:
Information on these roles is found in the PKB manual: https://manual.patientsknowbest.com/
We aim to bring you your health records from anywhere, and for you to control who sees these records.
In your PKB Account your information is divided into four areas:
After creating your PKB Account, you can decide who can see what, e.g. you may want your doctor to see everything but your family to only see your general health. You can also ask others to decide on your behalf, e.g. your doctor can share with other doctors for you. If an Organisation has information about you, the Organisation can send that information via PKB to you, e.g. automatically sending discharge letters to your PKB Account.
The PKB Service will search other databases to show you information that may be relevant to you. You decide how to make use of this information, e.g. if we tell you about a clinical trial, you decide whether or not to take part. Your information is not shared with anyone until you decide.
We do not use or disclose your information to anyone except as described in this Privacy Notice.
If you send us a request for help (details below) you are likely to tell us your name and email address. We will only use this information to provide the help you have requested.
PKB may further use your information:
PKB may contract companies to provide services on our behalf, such as our support desk or to answer queries about the Service. We give those organisations access only to the minimum personal information to help you with your queries, such as your IP address (your computer's location) or e-mail address. They are bound by a contract and a duty of confidentiality. These companies cannot access your health information, which is encrypted.
PKB fulfils its duty of confidentiality through clauses in employment contracts, corporate policies covering confidentiality and security, providing ongoing training to all employees and requiring the same of any company we contract to support us.
Please ensure when providing information about other people, for example, including Personal Data about a family member, that you have permission to do so.
This is a complex area of data protection law. In general, to comply with the legal obligations of Professionals and Organisations in maintaining accurate health records, the following occurs:
We explain in more detail below:
PKB Accounts
Once you create a PKB Account, you are in control of who can access your record and what they can see. The law may override your wishes, e.g. a court order stipulates access by another individual or authority, or in other very rare exceptional circumstances.
You can edit or hide information you have added until it has been viewed by a health or social care professional. After a Professional has viewed information in your PKB Account it becomes part of the PKB Record and will be retained by the Organisation. This retention period will vary across countries in Europe relative to national guidance. You cannot edit or hide information others have added. If you would like to change or hide information that has been added by an Organisation about you, for example, if it is incorrect, you must contact that Organisation to request this. All of your PKB health data is held securely and is encrypted in storage and in transit.
Children's records
The only exception to the above function is for children's records. Professionals have control to ensure the safety of the child's care. Full control of your record is possible from 13 years old, except in special circumstances e.g. to protect your health.
PKB Records
If a Professional has viewed your PKB Record, it cannot be deleted. This is because Professionals may make decisions about your care based on information in your PKB Record. This is a similar case to if you had written a letter to your doctor - it is then a part of your doctor's records about your care and cannot be easily removed. Typically, adult health records are deleted in line with national retention guidelines after last access by the Organisation, but PKB will only delete your record once an Organisation asks us to. Where multiple Organisations contribute to your PKB Record, each Organisation will need to provide a deletion instruction for data where they are a controller of e.g. Organisation A cannot request deletion of data contributed by Organisation B.
Emergency care
In an emergency, Professionals may override the limitation you have put on access to your information. This is called 'Break the Glass'. When they do this they must declare the reason they have for accessing your record. PKB records this action, and the Organisation reviews it. Break the Glass is only for emergencies when you may lack the capacity to consent (e.g if you are unconscious) and when (in the Professional's clinical judgement) it is in your vital interest that the Professional sees your record.
Your rights
You may ask your Organisation to "Disable Sharing" if you do not wish to share your record with any Professional, and to prevent Professionals from being able to Break the Glass. You should think carefully before asking for this and review your decision periodically. With Disable Sharing, Professionals can only see the information about you they have added to your record, and no other data from any other party. More information on Disable Sharing is available here: https://manual.patientsknowbest.com/patient/sharing#h.p_sGdbVe_KdzdG
PKB is committed to protecting your privacy.
We cannot see your health record and have no direct control over your information. We store all of your information on secure servers and encrypt all of your information. Our security measures are tested at least annually to standards set by the UK National Cyber Security Centre.
Organisation-contributed information (PKB Record)
To find out the legal bases for an Organisation that provided your information, you should check their privacy notice.
For some Organisations, PKB has a Joint Controller Arrangement (JCA) that sets out what data each party is responsible for. You can see a copy of the template JCAs below, although the specifics of the agreement may vary slightly from Organisation to Organisation:
For other Organisations, PKB has an Information Processing Agreement, which says that PKB is a Processor for that Organisation's data.
Please see the following list for a breakdown of Organisations.
PKB's responsibilities in the Joint Controller relationship are:
PKB's responsibilities in the Processor relationship are:
Providers are responsible for:
PKB relies on the established legal bases for provider-contributed information that forms part of the PKB Record in its relationship with Organisations as a Joint Controller or a Processor.
Patient-contributed information (PKB Account)
Once you create your PKB Account, PKB is the controller for the information you contribute and relies on the following legal bases:
Organisations that you share with will become independent controllers for the shared data and may retain this shared data in line with their policies.
PKB's Data Protection Officer is David Stone.
You can write to our DPO:
David Stone
Patients Know Best
St John's Innovation Centre
Cowley Road Milton
Cambridge
CB4 0WS
Email: dpo@patientsknowbest.com
To contact PKB's Support Team: https://www.patientsknowbest.com/contact-us
Further information about PKB is available via our website: https://patientsknowbest.com
EU Autoriteit Persoonsgegevens (Dutch Data Protection Authority) Registration and Complaints
You can raise a complaint with the Regulator here: https://autoriteitpersoonsgegevens.nl/en/contact-dutch-dpa/contact-us
A User's continued use of the Service constitutes the User's agreement to this privacy notice. If you feel you need further information please refer to The PKB Manual and the PKB Information Governance Wiki below or contact us through https://www.patientsknowbest.com/contact-us
Please Note: If you registered with PKB prior to 2nd February 2022, please see the previous Privacy Notice related to your registration and consent.
Privacy Notice - Version 5.3 (EU) - Updated: [25th March 2022]
Welcome to your Patients Know Best (PKB) account. This is a summary of our account service agreement with you.
Patients Know Best (PKB) provides software to help patients manage their own health information. PKB puts you, the patient, in control of all health information about you that is added to PKB. PKB enables you, the patient, to control who can use this information with you.
To start using your PKB account, a PKB customer (e.g. your hospital) will verify your identity. And you must agree to this Account Service Agreement.
You must be at least 13 years old or have approval from your parent or legal guardian. You can stop using the Patient Access Service at any time and you own the copy of the data in your record.
You must obey the law, choose a secure password, and notify PKB or our customer of any security problems. You are responsible for information you input into PKB.
If you find a problem with data within your PKB record from a PKB customer, e.g. your hospital doctor, please contact that clinical team. If you find a problem with data you entered into PKB, e.g. symptoms, messages and output from home devices, please contact PKB directly via help@patientsknowbest.com
Questions related to data protection and privacy can be addressed to Patients Know Best at:
David Stone
Patients Know Best
St John's Innovation Centre
Cowley Road Milton
Cambridge
CB4 0WS
Email: dpo@patientsknowbest.com
Patients Know Best's complaint procedure is documented here.
Last updated: August 2022
At Patients Know Best we store patients' data for our customer institutions ("Customer Institutions"), along with software and service tools that help Customer Institutions to manage the data ("Provider Service"). References to your customer institution in this Service Agreement mean the legal person who employs the clinical, health or care staff who perform healthcare services for you. Your customer institution will ask you to read this Service Agreement if it uses the Provider Service. This Service Agreement sets the terms and conditions that apply between the patient ("you") and Patients Know Best ("we", "us", "our") in relation to the Provider Service. Under the Provider Service, Customer Institutions who use PKB with you will each store their records about you with PKB, for use by your teams of professionals. You cannot access your data directly, yourself, via the Provider Service.
When a Customer Institution uses the Provider Service, you also have the opportunity to receive a service directly from us. This service ("Patient Access Service") allows you to access data relating to you directly, along with tools to help you manage the data and who can access it. You can start using the Patient Access Service by confirming to us or the Customer Institution that you want the service, and by helping the Customer Institution or us to verify your identity.
This Service Agreement applies to Patients Know Best Account software and service including updates that you use while this Service Agreement is in force. The Patients Know Best software and service, the Provider Service and the Patient Access Service are referred to collectively in this Service Agreement as the "Service", and the account where your personal data is stored and accessible within the Service is referred to as the "Account".
Please note that we do not provide warranties for the Service. The Service Agreement also limits our liability. These terms are in sections 9 and 10 and we ask you to read them carefully.
You must be an authorised user of certain participating institutions to be eligible to use the Patient Access Service. You must be at least 13 years of age, unless your use of the Patient Access Service is approved by your parent or legal guardian as part of the process of signing you up and verifying your identity. You may start using the Patient Access Service as soon as you have finished the sign-up and verification process. Support is available via help links. You may cancel the Patient Access Service at any time. You are able to store materials for use in connection with the Patient Access Service. The materials you store on your Account are yours. You may only transmit and store content that is legally permissible and appropriate for the Service.
In using the Service, you will:
In using the Service, you may not:
The Service is intended for you to use to conveniently access and manage your personal data relating to your health via the Account. You may decide to authorise others, including Customer Institutions, to have access to your personal data via the Service. The information that you access via your Account may not always be accurate or up-to-date and you should verify its accuracy with your appropriate Customer Institution before you act on the information. The accuracy of data and information and the timescales within which it is inputted into the Service is the responsibility of the Customer Institution or other legal persons who input the data or information into the Service.
Only you may use your Account. You are responsible for all activity that takes place with your sign-in credentials. Non-personal and commercial Accounts are prohibited on the Service in the absence of additional signed agreements with Patients Know Best that explicitly allow such Account use.
We consider your use of the Service to be private. However, we may access (or permit access to others, where lawful) or disclose information about you, your Account and/or the content of your communications, in order to: (1) comply with the law or legal process served on us; (2) enforce and investigate potential breaches of this Service Agreement, including use of this Service to participate in, or facilitate, activities that violate the law; or (3) protect the rights, property, or safety of Patients Know Best, its employees, its customers or the public. By using the Service you consent to the access and disclosures outlined in this section 6.
We may use technology or other means to protect the Service, protect our customers, or stop you from breaching this Service Agreement. These means may include, for example, filtering to stop spam or increase security. These means may hinder or break your use of the Service.
In order to help us to provide and further develop the Service, we may collect certain information about Service performance, your machine and your Service use. We may automatically upload this information from your machine. This data will not personally identify you. You may read about this information collection in more detail in the privacy notice.
You will not copy, disassemble, decompile, or reverse engineer any software, code, script or content included in the Service, except and only to the extent that the law expressly permits this activity. You must comply with all domestic and international export laws and regulations that apply to the software. These laws include restrictions on destinations, end users and end use.
We may provide you with credentials on our authentication network to use with the Service. You are solely responsible for any dealings with third parties who use our authentication network. This Service Agreement applies to you whenever you use the credentials you obtained with the Service. We may cancel or suspend your access to our authentication network for inactivity, which we define as failing to sign in to our authentication network for more than 12 months. If we cancel your credentials, your right to use our authentication network immediately ceases.
There are lots of factors that can affect whether or not the Service is available, including the availability of your internet connection. The accuracy, quality or timeliness of your information is mainly determined by the accuracy, quality and timeliness of the people who supply or upload the information to the Service, which could be your healthcare provider, a laboratory, you, or others who you or your healthcare providers give permission to. Patients Know Best cannot, therefore, give a warranty in relation to the Service or the information.
We provide the Service "as-is," "with all faults" and "as available" (see: http://www.pkbstatus.com ). We do not guarantee the availability of the Service or the accuracy or timeliness of information available from the Service. You may have consumer rights under law that this Service Agreement cannot change. To the fullest extent permitted by law, we exclude any implied warranties including those of merchantability, fitness for a particular purpose, standards and non-infringement.
We do not operate, control or supply any information, product, or service that is not clearly identified as supplied by Patients Know Best. The Service stores records created by Customer Institutions and the Service does not itself provide medical or any other health or care advice, diagnosis or treatment. Always seek the advice of qualified professionals at Customer Institutions if you require healthcare advice, diagnosis or treatment. Never disregard professional medical advice or delay in seeking it because of information you access on or through the Service.
The person responsible to you if you have a problem with the Service or your personal information used by the Service depends on what the problem is. In the first instance, you should approach your Customer Institution, who can investigate and either get the problem addressed for you or (if appropriate, where the health care provider believes the problem is our responsibility) raise the matter with Patients Know Best. For problems with Service availability you should always check your own internet connection is available, first.
The following paragraphs set out how far Patients Know Best is liable to you in any case where (a) you have a problem with the Service, (b) it is confirmed as resulting from Patients Know Best not meeting obligations that it owes directly to you (such as under data protection law), and (c) as a direct result you suffer loss or damage.
You can recover from Patients Know Best only direct damages if Patients Know Best is liable to you (as described above) and our liability to you cannot lawfully be excluded.
You cannot recover any other loss, damage or damages, including indirect, consequential, special, indirect, incidental or punitive loss, damage or damages, or lost profits. This means that, in each case, you cannot claim for such loss, damage or damages.
The above limitations and exclusions of PKB's liability will apply to the fullest extent permitted by the applicable laws. We limit our liability in this way in view of the fact that the Service is provided without charge to you.
Questions related to data protection and privacy can be addressed to Patients Know Best at:
David Stone
Patients Know Best
St John's Innovation Centre
Cowley Road Milton
Cambridge
CB4 0WS
Email: dpo@patientsknowbest.com
Patients Know Best's complaint procedure is documented here.
We may change the Service or delete features at any time and for any reason. We may cancel or suspend your Service at any time. Our cancellation or suspension may be without cause and/or without notice. Upon Service cancellation, your right to use the Service stops right away.
We may change this Service Agreement at our discretion by posting new applicable terms and conditions. If you do not agree to the changes then you must stop using the Service. If you do not stop using the Service, then your use of the Service will continue under the changed Service Agreement. PKB will notify users of changes to this Service Agreement, acceptance therein is assumed if refusal is not submitted within 30 days of notification. Service Agreement refusals should notify PKB Support https://support.patientsknowbest.com.
All parts of this Service Agreement apply to the maximum extent permitted by law. A court may hold that we cannot enforce part of this Service Agreement as written. If this happens, then we may exercise our right under condition 12 above and replace that part with terms that most closely match the intent of the part that we cannot enforce. This is the entire Service Agreement between you and us regarding your use of the Service. It supersedes any prior Service Agreement or statements regarding your use of the Service. If you have confidentiality obligations related to the Service, those obligations remain in force (for example, you may have been a beta tester). The headings used in the Service Agreement do not affect the interpretation of its terms and conditions.
We may transfer or assign this Service Agreement and/or the Services, in whole or in part, at any time with or without notice to you. For example if Patients Know Best were to be purchased by another company this agreement would transfer to them. You may not transfer to anyone else, either temporarily or permanently, any rights to use the service or any part of the Service. This Service Agreement is solely for your and our benefit (and the benefit of any person to whom we transfer or assign the Service Agreement and/or the Services). It is not for the benefit of any other person.
Your data and information stored and used in the Service is a shared electronic health record, which each of your participating Customer Institutions relies on. If you require a Customer Institution to change how they use your data or information, you must speak to the Customer Institution(s) who use the relevant data or information, and to Patients Know Best. Deletion or amendment of your data or information by one Customer Institution (or us) could result in other Customer Institution(s) (or us) losing data and information that they need for providing you with care (or the Services). For this reason, data will not be deleted, this is to ensure the integrity of medicolegal audit.
This Service Agreement is in electronic form. There may be information regarding the Patient Access Service that the law requires us to send you. We may send you this information in electronic form. We may provide required information to you:
Notices provided to you via e-mail will have a grace period of 14 days before being deemed given and received, this period will commence on the transmission date of the e-mail. As long as you can access and use the Service, you have the necessary software and hardware to receive these notices. If you do not consent to receive any notices electronically, you must stop using the Service.
The Service and all contents of the Service are © Copyright Patients Know Best and/or its suppliers and/or contractors. All rights reserved. Copyright and other intellectual property laws and treaties protect all software and content provided as part of the Service. We or our suppliers and/or contractors own the title, copyright, and other intellectual property rights in the Service including the software and the content. Patients Know Best, Manage your Health, Patients Know Best logo, and/or other Patients Know Best products and Services referenced herein may also be either trademarks or registered trademarks of Patients Know Best in the United Kingdom and/or other countries. The names of actual companies and products mentioned in this Service Agreement may be the trademarks of their respective owners. All rights not expressly granted in this Service Agreement are reserved.
Patients Know Best is a private company limited by shares, which is registered in the United Kingdom with company registration number 6517382. Its full name is Patients Know Best Limited, and its registered office is at St John's Innovation Centre, Cowley Road, Cambridge CB4 0WS.
By accepting the User Agreement and Privacy Notice I am allowing Patients Know Best to create a PKB Account as detailed in the User Agreement and Privacy Notice.
It is a legal offence to use someone else's personal details to gain access to their health records. If you have received an invitation in error, please delete it.