These are some of the terms that we have used and what we mean by them.
Records
Health records include all the information about someone’s health. Traditionally they could be a folder, and it’s easy to think of health records as being sets of files - perhaps paper in a folder or in a filing cabinet, or perhaps digital files on a computer. This makes them seem very static and unchanging. Of course, they are actually changing all the time - getting updated with new data, new assessments and diagnoses. They include text information (such as notes from a consultation), data (such as blood pressure readings) and more complex files such as the video recording of a scan.
For an entertaining and informative presentation about health records, and how they are used to support the work of healthcare, we recommend Larry Weed’s 1971 lecture - still useful and relevant today!Electronic Health Record (EHR)
A popular abbreviation, simply meaning computerised, digital record. This might include all the information of a complete health record, or simply one part of it, such as that relating to a patient’s treatment at one hospital trust.
Notes
Notes are what a clinician writes down about the patient during a consultation.
PHR
A PHR is usually a Personal Health Record, a health record managed and maintained by the patient themselves. However a PHR can sometimes be a patient-held record, which may be a medical record that the patient holds, literally, and carries around different care settings, such as the maternity record.
A PHR can be a physical artefact, such as the Personal Child Health Record or ‘red book’ held by the parent on behalf of a child, or it could be information updated on the patient’s mobile phone.
Personal health records provide a way for the patient to manage their own health information and can allow patients to share the record or aspects of it with professionals. Patients need to consent for their data to be shared across health services and one way of getting that consent would be to roll out personal health records, where the patient makes their own choices about who can access their information.
For patient held records, it is often not clear whether the record physically held by the patient is the only one (or whether there is a copy online in the cloud). It is also often unclear how access to the record is controlled, especially in the case where a patient may be unconscious or unwell and unable to unlock their phone, for example, let alone provide a password or other specific PHR login details.
Prototype
Doteveryone uses prototyping to explore new ideas, and to help people understand and discuss them. A prototype is a tool or service or system, then, and might include software, electronics hardware, or may just be made of paper!
Such prototypes are not steps on a journey to a robust and complete product or service; they are not ‘alphas’ or ‘betas’ which are beinggetting refined, improved for quality and so on.
Our prototypes are used as a tool to understand situations and to help us, and others (in this case, patients, clinicians and carers) to explore how technologies might be used in a situation in new ways. We use them with user research and ethnographic techniques, and as talking points; we are not testing usability or accessibility or quality.
Data and information
Data and information sometimes seem to get used interchangeably in the health sector. In general, data is basic facts, such as “raw” readings from a sensor or symbols; information has more context and meaning - for instance, readings laid out in a table with headings to tell you what they are.
Data and information are digital content stored as files or in databases. They might be text, or numbers, or images. The key thing is that the data or information itself can be presented in many different ways. For instance, a set of temperature readings are numbers which could be presented as a table, or as a graph, or perhaps as an animation. They could be combined with other information, and presented together.
Information can also be presented in multiple ways; think of a patient’s home address. This might be both stored and presented as text (“23 North Road, Small Town, ST34 9QQ”), but could also be presented on a map, which might be more useful for a nurse visiting them. For some uses, only some of the information might be needed - for instance, the name of the town alone. This is useful for avoiding information overload.