Risks to Client Confidentiality when Communicating Health Information to Blind and Partially Sighted Persons

Mhairi Thurston, Allen Thurston

Abstract


Purpose: This research was carried out to give a more accurate picture of the particular needs of the blind and partially sighted people living in Scotland. It explores the risks to client confidentiality if information is not provided in accessible formats.

Method: Data were gathered from a survey of 228 blind and partially sighted persons in 15 Health Authorities across Scotland. The survey reported NHS clients’ experiences of receiving health information in accessible reading formats.

Results: The data indicated that about 90% of blind and partially sighted persons did not receive communications from various NHS health departments in a format that they could read by themselves.

Conclusions: The implications for client privacy, confidentiality and the wider impact on life and healthcare have been highlighted. The implications for professional ethical medical practice and for public policy are discussed, and recommendations for improved practice are made.

doi 10.5463/DCID.v24i1.182


Keywords


Patient confidentiality; blind and partially sighted patients; NHS; accessible reading formats; communication with patients

Full Text:

PDF

References


Adelman RD, Greene MG, Ory MG (2000). Communication between older patients and their physicians. Clinics in Geriatric Medicine; 16(1). Available at: http://www.cornellcares.org/education/pdf/Communications_Article.pdf [Accessed on 7 September 2010]. http://dx.doi.org/10.1016/S0749-0690(05)70004-5

Berman J J (2002). Confidentiality issues for medical data miners. Artificial Intelligence in Medicine; 26: 25–36. http://dx.doi.org/10.1016/S0933-3657(02)00050-7

Brann M, Mattson M (2004). Toward a typology of confidentiality breaches in health care communication: An ethic of care analysis of provider practices and patient perception. Health Communication; 16: 231–251. http://dx.doi.org/10.1207/S15327027HC1602_6. PMid:15090287

Carter JM, Markham N (1999). Minimising the impact of visual impairment. British Medical Journal; 319, 70. http://dx.doi.org/10.1136/bmj.319.7211.707

Clements B, Douglas G (2009). Network 1000 survey 1: Comparing the general and registered visually impaired populations. Executive summary report for the RNIB. Available at: http://www.vision2020uk.org.uk/core_files/Network%201000%20information%20sheet%20(29-06-06)%20-%20FINAL.doc [Accessed on 7 September 2010].

Department of Health (2010). The Caldicott Guardian Manual 2010. London: Department of Health.

Douglas G, Pavey S, Corcoran C, Eperjesi S (2010). Individual's recollections of their experiences in eye clinics and understanding of their eye condition: results from a survey of visually impaired people in Britain. Ophthalmic and Physiological Optics; 30: 1-10. http://dx.doi.org/10.1111/j.1475-1313.2010.00784.x. PMid:21205260

General Medical Council (2006). Good medical practice. Available at: http://www.gmc-uk.org/guidance/good_medical_practice/relationships_with_patients_good_communication.asp [Accessed on 9 September 2010].

General Medical Council (2008). Consent: Patients and doctors making decisions together. London: General Medical Council.

General Medical Council (2009). Confidentiality: Guidance for doctors. London: General Medical Council.

General Medical Council (2010a). Valuing diversity guide - Effective communications. Available at: http://www.gmc-uk.org/about/valuing_diversity_effective_communication.asp [Accessed on 7 September 2010].

General Medical Council (2010b). Personal email communication on 9th September 2010 from Vivien Cross, Standards & Ethics Section, General Medical Council.

National Health Service Scotland (2003). NHS Code of Practice on Protecting Patient Confidentiality. Edinburgh, UK: Scottish Government.

Nursing & Midwifery Council (2008). The code: Standards of conduct, performance and ethics for nurses and midwives. London: Nursing & Midwifery Council.

Nursing & Midwifery Council (2010). Personal email communication from Nicole Morgan, Registrations Department, Nursing & Midwifery Council. 13 September 2010.

Nzegwu F (2004). The experiences of visually impaired users of the N H. S. London: Guide dogs for the Blind.

O'Halloran R, Hickson L, Worrall L (2008). Environmental factors that influence communication between people with communication disability and their healthcare providers in hospital: A review of the literature within the International Classification of functioning, disability and health (ICF) framework. International Journal of Language & Communication Disorders; 43: 601-632. http://dx.doi.org/10.1080/13682820701861832. PMid:18608606

Olsen JC, Sabin BR (2003). Emergency department patient perceptions of privacy and confidentiality. Journal of Emergency Medicine; 25: 329-333. http://dx.doi.org/10.1016/S0736-4679(03)00216-6

Parr RM (2010). Better health, better care consultation: Open letter to Nicola Sturgeon MSP, Minister for Health & Wellbeing, Scottish Government. Available at: http://www.rpsgb.org/Scotland/pdfs/scotrespbetterhealthbettercare.pdf [Accessed on 9 September 2010].

Parrot R, Burgoon JK, Burgoon M, LePoire BA (1989). Privacy between physicians and patients: More than just a matter of confidentiality. Social Science & Medicine; 29: 1381-1385. http://dx.doi.org/10.1016/0277-9536(89)90239-6

Royal National Institute for the Blind (1998). Ill informed: The provision of accessible health and medical information. London: RNIB.

Royal National Institute for the Blind (2009). RNIB Annual report and accounts 2008/2009. Edinburgh, UK: RNIB.

Royal Pharmaceutical Society of Great Britain (2009). Code of conduct for pharmacy students. London: Royal Pharmaceutical Society of Great Britain.

Rumney N (1992). An optometric approach to low vision services. British Journal of Visual Impairment; 10: 89-92. http://dx.doi.org/10.1177/026461969201000304

Sadan B (2001). Patient data confidentiality and patient right. International Journal of Medical Informatics; 62: 41-49. http://dx.doi.org/10.1016/S1386-5056(00)00135-0

Scottish Government (2005). The Disability Discrimination (Public Authorities) (Statutory Duties) (Scotland) Regulations 2005. Edinburgh, UK: The Stationery Office Limited.

Scottish Government (2010). Statistics release: Registered blind and partially sighted persons, Scotland 2006. Available at: http://www.scotland.gov.uk/Publications/2006/10/30163411/1 [Accessed on 7 September 2010].

Scottish Office (1995). Disability Discrimination Act 1995: Chapter 50. Edinburgh, UK: Her Majesty's Stationery Office.

Scottish Parliament Corporate Body (2010). Patients rights (Scotland) bill [As introduced]. Edinburgh, UK: Scottish Parliament Corporate Body.

Sibley E (2009). Towards an inclusive health service: A research report into the availability of health information for blind and partially sighted people. London: Royal National Institute for the Blind.

Spielberg AR (1998). Sociohistorical, legal, and ethical implications of e-mail for the patient-physician relationship. Journal of the American Medical Association; 280: 1353-1359. http://dx.doi.org/10.1001/jama.280.15.1353. PMid:9794317

Strauss A, Corbin J (1990). Basics of qualitative research: Grounded theory procedures and techniques. London: Sage.

The Confidentiality & Security Advisory Group for Scotland (2002). Protecting patient confidentiality: Final report. Edinburgh, UK: The Confidentiality & Security Advisory Group for Scotland.

Thurston M J, Thurston A (2010). The accessibility of health information for blind and partially sighted people. Research report for Royal National Institute for the Blind.

Thurston M J, Thurston A, McLeod J (2010). Socio-emotional effects of the transition from sight to blindness, British Journal of Visual Impairment and Blindness; 28: 1-23.

Quill TE (1989). Recognising and adjusting to barriers in doctor-patient communication. Annals of Internal Medicine; 111: 51-57. PMid:2660647




DOI: https://doi.org/10.5463/dcid.v24i1.182



Copyright (c) 2015 Mhairi Thurston, Allen Thurston

Creative Commons License
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

Supported by:

netherlandsleprosyrelief_logo_rgb_-_new_logo_2014_120CBMlightfortheworld_logo_rgb_-_new_logo_2014_120     

© Disability, CBR & Inclusive Development