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ALHEChapter11_Health_Informatics_Ethics.pptxChapter 11: Health Informatics Ethics
Ken Masters PhD
Learning Objectives
After reviewing the presentation, viewers should be able to:
Describe the 20th century medical and computing background to health informatics ethics
Identify the main sections of the IMIA Code of Ethics for Health Information Professionals
Describe the complexities in the relationship between ethics, law, culture and society
Describe different views of ethics in different countries
Summarize the most pertinent principles in health informatics ethics
Discuss the application of health informatics ethics to research into pertinent areas of health informatics
Discuss appropriate health informatics behavior by medical students
Introduction
The Nuremberg Code
Related to the Holocaust (death of 11 million people by the Nazis)
Medical crimes against humanity were committed
Code established voluntary consent and right to withdraw from experiment and right to qualified medical experimenter
World Medical Associations (WMA) Declaration of Helsinki
Added the right to privacy and confidentiality of personal information of research subjects to the Nuremberg Code
Informatics Ethics
International Medical Informatics Association’s (IMIA) Code of Ethics. Very expansive. Duties include:
Patient-centered
Healthcare professionals centered
Institution centered
Society centered
Self centered
Profession centered
International Considerations: Ethics, Laws and Culture
Influenced by a country’s laws and culture
The relationship between ethics, law, culture and society is unclear, is not fixed internationally, and may be fluid even within a given country over time
Three Different Views of Ethics
Ethics does not exist outside the law, and exists only for the good of a properly ordered and legal society
Ethics is usually strongly informed by the law, society, and the prevailing culture, and are extensions of these
Ethics exists entirely outside of the law, and is a matter of personal conscience. Where there is conflict the ethical viewpoint must prevail
Pertinent Ethical Principles
Right to privacy
Guard against excessive personal data collection
Security of data
Integrity of data ; must be kept current and accurate
Informed consent for patients
Awareness of existing laws
Medical ethics applies to health informatics ethics
Sharing data only when appropriate
Clinicians have broad responsibilities towards entire community
Clinicians must practice beneficence
This responsibility can not be transferred
Difficulties Applying Medical Ethics in the Digital World
How to obtain informed consent for the use of patient data in large databases?
Obtain broad informed consent
One should guard against corporate ownership of databases
Research on electronic postings: privacy and disclosure depends on which model is adopted
Human subject model-extension of the medical view
Textual object model -only rules of plagiarism and copyright apply
Challenges in Transferring Ethical Responsibility
Researchers must obey the law, but laws do not establish ethics
Submit a protocol to Ethics Committee or an Institutional Review Board (IRB) but members may not be familiar with subtleties of health informatics
Keep data secure by transferring responsibility to database manager takes full responsibility, but ultimately the researcher is still likely to be responsible
Electronic Communication with Patients and Caregivers
American Medical Associations (AMA’s) guidelines provide medico-legal advice:
Make patient aware of who is reading the email
Delineate types of email topics that are acceptable
Use of appropriate language
Provide tips for patients to ensure they can quickly reference relevant emails
Do not use email communication with new patients
Measures to Ensure Documents Are Understood
Flesch Reading Ease Test
Assigns a value of 1 (most difficult) to 100 (easy)
Flesch-Kincaid Test
Assigns a number corresponds to US school grade (1 – 14)
Microsoft Office Word. Under Options >> Proofing
Provides readability score based on Flesch Reading Ease and Flesh-Kincaid Grade level
Simple Data Protection
Encryption programs to encrypt hard drive, folders or files
TrueCrypt – free software www.truecrypt.org
Password and document encryption protection
Anti-virus programs
Anti-spyware and malware software
Erase computer hard drives before discarding
Consider using encrypted email with programs (plug ins) such as Mailvelope
Limiting Collection of Visitor Data to Your Website
Most web sites use tracking cookies or tracking tools that are used without consent or even notification
Ideally should obtain consent and state clearly
What information will be gathered?
How will it be stored and secured?
With whom will it be shared?
For how long will it be kept and then destroyed?
Health Informatics Ethics and Medical Students
Students should be careful about online comments and photographs of themselves, colleagues and patients on social networks
Care in the use of mobile devices with cameras
For all research projects, big or small, follow IRB guidance
Avoid plagiarism
Avoid paper mills
Manipulation of electronic files. Ensure copyright is not violated
Avoid recording of lectures without consent
Avoid using pirated digital files
Avoid accessing documents illegally
Health informatics ethics stems from medical ethics
The IMIA Code of Ethics contains guidelines for multiple categories
The relationship between ethics, law, culture and society is fluid and must be monitored
The pertinent ethical principles are: right to privacy, guarding against excess, security and integrity of data, informed consent, data sharing, beneficence and non-maleficence and non-transferability of responsibility
Conclusions
