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Patient Online guidance documents

Access for children 

• Proxy access on behalf of children and young people
• Guidance for practice teams

The risk of coercion of patients to unwillingly allow someone else to have access to their records; please can you insert the linkCoercion

Access by the patient to third-party data about other people in the patient’s record. Hospital letters and reports may be written by people who are unaware that patients may have online access to their letters, although all letters should be written for patients to read. Some letters may refer to more than one patient, particularly letters about siblings or families. Please will you insert the link

Proxy access for someone acting on behalf of the patient such as parents wanting access to their child’s record. Practices will need to deal with requests for proxy access from parents or from relatives looking after individuals who don’t have mental capacity

This is a complex and potentially time-consuming process, particularly when access to the full record is being considered; the RCGP toolkit offers guidance for practices faced by these requests. . It will be important for patients and their proxies to understand what proxy access means, and that clear consent is expressed by the patients whenever possible (and recorded by the practice). Those seeking proxy access also need to understand their responsibilities in safeguarding sensitive information. Please will you insert the link.

Patients will also need to be informed about the risks to their privacy and how to safeguard their sensitive medical information. The recording of sensitive information such as sexual history and contraception could cause major issues for the patient, especially where someone else has proxy access or if coercion becomes an issue in the setting of domestic abuse. Please will you insert the link

Retrospective access and the consequences of offering this – specifically third party information and scanned letters. Retrospective access may be particularly for useful for patients with complex histories and long term conditions who may benefit from having access in managing their condition. Information governance issues and considerations do need to be carefully weighed up by the practices that are considering offering it. Retrospective access requires practices to screen the historical record for third-party data that the patient should not have access to without the consent to disclose the data from the person providing the third-party information. If consent is not available or possible, it may be necessary to redact the information. Retrospective access to free text data may expose language previously used in the record that is not patient-appropriate, such as euphemisms or contentious information. There may be data, received from a previous practice via GP2GP, of a poor quality over which the current practice has no control. There is a risk here that the doctor-patient relationship could be jeopardised.

Safeguarding vulnerable adults and children .Please will you insert the relevant link

ID Verification. . There needs to be clear, well planned identity verification and consent processes, including the management of proxy access. Provide patient information leaflets about online access when patients register, and about items in their record when they are viewing their data. When they register for online access, patients should be told that the practice may withdraw their access to online services in specific circumstances. These are likely to include:

The discovery of coercion of the patient

The discovery of third-party data in the record after access has been granted. Please will you insert the link

Test results. Patients will have access to laboratory results once they have been filed in their records. It can be hard for patients to understand the meaning of results for their health. They can use a number of good online resources (including https://www.labtestsonline.org.uk/understanding) to learn more about them but patients may misunderstand the significance of laboratory data. Patients will commonly come across data flagged as abnormal by the laboratory because the biological value is outside the laboratory ‘normal’ range, but is of no significance to the individual patient. A clear explanation for patients of how the practice manages test results and communicates with patients about abnormal results will help. The use of messages provided by clinical staff next to test results and timely communication with patients about abnormal results will also help to reduce anxiety about individual tests. The presentation of the data in graphical form may also help patients to use data in a more meaningful way for them

Your system’s functionality.

One of the key considerations for practices when deciding what to offer through online services, will be the functionality that their system supplier offers. System suppliers are contracted through the General Practice Systems of Choice framework contract (GPSoC) to provide online access for patients, but currently there are significant differences in what each supplier offers, with some offering more than the current GMS contract requires.

Administrative error. Patients need to understand what they need to do if when a simple administrative error has put information that refers to another individual on to the patient’s record. An example might be a scanned document attached to the wrong patient’s record. Patients should also be warned that they may come across information from secondary care, in a scanned letter perhaps, which was not intended for them to read without a verbal explanation from their doctor. Although there are many good resources for patients to learn about the technical content of their records (e.g. NHS Choices and patient.co.uk) the practice may have to invest in time to explain the meaning of data that patients see online.

Additional resources:

Patient Online: The Road Map

Patient Online Practice Toolkit