These ethical guidelines are created as a result of the research study called “Evaluating the beneficial effects of mobile safety alarms for people with dementia, their family and society” made during 2011-2012 by the college of Borås in Sweden. The guidelines has since then been updated by Lars Sandman, professor in care ethics, during May 2015 based on suggestions from representatives from municipalities and suppliers.
Function title
First the term. In conjunction with the study, the term used was mobile safety alarms for a GPS- and GSM based safety function that can be carried anywhere there is a phone signal. It is a small custom built that gives the opportunity to transfer a safe position of where you are when the alarm is used and it also gives family or friends the opportunity to track where the person carrying the unit is based. Since the the term has been confused with the type of stationary safety alarm with a GSM connection. For this reason the suggestion was made to change to GPS alram or Localisation technology, which is the term used in Norway. In this documentthe term being used is GPS alarm.
Background and the study
The university of Borås completed a research study during 2011 and 2012, that was later interantionally published in the Journal of Assistive Technology. The study was performed with financial support from the Alzheimers fund and from the Swedish governmental institute of Technical aid for the elderly. The purpose of the study was to evaluate the beneficial effects of the use of GPS alarms for people with dementia, their family or friends and for society. The study was mainly focused on people in ordinary living situations and the ethical aspects of using the alarm. The ethical standing point is a balance between independence, safety and integrity. These guidelines were created as initial guidance and were later updated as a result of the study. Both during the study and in conjunction with the update in 2015, the guidelines have been verified by a number of staff working in participating municipalities.
Even if during May and June 2015 there were no clear national stance regarding the usage of GPS alarms there was a lot of work taking place in different places regarding the matter.
Here we have taken into consideration the statements made from the Swedish Social Board as well as the work done locally and regionally in the counties involved. To give an example, the city of Västerås has created a “Västerås model” which gives interesting perspectives for how the usage of welfare technology can be motivated and handled.
We would like to encourage a dialogue regarding these matters. Everyone is welcome to leave feedback regarding the guidelines or share them as they are generic and can be used in conjunction with any GPS alarm, regardless if the user is in an ordinary living situation or in residential care.
Ethical guidelines
An important starting point when using a GPS alarm is the user being able to move and live freely as well as family or friends feeling that user is safe. The alarm does pose as a certain amount of violation of privacy and integrity but it needs to be measured against the improvement of the users independence and safety.
In most cases, it is more violating for a person’s integrity when care personal or family or friends limits the freedom to move than for the same people to be able to, when needed, see the location of the user by using the GPS system.
A GPS alarm does not need to be seen as a measure of limitation, but as a creator of freedom and it provides the opportunity for the user to be part of- and interact with society.
The introducing of the GPS alarm can be seen as a reaction to the so called “locking in effect” that some of the permanently fixed GPS alarms can lead to.
To not have the freedom to step outside and go where you like can feel violating and create irritation and uneasiness. To always be in need of company when outdoors is also a violation of the personal freedom.
The aim of the study was to show that the use of the GPS alarm leads to an increased sense of safety as well as a number of other positive effects when used to be active outdoors.
Self-determination and individualisation
The municipality and/or the caregiver should whenever possible make sure to receive a written consent from the user of the alarm as well as from the family or friends that are connected to the service. This should then be seen as valid until other arrangements are agreed upon.
In many cases, the user may not fully understand completely what the alarm is and what it does and he or she may also forget giving consent to its usage. So the consent made in writing is only to be seen as guidance and if the user in one way or another communicates that he or she does not wish to keep carrying the alarm, there is no legal support for the alarm to be kept in use.
An important factor in these cases is the fact that the user can simply breach his or her consent by taking off the alarm if it feels like a violation or if it feels uncomfortable in any way. To be able to freely put on and take off the alarm is the basis of the clearest form of consent for using the alarm.
As long as the mobile unit can be removed it is fair to say that family or friends and care personal should provide assistance for the user when deciding how the alarm should be worn in order to disturb the user as little as possible.
An individual fitting of the alarm services with the user present to choose what services will be used and how, should take place. It is very important to accept the users opinions and wishes regarding what they may or may not feel comfortable with.
The user and their family or friends should in all situations be able to receive information regarding how the alarms are set up and request changes. The possibility to easily change the settings of the alarm service is therefore vital. It should be possible for changes to be made straight away if the user requests it or if the needs of the alarm has changed.
The user should in cooperation with family or friends be able to choose an individual solution for receiving alarms and for the protocol for when the alarm is used. It provides a stronger sense of security and is less of a violation of the personal integrity if it is a person known to the user that calls/answers the alarm call to make sure that everything is alright and checks if assistance is needed. The same goes for who it is that finds and helps the user when the alarm has been used.
Surveillance using GPS
People living in a certain type of residential care are under constant surveillance from care personal. There is not even a possibility to leave one’s room without it being monitored. And it is certainly not possible to go outside and take a walk on one’s own.
This constant state of surveillance is in legion and is accepted by society so that the resident is not being put at risc. Even so, it can still feel like a violation of the personal integrity and create a feeling of irritation and uneasiness.
When spending time outdoors, the Swedish Social board says that constant surveillance using GPS is not acceptable. We agree. Even if positioning functions such as GPS is available, it is not reasonable that a carer continually can see the exact position of a caretaker and his or hers daily whereabouts.
A safety area service should be designed for a GPS position to be made available only when the user is leaving a predetermined are. Technically speaking, this means that the mobile unit must determine the GPS position on a regular basis to calculate if the user is outside or within this area, but these positions are not to be made visible for anyone unless an alarm operator/family member actively chooses to view the position of the user by activating this function. This makes it impossible for the alarm to be used as constant surveillance and also for abuse from unauthorised people without it being logged in the system.
There is always a possibility to search for the user’s location via the alarm reception system. However, you should always try calling the safety mobile phone and try to establish contact with the user before searching for the position of the user. To put it simply, it is nicer to receive a phone call from someone asking how you are and what you are doing.
However, when dealing with people with certain types of diagnostics, this main rule may not be possible.
It is reasonable for an organisation offering care, to be able to offer an increased sense of safety and a more independent way of living, by being able to track a person’s whereabouts if the person in question has previously given their consent for this and chosen to wear the GPS alarm when stepping outside. If the care personal discovers that a person has left his or hers home or predetermined area for a longer period of time, without giving prior notice, the care personal or family or friends should have the right to perform a one-time- or regular tracking of the users whereabouts to determine if he or she is on their way home or moving away from the predetermined area. This is done to increase the users sense of freedom as well as being prepared if the user needs help getting home.
To prevent abuse all actions like this should be registered in a logbook in the system.
It is important that it has been made clear what responsibility the carer has for receiving an alarm and for the actions following.
To introduce limitations of a geographical area and of times when a carer is present when the alarm is in use, should only be accepted if the user may use the alarm and its functions during other times as well, and that it has been made what type of support is available at these times.
The municipalities must conform to the law regarding personal information (PuL) that demands registration of personal data in only one data registry. Carers should sign a contract with the supplier regarding how personal data should be handled in the, specific for the service, built data system that handles users personal information and user data. Complete records and data regarding the user should not be saved in the system.
Simple to use
To enable the possible positive effects of using a GPS alarm, it should be easy for the user to alarm or to contact family or friends. It should be easy to operate the alarm.
The alarm should not primarily be a surveillance unit for carers and for family or friends. It should primarily be a possibility for the user to have a more active life.
If you would like a pdf of these guidelines in English, please contact us.
Ethical guidelines for the usage of GPS alarms, updated 2015-05, in Swedish