Glossary

The following definitions are borrowed from Telecareaware
When we use these terms we usually mean:

• Telecare: from simple personal alarms (AKA pendant/panic/medical/social alarms, PERS, and so on) through to smart homes that focus on alerts for risk including, for example: falls; smoke; changes in daily activity patterns and ‘wandering’. Telecare may also be used to confirm that someone is safe and to prompt them to take medication. The alert generates an appropriate response to the situation allowing someone to live more independently and confidently in their own home for longer.

• Telehealth: as in remote vital signs monitoring. Vital signs of patients with long term conditions are measured daily by devices at home and the data sent to a monitoring centre for response by a nurse or doctor if they fall outside predetermined norms. Telehealth has been shown to replace routine trips for check-ups; to speed interventions when health deteriorates, and to reduce stress by educating patients about their condition.


 

Dallas dictionary

At the start of dallas, the dallas dictionary was drafted, in order to bring some common understanding of terms. This is reproduced here for reference:

Platform

In order to roll out services as widely as possible and achieve the dallas goal of Scale, services  should not be limited to platforms chosen by suppliers or commissioners, but should include the devices that consumers are already using in their daily life, or might choose to purchase and/or use for reasons outside their health & wellbeing.

On each of the technical platforms, the services should appear as a “native” application, with the content displayed and interacted-with in ways that are usual for that platform, and thus expected by the users.


Statutory Sector

“statutory sector” in dallas refers to the providers of services that are mandated or paid for by the state through taxation etc. Typically this means the NHS and its various component parts, Social Services, and possibly even state-funded residential homes etc.

It is used as a term to distinguish these services from what might otherwise be available through commercial channels, paid for more directly by consumers or through insurance or subscription models. The statutory sector may be more tightly governed, for example in information governance, than the commercial sector.


Consumer/Patient/Citizen/User

The use of words to describe the end-beneficiary of services varies somewhat, even in dallas, and there is as yet no clear agreement about the best term(s) to use, as each may be seen to have unwanted connotations. The following terms have generally accepted meanings:

Consumer

Any user of goods or services, but particularly users who pay directly for those services, much as they would for non-health related or non assisted-living services.

Patient

This term may be seen by some as implying illness or treatment, but in fact many GPs refer to anyone on their lists as “patients” even when they are not ill. It is particularly used in the statutory sector.

Citizen

This term refers to private individuals who may consumer services, particularly when they are paid for by the individual. The use of the term citizen may be loaded with assumptions of certain rights (for example to privacy, quality of service, etc), because of its association with political usage.

User

This term is borrowed from the IT sector, and simply refers to the person using the goods or services as intended. It does not mean or imply the derogatory abbreviation for “drug user”, although as many of the dallas community members may work in the provision of services for those with drug dependency, they may wish to avoid using this term.


Health Professionals

A blanket term intended to cover anyone working in the statutory or private sector who is in some way medically-qualified, be it as a GP, hospital consultant, nurse, or other person who can take informed and qualified decisions.


Carers, informal and formal

Carers are those who support a person’s daily life by providing support for activities they cannot provide for themselves. Typically the recipients of care may be people suffering from a short or long-term disability, recovering from an illness or operation, or living with a long-term condition.

Informal carers

Informal carers are friends, family, or other volunteers who provide care services because of their relationship with the recipient or because of other altruistic motives. Typically they may not have formal training or qualifications in care, and receive no payment other than in some cases some expenses, for their services.

Formal Carers

Formal carers may be provided as part of statutory service provision. They will typically be paid for their services, be accountable to authority for the quality of care they deliver, and have appropriate training.  They may work alongside informal carers, depending on circumstances, perhaps by providing more expert guidance for informal carers to follow.


Information Governance

This refers to the legal constraints on the handling of information of a sensitive nature, typically health records of individuals.


Platform

Platform is a much-used term and can depend on context.

In general it is considered to be a necessary enabling part of a service or system but which does not in itself provide the complete service or functionality it enables. Typically it refers to a technical device that can be used to provide a service or range of services that may defined later. For example a PC or smartphone that subsequently relies on software to deliver the service would be described as platform. A service may be described as relying on a particular underlying platform such as an iPhone, a tablet, or a particular set-top box. Or a service may be described as platform-agnostic, meaning that it can operate on a wide range of different platforms.

A platform may also be something less tangible such as a cloud service that would allow software to be delivered according to need.

Finally, the word platform may also be used to describe a framework or context of operation for a range of services or projects.


Network

Network in its technical sense, refers to the means of connection of computers or pther consumer devices that allow communication of voice, video, or data. As many networks are now reliant on wireless technology, they can be of variable quality, depending on the conditions.

The quality of available network connection will vary with location and also possibly with time (especially in the case of mobile or wireless connectivity). Services should be designed with this in mind, and should be as resilient as possible to low bandwidth, high error rates and intermittent connectivity.

Clearly the network requirements will vary from service to service, with some (e.g. video calls) requiring much higher bandwidth, better quality connections than others. Each (part of the) service should be designed to be as resilient as possible to network problems. For example, it might be sensible to download a set of data to a local cache within the device, and to allow delayed updating of the master data if connectivity with the server is lost.

 


Personal Health Record

The Personal Health Record (PHR) is a collection of information about an individual that is managed and owned by the individual to which it refers. Typically it may be set up by the individual or informal carers.

The particular value of a PHR is in the opportunity for greater self-care. By owning and maintaining his/her own health records, an individual can be more motivated to seek help and  make lifestyle changes.  the opportunity for healthcare professionals is greater access to information about a patient, which may be more frequent than data taken during formal consultations. The question healthcare professionals will ask is how reliable is that data, can they make diagnosis and decisions based on it? At the very least the greater interaction with the data from the patient can be turned to the advantage of the professional supporting the patient.

Challenges

The concept of a PHR presents a cultural shift, particularly in the UK where healthcare is more or less fully delegated by individuals to the statutory sector. There is a question over what percentage of the population would wish to create a fully-featured PHR, with concerns both over the need for and security of such a record. To maximise take-up of services, therefore, it should be possible to access as many services as possible without the need to create and/or populate a PHR.

Explanation

Examples of services that should not need the creation of a PHR include the use of health information and education services, the booking of GP’s appointments and the viewing of statutory records.


Life-enhancing Plan

This term was coined in the Liverpool Community but had some currrency dallas-wide. It refers to a plan for the wellbeing of an individual that can be used by the individual and/or their informal and formal carers to make decisions that support the person’s continued or improved wellbeing. It need not be limited to the treatment of medical conditions, but may also include support for the improvement of lifestyle facilitating prevention of future conditions.

The dallas service “A Better Plan” started by the Year Zero community, was the primary example within dallas.


Proprietary

Any system that relies on the technology provided by a single supplier may be described as proprietary, especially if that technology is not available for use by competitors. The opposite of proprietary in this context is “open”. Proprietary systems are seen as negative in that thye can lock commissioners in for many years to buying from a single supplier, as the components and functions rely completely on compatibility with other parts of the proprietary system, with no option for buying from other sources.


Telehealth

(see also the Telecareaware definition, above)

Telehealth refers to the gathering of medical measurements in the patient’s own domestic environment, by electronic means, for use by remote health workers or automatic systems in the management of the patient’s health condition. It differs from telecare in that it specifically relates to medical measurements on the body; it differs from telemedicine in that it is of a routine nature and typically the results are stored for later use and trending and analysis purposes rather than in a live doctor-patient consultation.


Telecare

(see also the Telecareaware definition, above)

Telecare refers to the use of electronic devices for the management of or administering of care to an individual without having to be physically present. The primary example is that of an alarm system that a patient wears on a pendant, which allows the patient to call for help.  Other examples include the use of hands-free phones to talk to emergency services, monitors to detect physical activity, systems to manage utilities around the home, and systems that provide reminders and information management for the administering of care.

Telemedicine

Telemedicine refers to the practice of medicine when there is some physical distance between practitioner and patient, using technology as an enabler.  Often this involves some form of live video or voice link, or it may simply involve telemetry in which vital signs are monitored live by a doctor at some distance from the patient. Typical scenarios in which telemedicine is used include emergency use, cases where patients or doctors are unable to travel to hold consultations, and extensions to telehealth where routine consultations are more convenient or cost-effective to carry out at a distance. Challenges include the simultaneous transmission of live data alongside video and voice communications, live access to patient records during consultations, privacy, security, and patient consent.