Patient Online Toolkit

Access to GP services and records through Patient Online has an important part to play in providing a modern, convenient and responsive primary care service to patients, their families and carers. It is convenient and effective for patients and the practice, and helps to foster a person-centred approach to care.

Patient Online is the generic term used in this toolkit for online access to practice systems using apps or web browser access provided by the GP system suppliers and other suppliers, all of which have their own proprietary names for their systems. They operate on computers, tablets and smartphones.

With Patient Online patients can book and cancel appointments, order repeat prescriptions; these are referred to as ‘transactional services’. They are used by almost 25% of patients in England.

Practices can offer patients online access to the detailed coded information in their records, a contractual requirement in England. They can also enable patients to view their consultation notes and clinical correspondence. Patients can use record access to prepare for consultations, collaborate fully in person-centred models of care and improve their self-management of their long-term conditions. 

In certain circumstances family members and carers may find it helpful to have access to the patient’s Patient Online account (e.g. in end of life care or if the patient has dementia). 

The RCGP, in partnership with NHS England, has developed the guidance and resources in this toolkit to help general practice teams offer Patient Online and guide patients in the use of these digital tools to self-care.

A note on this iteration of the toolkit
The Patient Online Toolkit is intended to support and inform general practice teams who are offering online services for their patients, including transactional services and record access. It updates the previous guidance provided by the RCGP, in collaboration with NHS England. It does not cover online consultations.

Whilst guidance on getting started with Patient Online is still relevant, especially for new practice team members, the conversation has now moved on to the clinical benefits of Patient Online, particularly for patients with long-term conditions. The toolkit now includes more information on the role of record access in providing a person-centred approach to care.

Supporting information

• Glossary of Patient Online terms
• Patient Online: The Road Map

This section explains what practices should do to establish or improve new online appointment, repeat prescription or record access services safely and effectively.

Most practices now offer some form of Patient Online services. English practices are required by their contract to offer transactional services and access to the detailed coded record. Practice team members who are new to Patient Online may also find it a useful introduction.This section contains guidance on how to provide the essential services of Patient Online and resources that you might find helpful.

Transactional services

Transactional services are the Patient Online facilities patients use to book and cancel appointments, order repeat prescriptions and send messages to the practice about their medication. They are popular because they are efficient and convenient for patients and practices. In 2018 almost 25% of people in England had signed up for them. 

Since 1st April 2015 it has been a contractual requirement that English GP practices offer these services. Practices must also routinely ensure that the number of appointments available to be booked online meets the reasonable needs of their registered patients. 

Practices have found online booking quick and easy to set up. Registration for online booking of appointments is a relatively simple process. Patients appreciate the convenience of this service and it has several benefits for practices, which are detailed in the Online Appointment and Prescriptions guidance.

• Online Appointments and Prescriptions
• New applicant process 
• Application form template
• Proxy access consent form
• Getting Started Checklist
• Information Governance

Record Access

Patient Online is an efficient and effective method of providing access for patients to their current GP clinical record, which empowers patients to management their health. It is particularly useful for patients and/or carers who manage multiple long-term conditions because it enables them to take a more active role when, for example, preparing for consultations, reviewing care plans and making informed decisions about what matters to them as part of a person-centred approach to care endorsed by the RCGP.

Practices in England have a contractual requirement to offer access to the full detailed coded record (DCR). It is also possible to offer access to the full medical record.

• Getting started with record access - This guidance describes how to register new patients for record access safely, the importance of record data quality, reasons for re-considering record data quality and how to help patients make good use of their record access. It also talks about the risks for patients if they are not able to keep their record access private and secure and reasons for refusing to grant record access temporarily or permanently.

Subject Access Requests

The Information Commissioner’s Office (ICO) has agreed that practices may be able to comply with a subject access request from a patient under data protection legislation by offering to provide a patient with online access to their health records, where available. This applies to requests on behalf of the patient from legal representatives and insurers. However, if the record is not fully computerised paper copies may need to be provided on any data, including letters and reports, not available online. For more information on their approach see the ICO blog Why the right of access to patient data needn’t be a headache for GPs.

Supporting information

• Identity Verification and Authentication Standard for Digital Health and Care Services, NHS Digital
• Patient Online: The Road Map
• GMS contractual requirement
• GP online services, NHS England
• Patient Online Management Information (POMI), NHS Digital
• Information leaflets for patients, nhs.uk
• Accessible Information Standard, NHS England 
• Confidentiality: best practice in handling patient information, GMC
  
• Keeping your online health and social care records safe and secure, British Computer Society/NHS
• Guidance on Gillick competence and Fraser guidelines, NSPCC
• Digital inclusion, Good Things Foundation

   

The guidance in this section is for practice clinicians, managers and staff who make decisions about new applications and those who talk directly to patients about applying for online services.
It describes in detail how to sign up new applicants for Patient Online, including the procedures for verifying the identity of the person requesting a Patient Online account, clinically assuring the patient record for record access and the discussion with the patient before Patient Online is switched on. It also covers applications from people acting on behalf of the patients, such as parents, family members and carers.

Patients may book an initial appointment online as soon as they have completed a simple online registration process. Full access to appointment, repeat prescription ordering or record access services require a secure identity verification process.

The risks to the patient’s privacy and the complexity of GP records means that assessing an application for record access requires assuring that the record is ready for sharing, that it contains no data that may be harmful to the patient or might be confidential information relating to a third party, or if there is, that the data has been redacted (or hidden from view through Patient Online).

The standard application process - step-by-step

Useful resources and guidance when registering new applicants

• Application form template
• Information for Patients About Patient Online
• Identity Verification
• Coercion
• Supporting materials, NHS England 
• Patient resources, nhs.uk 
• Online Centres Network - Patients who may struggle to use the internet or smartphone apps for Patient Online may benefit from the Online Centres Network. They can phone a national support line at the Good Things Foundation (every weekday from 9:00am-5:30pm on 0114 349 1666).
• Online access to medical records: finding ways to minimise harms, BJGP

Application for proxy access

Patients may find it helpful if someone else, usually a family member, close friend or carer, has access to their Patient Online account to book appointments or order repeat prescriptions on their behalf. This is proxy access. In certain circumstances, particularly when patients lack capacity or have complex multimorbidity, it can be very helpful for a proxy to have access to their record to keep up-to-date and collaborate in their healthcare.

Where the GP system has the functionality, the proxy should have their own login credentials. This means that the proxy can be given different levels of access to the patient and their access can be switched off and the patient’s request or if the practice judges it to be in the patient’s best interest. Normally the patient must complete a form that gives consent to the proxy access.

• Proxy Access
• Children and Young People
• Proxy Access consent form

Supporting information    

• Patient Online for Dementia
• Safeguarding Related to Online Services: Proxy Access and Coercion, NHS England
• Information for practices, NHS England
• Online Access Promotional Toolkit, NHS England
• Supporting materials, NHS England
• GP Online services – easy read guides, NHS England

System supplier promotional materials

• EMIS
• TPP
• Vision Health
• Evergreen

GPs in England are required by their contract with the NHS to offer and promote online access to the detailed coded records to their patients. Each supplier has interpreted the requirement slightly differently. NHS England summaries the requirements in the image below.

• NHS England Patient Online: What GP practices need to do 

Practices may also provide online access to the full medical record. This may be helpful for patients who have complex health needs and want to keep up-to-date with care plans and hospital reports. It may also replace the need to provide paper-based subject access request reports (SAR) commonly requested by patients for legal purposes.

In describing to how manage and make use of full record access, the guidance looks forward to the implementation of the National Information Board goal that patients will have full record access by 2018.

Clinical use of record access

Patients can use record access as part of routine clinical care to self-manage complex health conditions, meet their personal health goals and achieve better health outcomes. Examples include:

• using access to coded laboratory results to monitor long-term conditions and prepare for consultations
• using the coded data recorded by the practice to check on immunisations, adverse drug reactions, allergies, screening and preventive procedures and preferences and advance decisions recorded in care plans
• reading clinical correspondence from hospital admissions, outpatient appointments and investigations to gain a better understanding of their health and care
• using portable access to the record on tablet computers or smartphones to share data with other health professionals in all health settings.

In concertinas 6-9 of the toolkit there are clinical exemplars to illustrate the clinical benefits of using Patient Online to support a collaborative, person-centred way for patients to manage their long-term conditions. The Journal of Medical Internet Research recently published a paper on the impact of online services for patients in Sweden. Reasons for access related to patient empowerment, involvement and security.

Providing online record access - the challenges

Providing record access is not straightforward. It does present a number of challenges for practices. Here is a short reminder of the steps to take to meet them:

• How to meet the challenge of providing online record access

There is more detailed guidance about managing new applications for record access here:

• Getting started with online record access
• Coercion
• Proxy Access
• Children and Young People
• Applications for Record Access
• Data Quality
• Information Governance
• Safe Patient Online Record Access

Data Quality

The quality of data in a patient’s record can be assessed by the extent to which it meets the various purposes that the record is used for. For online services this means that it must be clear and unambiguous for the patient to understand, without displaying information that might be harmful to the patient or others or confidential information to third parties. Poor data quality may confuse or mislead both patients and clinicians and have a negative impact on the patient’s health care and safety.

It is not normally easy to know which patients have record access and it is impossible to know who will have it in the future so it makes sense to develop a practice plan to maintain data quality that is fit for sharing.

Sensitive Data

GP records sometimes contain information that is confidential information about a third party which the patient must not see. There may also be information that may harm the patient, a diagnosis, abnormal result or opinion that the patient is not aware of. It may also contain information that the patient believes is mistaken or wants to have removed from the record. For brevity we refer to all such information as 'sensitive data'.

Patients or their proxies may ask for entries to be altered or removed if they disagree with them or find them upsetting or offensive. However, all health professionals have a right (and a duty) to make complete records of facts and their professional opinions about their patients’ health, indicating clearly which are facts and which are opinions.

All GP systems have a method of preventing data being visible to patients with online record access. This is generally known as data redaction. Before record access is switched on all the data (detailed coded or full record access) that the patient will see should be checked for sensitive data that needs to be redacted. It is helpful to establish a practice record keeping policy about recording and redacting new entries of potentially harmful and confidential third party data even if they do not currently have online record access. 

Supporting information - test results

• Explaining laboratory test results to patients: what the clinician needs to know, BMJ 

Supporting information - children and young people

• Parental rights and responsibilities, GOV.UK
• Protecting children and young people: The responsibilities of all doctors, GMC 
• Children and young people ethics tool kit, BMA 
• Safeguarding Children Toolkit for General Practice, RCGP
• Confidentiality and children, Medical Defence Union 
• Gillick or Fraser? A plea for consistency over competence in children, BMJ

Supporting information - coercion

• The RCGP has several resources on its website on domestic violence that are relevant to the topic of coercion. 
• NICE has succinct advice on recognising and responding to evidence of domestic violence or abuse and in their guidance on Domestic violence and abuse: multi-agency working.
• Safelives provides many useful resources on coercion and domestic abuse, including resources for GPs and guidance on identifying domestic abuse.

Supporting information - evidence of the benefits of record access to patients

• Patients’ experiences of accessing their electronic health records: national patient survey in Sweden 
  
• OpenNotes after 7 years: patient experiences with ongoing access to their clinicians’ outpatient visit notes 
  
• Patients managing medications and reading their visit notes: a survey of OpenNotes participants 
  
• When doctors share visit notes with patients: a study of patient and doctor perceptions of documentation errors, safety opportunities and the patient-doctor relationship 
• The value of a Patient Access Portal in primary care: a cross-sectional survey of 62,486 registered users in the UK
  

Improving the care of patients with multimorbidity remains one of the most important challenges facing general practice. It requires a consistent emphasis on collaborative care planning, solution-focused coaching, goal setting and action planning by health professionals taking into consideration the patient’s personal goals and priorities. Enabling patients to work in partnership with health professionals to develop confidence, knowledge and skills to better self-manage can improve clinical outcomes and patient well-being. Patients need accessible and trusted information delivered through reliable sources and effective communication with their health professionals. Online access to their health record is an essential part of this.

Experience has shown that most patients who sign up for online record access only use it to take a look at their record, and check that it is accurate. This is a missed opportunity for patients with long-term conditions or in end of life care. Online record access can be used to empower these patients to be proactive in engaging in their healthcare, to develop a better understanding of their condition, and determine their own health priorities. They may need help and support to do this initially, but it can enable them to prepare for consultations, to discuss what matters to them with their healthcare professional and play a full part in shared decision-making and self-care.

Patient Online can also bring benefits for the practice. It can save time when patients use it to book appointments, order repeat prescription and check recent test results and hospital reports. “Did not attend” rates are lower with appointments booked online. Communication is more accurate and patients can use record access to prepare for consultations, saving time in the consultation and improving their ability to make decisions about their care. Patients can help to improve the accuracy of their record.

Clinical exemplars
This toolkit includes a number of clinical exemplars where the role of Patient Online in helping people manage long-term conditions is discussed in more detail. Each clinical exemplar includes a guidance document, a webinar and slide set, a podcast and relevant supporting information. The aim of each exemplar is to demonstrate the different ways in which Patient Online and record access support patients and carers to manage multiple long-term conditions and how to overcome some of the perceived barriers of using Patient Online in a clinical context.

Person-centred care & multimorbidity
The RCGP endorses a person-centred approach to health and care and has produced a number of resources to define what the various approaches look like and to support GP teams to implement them. 

Supporting information

• Explaining test results
  
• Patient Information for Online Access
• Person-Centred Care Toolkit 
  
• Person-Centred Care homepage 
  
• Collaborative Care and Supporting Planning Toolkit 
  
• Top tips for Person-Centred Care 
  
• Inquiry into Patient Centred Care in the 21st Century 
  
• Developing patient centred care, NHS England 
  
• House of Care, NHS England 

The resources in this section are for GPs and practice nurses who help patients make decisions about their diabetes, especially practice nurses working in diabetes clinics, but the principles can be applied to many long-term conditions. It covers the use of Patient Online record access to enable patients to:

• use laboratory results and other coded data that is relevant to their diabetes to monitor the impact of their self-care and adherence to treatment
• use the information to help decide what matters most to them and prepare for consultations
• review and contribute to their diabetes care plan.

The guidance and resources are meant for GPs and practice nurses caring for patients with all types of diabetes mellitus to help you offer your patients online access to their record safely and confidently. They describe how access to GP online services contributes to providing person-centred care to patients with diabetes. It presents the case for recommending online record access to patients with diabetes and gives advice about how the practice can help patients use it to prepare for consultations and improve their ability to self-manage their condition.

RCGP resources

• Patient Online: Person-centred care and diabetes mellitus
• Patient Online and Diabetes Care: webinar slides
• Quality Improvement Toolkit for Diabetes Care

 

This guidance is for GPs and practice nurses caring for patients approaching the end of life irrespective of underlying condition or co-morbidities. The aim is to describe how access to GP online services contributes to person-centred care in this context and to present the case for recommending online record access to patients and their families and carers at the end of life.

It describes how you can help them make use of online access to information about their healthcare to improve their ability to self-manage their condition and help to co-ordinate their care. It describes how carers or relatives can use Patient Online on behalf of patients without capacity. It explains how patients can share access with supporting family members, carers and the multidisciplinary healthcare team to help them look after the patient safely and confidently.

The GP coded record is shared to support direct care in many parts of the country through electronic palliative care co-ordination systems (EPaCCS) or through direct views of the GP record. Patients do not have access to these systems but Patient Online enables them to see whether the data about them in these records is complete and up-to-date.

RCGP resources

• Using Patient Online in End of Life Care
• Patient Online in End of Life Care: webinar slides
• Palliative and End of Life Care toolkit 
• Collaborative Care and Support Planning toolkit 
• EPaCCS: electronic systems that help improve patient care, RCGP & Marie

Supporting information

• Background to Gold Standards Framework, National Gold Standards Framework Centre
  
• End of life care for adults quality standard, NICE 
  
• SCCI1580: Palliative Care Co-ordination: Core Content, NHS Digital 
  
• The Role of Care Homes in End of Life Care, The National End of Life Care Intelligence Network
  
• New UK General Practice Core Standards for Advanced Serious Illness and End of Life Care, BJGP 
  
• Crash course in EPaCCS (Electronic Palliative Care Coordination Systems), BMJ 
  
• The impact of advance care planning on end of life care in elderly patients: randomised controlled trial, BMJ

Dementia is typified by increasing memory loss and intellectual impairment that creates difficulties for patients, their families and carers, and health professionals alike. Forward planning with early referral to local memory services, involvement of family members and carers and a shared understanding of the patient’s priorities and preferences are at the core of good healthcare.

As patients lose the mental capacity to understand the decisions that are necessary for their health and social care, family and carers have to make decisions on their behalf. As capacity declines Patient Online becomes increasingly helpful.

Over 90% of patients with dementia have at least one co-morbidity with a median number of three co-morbidities for each patient. Primary care consultation rates, hospitalisation, prescribing rates and mortality increase with increasing co-morbidity. The complexity is difficult for patients and their families and carers to understand and manage. Access to Patient Online appointments, prescriptions and up-to-date information from the GP record can be invaluable to patients and carers.

This guidance describes how Patient Online can help patients with dementia understand and manage their healthcare in the face of complex multimorbidity and failing mental capacity. It also describes how Patient Online can be used to support family members and carers helping the patient as the patient loses mental capacity and how practices can provide access to their Patient Online services safely and effectively. The guidance is intended for GPs, practice nurses and other healthcare professionals involved in the care of patients living with dementia in the community.

RCGP resources

• Patient Online for dementia
• Patient Online and dementia: webinar slides
• Safeguarding Adults at Risk of Harm Toolkit 
• GP online services - Information for the carer of a person with dementia, Dementia UK & RCGP

Supporting information

• Dementia UK
• What is Dementia, Alzheimer’s Disease Society 
• Dementia: assessment, management and support for people living with dementia and their carers, NICE 
• Dementia Roadmap, Dementia Pathfinders CIC 
• Dementia: Good Care Planning, NHS England 
• My Future Wishes, NHS England 
• The Dementia Guide, living well after diagnosis, The Alzheimer's Society 
• Recoded Dementia Diagnoses - June 2018, NHS Digital 
• Mental Capacity Act 2005; Deprivation of Liberty Safeguards, HM Government 
• Office of the Public Guardian, HM Government 
• Join Dementia Research, NIHR
• Association of comorbidity and health service usage among patients with dementia in the UK; a population-based study, BMJOpen 

This guidance is for GPs and practice nurses caring for patients with inflammatory arthritis. The aim is to describe how access to GP online services contributes to person-centered care in this context and to present the case for recommending online record access to patients with inflammatory arthritis.

It describes how you can help them make use of online access to access information about their healthcare to improve their ability to understand and self-manage their condition and help to co-ordinate their care. It also describes how patients can make use of online access to test results and other health information to prepare for consultations and empower them to be more engaged in their own care.

This guidance does not seek to cover aspects of shared care, but its aim is to help the patient become more engaged and informed by utilising Patient Online. Therefore, for clinical management, please refer to your local shared care agreement and NICE guidelines.

RCGP resources

• Using Patient Online in Inflammatory Arthritis
• Patient Online and Rheumatoid Arthritis care: webinar slides

Supporting information

• Collaborative Care and Support Planning toolkit
• RCGP Person-Centred Care toolkit
• Rheumatoid arthritis in adults, NICE
• Guideline for the prescription and monitoring of non-biologic disease-modifying anti-rheumatic drugs
• The prevalence of rheumatoid arthritis in the United Kingdom: new estimates for a new century

This guidance is for GPs and practice nurses. Its purpose is to describe how access to GP online services contributes to person-centred care for patients with mental health conditions, and to present the case for recommending online record access to these patients.

It describes how you can help patients use Patient Online to access information about their healthcare to improve their ability to understand and self-manage their condition; in particular, how patients can use access to test results and other health information to prepare for consultations, enabling them to be more engaged in their care. It also describes the specific risks that online record access may hold for patients with mental health conditions and the practice, and offers advice about how they can be addressed.

RCGP resources

• Patient Online and Mental Health Conditions
• Patient Online and Mental Health webinar slides

Supporting information

• Royal College of Psychiatrists
• Mental Health Foundation 
• Mind 
• Rethink Mental Illness 
• Rethink Mental Illness - record access 
• Good Things Foundation 
• Long-term conditions and mental health: The cost of co-morbidities 

We would like to thank the many people who have given their time to contribute to the material on this toolkit. 

In particular, thanks to Dr Nutan Patel, Dr Imran Khan and Joyce Pickering for their work this year on the clinical exemplars. Thanks to Dr Geoff Schrecker and Dr John Lockley for their work on the previous iteration of the toolkit. Thanks to Dr Ralph Sullivan for leading the work. And lastly, thanks to the support of our colleagues at NHS England.