Social Care Institute for Excellence: Telecare and Telehealth Ethics
Introduction
The Social Care Institute for Excellence (SCIE) will shortly be publishing a report highlighting the complex ethical issues relating to the commissioning and provision of telecare services for people with cognitive impairments, including dementia. The report, based on work by the Welsh Centre for Learning Disabilities, also explores how those issues can be addressed in practice. It became clear that there was a need to address the ethical issues relating to the growing telehealth industry, and so ‘telehealth ethics’ will constitute the next stage of work. This article presents some of the issues relating to the ethical delivery of a telecare service and introduces our next planned project on telehealth, inviting you to become involved in this important area of work.
Telecare ethics: the main issues
The telecare project has been supported by an enthusiastic advisory group, including representatives from the Foundation for Assistive Technology (FAST), hft, Tunstall, academics and local authority commissioners. The Welsh Centre for Learning Disabilities was commissioned to undertake the work and used the Delphi method to elicit views from a panel of experts about the ethical issues relevant to telecare.
Two key ethical issues relating to the ‘pre-installation’ period of the commissioning and provision of a telecare service were identified.
- Informed consent
Telecare can have a significant impact on people’s lives and, as such, it should be the individual who decides whether to use it. However, gaining informed consent to use telecare among people with cognitive deficits is probably one of the most challenging ethical issues. Our report suggests that the Mental Capacity Act (2005) Code of Practice [1] should be referred to for advice on conveying information clearly to the individual using creative approaches, with the overarching concern of balancing protection and autonomy.
- Installing the service
If telecare installation is not handled well, it can threaten the positive outcomes that might be gained from the service. To address this, it is vital that the people installing telecare receive training and support so that they can properly understand the needs of people with cognitive impairments, take a person-centred approach, and ensure that the telecare service can support the user more effectively. It will also be important for those installing telecare to work closely with individuals’ families – for instance, ensuring that a family member or supporter is present for the installation, especially where the person has communication or cognitive difficulties.
Two key ethical issues relating to the ‘post-installation’ period were identified.
- Privacy
It is inevitable that when people receive social care support in their own homes, there is a trade-off between the help received and some reduction in privacy. Telecare can involve a similar trade-off, with information on people’s personal lives and behaviour being collected by monitoring centres. Threats to privacy come from how people’s information is held and used. Our report suggests that information should be securely stored and should only be accessible to social care and telecare professionals on a ‘need to know’ basis. It is also crucial that people using telecare should receive a full explanation about what information is going to be recorded and for what purpose.
- Equity in accessing telecare
One of the biggest problems with equitable access is that people with certain sensory impairments or whose first language is not English have a limited opportunity to benefit from telecare. Our report calls for greater flexibility in the languages and means of communication that messaging, prompting and monitoring centres offer. This will enable telecare to be considered as a mainstream support option, and one that is not restricted in its potential by people’s needs or characteristics.
The issues outlined here represent just a few of those that have been highlighted through our telecare project. Our full report and ‘at a glance summary’ will be available on our website in March 2010.
As mentioned, SCIE is planning a subsequent project on telehealth ethics.[2] Recent discussions with The King’s Fund and Department of Health and workshop feedback from the recent WSDAN event in Stansted suggest that there are ethical issues that are distinct to telehealth. These include: the distinct needs and profiles of users of the different technologies; the particular demands that telehealth places on the service user; and the considerably higher costs of telehealth compared with telecare.
Support from experts through the project advisory group will be crucial to the success of our proposed telehealth ethics project. If you would like to become involved as an advisory group member, please contact us. It is also SCIE’s view that people using telehealth services would bring expertise to the project, so if you use services yourself or know someone who does, please contact us.
[1] Department for Constitutional Affairs (2007). Mental Capacity Act 2005 Code of Practice. London: The Stationery Office.
[2] We are working with a description of ‘telehealth’ that matches the one used in the Whole Systems Demonstrator work in this overview document: www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_100946