Finding Ethical Principles and Practical Guidelines for the Controlled Flow of Patient Data

Abstract

The application of computing to health care, and particularly to electronic patient records, offers major benefits but raises issues of confidentiality and of potential misuse. Sound access control mechanisms are therefore important, but most models focus upon informed consent by the data subject. This raises challenges in mental health care, and for other vulnerable patients including those comatose, and the severely ill and temporarily distressed. Published algorithms which are used to control record access within a controlled environment therefore have value, as a means of ensuring an open and informed, yet ethically sound, solution. The paper describes the background and issues, and gives an example of such an algorithm.

Keywords

Ethics - Electronic Patient Records - Duty of Care - Confidentiality

• REFERENCES

• 1 Noyes P. Child Abuse – A Study of Inquiry Reports 1980-1989; . HMSO; London: 1991
• 2 Rigby MJ. An Electronic Patient Information System in Mental Health – An Integrated Solution for Better Care and Management. in Adlassnig K-P. Grabner G, Bergtsson S, Hansen R. (eds). Medical Informatics Europe 1991, Proceedings Vienna, Austria, 1991; . Berlin: Springer-Verlag: 1991
• 3 Rigby MJ, Robins SC. A Networked Patient-Based Integrated Care System as a Basis for the Achievement of Quality in Practice;. in Roger-France F, Noothoven van Goor J, Staehr-Johansen K. Case-Based Telematic Systems Towards Equity in Health Care (Studies in Health Technology and Informatics Vol. 14); . Amsterdam: IOS Press; 1994
• 4 Royal College of Psychiatrists: Report of the Mental Health Information Systems Working Group; . London: Royal College of Psychiatrists; 1992
• 5 Ritchie JH. (Chairman) et al. The Report of the Enquiry into the Care and Treatment of Christopher Clunis; . London: HMSO; 1994
• 6 Anderson RJ. Security in Clinical Information Systems; . London: British Medical Association; 1996
• 7 Draper R. Electronic Patient Records: Usability vs Security, with Special Reference to Mental Health Records;. in Anderson R. (ed.): Personal Medical Information – Security, Engineering, and Ethics: Personal Information Workshop, Cambridge UK, June 21-23 1996 Proceedings; . Berlin: Springer-Verlag; 1997
• 8 Roberts R, Thomas J, Rigby M, Williams J. Practical Protection of Confidentiality in Acute Care;. in Anderson R. (ed.): Personal Medical Information – Security, Engineering, and Ethics: Personal Information Workshop, Cambridge UK, June 21-23 1996 Proceedings; . Berlin: Springer-Verlag; 1997
• 9 Rigby MJ. Child Health – A Time for Better Understanding?. Health Trends 1981; 13: 97-9.
• 10 Rigby MJ, Tiplady P, Osborne D. Principles, Ethics and Law in Preventive Child Health,. in Barber B, Cao D, Quin D, Wagner G. Medinfo 89, Proceedings of the Sixth Conference on Medical Informatics, Beijing and Singapore 1989; . Amsterdam: North Holland: 1989
• 11 Cushman R. Exeptionalism Redux. How Different is Health Care Informatatics?. In Anderson R. (ed.): Personal Medical Information – Security, Engineering, and Ethics: Personal Information Workshop, Cambridge UK, June 21-23 1996 Proceedings; . Springer-Verlag:; Berlin: 1997
• 12 Woodward B. Information Management as Risk Management;. in Anderson R. (ed.). Personal Medical Information – Security, Engineering, and Ethics: Personal Information Workshop, Cambridge UK, June 21-23 1996 Proceedings; . Springer-Verlag:; Berlin: 1997
• 13 www.cpri.org/resource/docs/access.html
• 14 Commission on Physical Sciences, Mathematics, and Applications.. For the Record: Protecting Electronic Health Information . Washington DC: National Academy Press; 1997
• 15 www.emory.edu/WHSC/MED/HTN/~achung/hippocrates.html
• 16 Beauchamp TL, Childress JF. Principles of Biomedical Ethics (third edition); . New York: Oxford University Press; 1989
• 17 Rigby MJ, Robins SC. A Networked Patient-Based Integrated Care System as a Basis for the Achievement of Quality in Practice. in Roger-France F, Noothoven van Goor J, Staehr-Johansen K. Case-Based Telematic Systems Towards Equity in Health Care (Studies in Health Technology and Informatics Vol. 14); . Amsterdam: IOS Press; 1994
• 18 Rigby M. Keeping Confidence in Confidentiality: Linking Ethics, Efficacy, and Opportunity in Health Care Computing – A Case Study;. in Anderson R. (ed.): Personal Medical Information – Security, Engineering, and Ethics; Personal Information Workshop, Cambridge UK, June 21 - 23 1996, Proceedings; . Berlin: Springer-Verlag; 1997: 129-50.
• 19 Draper R, Rigby M. (eds.). Towards an Ethical Protocol for Mental Health Informatics – Key Conclusions from an International Working Conference held at Hospitaller House, Stillorgan, County Dublin on 12th June 1997; . Dublin: Hospitaller Order of St. John of God, Stillorgan; 1997
• 20 Innes J. Privacy, Intimacy, and Isolation; . Oxford: Oxford University Press; 1992
• 21 Rigby MJ. Electronic Patient records – Confidentiality, Access, and the ‘Need to Know’, a discussion paper; . Plymouth: Plymouth Community Services NHS Trust; 1995
• 22 Hospitaller Order of St. John of God. Principles for the Legal and Ethical Governance of Electronic Record Systems Related to Service Users; . Dublin: Hospitaller Order of St. John of God, Stillorgan, Co.; 1998