Abstract
Using Information and Communication Technologies (ICT) in the health sector (eHealth) is a natural progression for the digital agenda, and is seen as being of benefit to organisations providing healthcare, the patients receiving healthcare, and the development of the ICT industry. With the likelihood of a growing demand for healthcare, particularly from an increasingly elderly population, using ICT to streamline processes and support practitioners makes sense. However, the challenges faced when remodelling a sector that has traditionally operated through direct face-to-face human contact are significant. While the processes of information management and information flow may be improved from an organisational perspective, the people at the heart of eHealth, i.e. the patients, may not be convinced that such a move will be of benefit to them, even though the traditional face-to-face aspects may not be lost. In this chapter, we take the example of the United Kingdom and focus on the patient in the eHealth environment. We take the position that patient trust and confidence in ICT is important, not only for patient ‘buy-in’ but also to maintain the ethical values that are fundamental to medical practice.
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- 1.
National Health Service (NHS) National Programme for IT (NPfIT).
- 2.
Usually ‘end user’ is taken to be the person directly using the ICT system. We are taking the ‘end user’ to be the patient, as the person at the end of the ICT system for whom healthcare is provided and for whom the eHealth initiatives are aiming to support. That is, the patient is the person who is ultimately affected by the system.
- 3.
The term social capital describes the institutions, norms, trust, and reciprocity embedded in social relations that contribute to the social community, allowing society to coordinate action (Hobbs 2000; Hobbs 2001). In the context of ICT and health provision, social capital refers to the embedded relationships that exist in the institution of health provision (e.g. the National Health Service in the UK) and the need to include trust in order to utilise ‘social capital’. Thus, it is important to understand and address the impact of issues such as privacy, trust and risk, and the interdependencies between them, in order to examine population uptake of ICT historically and uptake of eHealth more recently.
- 4.
Article 12, Universal Declaration of Human Rights, available at: http://www.un.org/en/documents/udhr/, Accessed 20 August 2011.
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For example, Verisign: www.verisign.com; and TRUSTe: http://www.truste.com.
- 6.
Officially known as BCS, The Chartered Institute for IT.
- 7.
The answer options were: increased, decreased, the same, don’t know. 1,025 adults aged 16 or over were interviewed.
- 8.
Human immunodeficiency virus.
- 9.
From the UK Department of Health. Online version last modified 19 June 2009. Accessed 18 August 2011
http://www.dh.gov.uk/en/Managingyourorganisation/Informationpolicy/Patientconfidentialityandcaldicottguardians/DH_4084181 Online version last modified 19 June 2009. Accessed 18 August 2011 Online version last modified 19 June 2009. Accessed 18 August 2011.
- 10.
According to information provided by the UK NHS (www.nhscarerecords.nhs.uk/about) there are two types of patient record. One is the ‘detailed care record’ which is held locally, and the summary care record which is held nationally, and which contains patient information relating to “medicines you are taking, allergies you suffer from and any bad reactions to medicines that you have had”. The summary care record can be viewed by the patient through a website following a registration procedure. There is no detail given for a situation in which a patient does not have access to the Internet, or does not have the skill or capability (physical, cognitive) to access the website. Patients cannot themselves make changes to the record, but can ‘discuss’ their wishes with healthcare staff. There is no information given about patient access to the detailed care record. Overall it appears that there patients can have very little control of their care record—either detailed or summary. Following the statement above, this suggests they are therefore not in fact “enabled to take greater control of their care”.
- 11.
See e.g. Access to Health Records Act 1990 (UK Government: www.dh.gov.uk.).
- 12.
An overview of the UK electronic record system and what it means to patients, consent, permission to view, and who can access information is given by Dr Neil Bhatia, GP (no date of origin given on the webpage). Available at: http://www.nhsdatabase.info/ Accessed 3 August 2011.
- 13.
PalCom project funded under the EU 6th Framework Programme (IST 002057).
- 14.
See http://www.ist-palcom.org/what-is-palpable-computing/ Accessed 18 August 1011.
- 15.
Such innocence regarding privacy is not necessarily restricted to elderly people.
- 16.
Recent reports state that more than 250 laptops have gone missing from the Department of Health (UK) as well as hundreds of BlackBerrys and mobile phones. Computing July 2011.
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- 18.
For example the ‘personal information toolkit’ is entitled: “Advice on how to safeguard your personal information”.
- 19.
- 20.
A Privacy Impact Assessment (PIA) is a self assessment tool used by a certain number of organisations. The UK Information Commissioner’s office suggests the objectives of this form of assessment at an executive level are to: ensure effective management of the privacy impacts arising from the project; ensure effective management of the project risks arising from the project’s privacy impacts; and avoid expensive re-work and retro-fitting of features, by discovering issues early, devising solutions at an early stage in the project life-cycle, and ensuring that they are implemented.
http://www.ico.gov.uk/upload/documents/pia_handbook_html_v2/index.html.
- 21.
The information chain in this context would be from the end-user (patients or their carers/family members), at one end, to the healthcare practitioner or practitioners at the other. It would include the responsibilities of people or companies providing the ICT system and ICT communication link involved in that chain (such as an Internet Service Provider).
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Duquenoy, P., Mekawie, N.M., Springett, M. (2013). Patients, Trust and Ethics in Information Privacy in eHealth. In: George, C., Whitehouse, D., Duquenoy, P. (eds) eHealth: Legal, Ethical and Governance Challenges. Springer, Berlin, Heidelberg. https://doi.org/10.1007/978-3-642-22474-4_12
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