discussion 5

Discuss the greatest principles in health informatics ethics.  Make sure to read about the “Road from Nuremberg” and it’s relation to medical ethics.

Chapter 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

Chapter 12: Consumer Health Informatics

WILLIAM R. HERSH

M. CHRIS GIBBONS

YAHYA SHAIHK

ROBERT E. HOYT

Learning Objectives

After reviewing the presentation, viewers should be able to:

Identify the origins of consumer health informatics (CHI)

Discuss consumer health informatics tools

Enumerate the features and format of personal health records

Identify patient to physician electronic communication tools

Outline CHI barriers and challenges

Discuss future trends of CHI

Clearly, consumers (patients) are interested in technology as a means to improve access to medical care, improve communication with physicians and others and generally streamline the healthcare process
Consumer health informatics emerged with the confluence of widespread availability of the Internet and online information resources with the consumer movement that aimed to empower those who were ill (patients) and not yet ill (consumers) with information to maintain and improve their health as well as engage in the treatment of their disease
Introduction

Origins of CHI
Creation of the Internet in 1994 opened the door to consumers searching for medical information
Chronic diseases are on the rise and the population is aging; thereby increasing the need for more information and more tools
It has been known for over a decade that consumers want access to their health information online. A study by Deloitte in 2008 found that 60% of individuals surveyed wanted physicians to provide online access to their medical records and test results as well as online appointment scheduling

e-Health Era
Consumers want to interact directly with the healthcare system online
One important consumer health application is the personal health record (PHR)
The Markle Foundation provided an early definition of PHR in 2004, defining it as “an electronic application through which individuals can access, manage, and share their health information, and that of others for whom they are authorized, in a private, secure, and confidential environment”

Tang 2006 categorized three types of PHRs:
The tethered PHR, which is an extension of the healthcare provider’s EHR
The standalone PHR, which is an isolated application. It may be on a mobile device or a website
The interconnected or integrated PHR. This is a separate application, but it has the ability to interact with one or possibly more provider EHRs.
Types of PHR
The tethered PHR

Patient Access to EHR
OpenNotes aims to provide patients with access to the entirety of their medical record, including clinical notes (Delbanco 2010). OpenNotes was initially implemented in three academic centers across the US
There is growing consensus that patients should be the owners and stewards of their personal health and healthcare data (Hersh 2017). Current systems do not facilitate this point of view, as data is for the most part stored in the siloed EHR and other systems of the places where they obtain care

In 2016, the ONC outlined patient engagement to include providing patients an electronic copy of their discharge instructions, providing patients an electronic copy of their health record within three business days, and identifying and providing patient-specific educational resources
But how much patient engagement is actually being done? The next slides show data from the ONC
Patient Engagement

Patient Engagement
Proportion of US hospitals that allow patients to view, download, and/or transmit data (ONC 2016)

Patient Engagement
Patient engagement functions available from US hospitals (ONC 2016)

Patients want to communicate electronically via email with their clinicians and the healthcare system
Seth et al. found three-quarters of patients in an urban family medicine clinical in Ontario would be interested in receiving test results and other communications by email, especially among those who were frequent users of email (Seth 2016)
However in the next slide there are some challenges with email communication
Patient – Clinician Electronic Communication

There are some instances when patients do not prefer email notification of test results, which is when they convey potentially bad news (Friedman 2016)
A study of physician concerns included the overload of messages, no ability to triage them (although most systems have that capability now), the insecurity of standard email, and the ability to be able to read and reply to messages in a timely manner (Anton 2016)
Patient – Clinician Electronic Communication Challenges

A Price Waterhouse study in 2010 estimated that 20% of outpatient visits could be eliminated by using e-visits. Virtual visits have the advantages of much better security and privacy and the ability to have a third party involved in the billing process
Telephonic and Audio-visual Communication
Remote patient communication continuum

An example of an e-visit service tethered to the enterpris EHR, is displayed in the Infobox below
Telephonic and Audio-visual Communication

Virtual Visits at OHSU

 
Oregon Health & Science University (OHSU) began offering virtual visits for urgent care in 2017. Patients can establish a live video chat using their computer, tablet or smartphone. This service is offered from 7 am to 10 pm seven days a week and that includes children over age 1. A list of the common disorders treated is on the service Web site. (https://www.ohsu.edu/xd/health/services/virtual-care/). Appointment availability is posted, and patients just need to confirm the time. Consent forms are also available to complete before the visit.
The service is staffed by nurse practitioners and physician assistants. This service is only for residents of Oregon due to licensing laws. All or part of the virtual visit is covered by most insurance companies with a maximum charge of $49. All visits take place through the patient portal MyChart that is part of OHSU’s Epic EHR system. The patient can see a summary of their visit afterwards and the same summary is forwarded to their primary care provider.

There have been many studies on electronic patient engagement beyond email
Davis-Giadina’s systematic review assessed patient access to medical records and clinical outcomes and found that the association was equivocal between access and improved outcomes (Davis-Giadina 2014)
There are, however, some concerns about PHRs. One systematic review found that PHRs require a wide range of health literacy demands on patients and healthcare providers (Hemsley 2017)
Efficacy of Consumer Health Informatics

The CHI field is evolving at an exceedingly fast pace. Providers and other stakeholders are using digital health tools
The use of technologies such as smart phones, social networks and apps are providing innovative ways to monitor health and well-being, providing greater access to information as well as leading to a convergence of people, information, technology and connectivity to improve health care and health outcomes (FDA Digital Health)
CHI AND HEALTHCARE REFORM

As average length of hospital stays decrease in the US, a growing body of literature is demonstrating the value and role of so called “Hospital at Home” models of care delivery. Perhaps as much as 15-25% of the total volume of care delivered in the future will be some variation of this hospital at home model of care
The next slide shows the future organization of healthcare delivery
CHI AND HEALTHCARE REFORM

CHI AND HEALTHCARE REFORM
The future organization of healthcare delivery

Conclusions
It is likely that patients and consumers will increasingly interact with the healthcare system in electronic ways
Questions remain about a number of issues, such as where data will reside, who will control it, and how it will be entered, accessed, and used
Continued research must inform the optimal ways in which data and information systems can be used to improve patient health and treatment of disease as well as the delivery of healthcare