Ethical Health Informatics

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Laurinda B. Harman, Ph.D., RHIA, FAHIMATemple University College of Public Health

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Prepared By:Laurinda B. Harman, Ph.D., RHIA, FAHIMATemple University College of Public Health

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ETHICAL HEALTH INFORMATICSLorman Education Services

Laurinda B. Harman, Ph.D., RHIA, FAHIMA

Associate Professor EmeritusTemple University, Philadelphia, PA

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AGENDA

We will review:

• Ethical principles that can offer guidance when responding to difficult informatics problems  • Ethical issues for the uses of information, electronic health records, management of sensitive information, consumer and professional informatics• Privacy, confidentiality and security• The HIPAA, GINA and HITECH Acts• An ethical decision‐making matrix to organize a response to an ethical problem • Components to build an ethical system at work

THE PAST …basement, next to the morgue

Paper repository of information

Access limited to one person at a time

Retrospective documentation – documentation

6 months – 2 years after discharge

Lost records; filing backlogs; delays in care due to unavailability of information; illegible handwriting

Physician in control release of information

Patients rarely reviewed

Admissions:  annual physical examination or UGI series

Reimbursement:  Whatever it cost

Usual, customary and reasonable

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THE PRESENT

Interactive, computer‐based systems

Many stakeholders and reviewers ‐ multiple, simultaneous access 

Patients need hospital care

Patients routinely review their medical record and some keep their own Personal Health Record (PHR) – flashdrive, paper

Discharge:  documentation done at discharge except in few exceptions  

Government involvement ‐ $ and review

HIPAA, GINA, HITECH acts 

NEED INTEROPERABILITY

VALUES

Personal:  right or wrong; moral values; taught by family, teachers, religion, government…Basis of ethical decision‐making

Professional:  •Competency•Education• Integrity – can be trusted; tell the truth•Compassion•Dedication to professional roles

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CRITERIA FOR MAKING DECISIONSETHICAL QUESTIONS

Criteria to make a decision can be cost, technology, expertise, meet standards of care….

ETHICAL QUESTIONS

SHOULD I DO THIS?

WHAT SHOULD I DO?

HOW SHOULD I BEHAVE?

WHAT IS THE BEST ACTION, GIVEN THE COMPETING INTERESTS, OBLIGATIONS AND VALUES?

ETHICS

Ethics:  “The formal process of intentionally and critically analyzing a problem, taking into account all the facts, professional obligations and ethical principles and values of those involved in the decision” J. J. Glover, pg. 51

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ETHICAL PRINCIPLES

BENEFICENCE  ‐‐ do good

NONMALEFICENCE  ‐‐ do not harm 

JUSTICE  ‐‐ treat others, who have competing interests, with fairness

AUTONOMY  ‐‐ self‐determination

PRIVACY  ‐‐ right to be let alone

PRIVACY, CONFIDENTIALITY, SECURITY

Privacy—right to be let alone; patient controls access

Confidentiality—protection of information collected 

Security—physical and electronic protection of data, organizes the resources needed to enter, store, process and communicate the information to authorized users; protects information from accidental or intentional disclosure

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SYSTEM COMPLEXITY

The health information system is extremely complex 

Data can be entered manually, electronically, through PDAs, wireless systems, from laptops, from many systems and locations…

Healthcare systems cross geographical boundaries and utilize many different software and hardware applications for patient care and research – not a single template 

• Cold feeds for lab, radiology et al.

•MultiMedia formats—Images, videos, voice files

• Patient‐provider e‐mail communication 

• System generated clinical reminders or prompts

ERRORSPaper documentation

cross out, sign and date 

write in right medical record with note for mistake, date, signature

Electronic errors 

Electronic information can have many instantaneous locations with errors, copied and re‐copied

John A and John B

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HEALTH INFORMATION ETHICAL PROBLEMS

• Uses of information• Compliance, Fraud and Abuse• Coding• Quality Management• Public Health• Clinical care at the end of life

• Electronic health information systems• Integrated Delivery Systems• Electronic Health Record Systems• Information Security• E‐Health for consumers, patients, caregivers

• Management of sensitive information• Substance abuse, behavioral and sexual• Adoption• Genetic

Consumer and professional informatics• Management and Leadership• Advocacy and Interdisciplinary Collaboration

COMPLIANCE, FRAUD AND ABUSE 

Process from delivery of care to submission of bill

Involves all facilities:  hospitals, home health, physician offices, long‐term facilities…

Dishonest motivations (more money) can result in fraud, and penalties can include prison

Ethical case:  physician documentation doesn’t justify bill

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CODING

Translating documentation to numerical codes –

ICD‐10, CPT, HCPCS

Ethical cases:  upcoding and unbundling

•Upcoding (15 vs 30 minute encounters)

•Unbundling (surgical packet, charge for each item)

QUALITY MANAGEMENT

Rising costs, scarce resources, hierarchical structures and conflicting values cause ethical problemsQM audits to find out if standards are being met

Ethical cases:

Reporting hospital‐acquired conditions

Failure to check physician’s licensure status

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PUBLIC HEALTH

Balance patient information control with government’s need for information to protect the publicCommunity interests vs individual patient advocacy If patient has a reportable disease, such as, syphilis, patient does not control access; healthcare facility or provider of care must report to PHContact tracing and partner notification

Ethical case:

Gun control and reporting mental health status

CLINICAL CARE AT THE END OF LIFE

People want to have a “good death”

Frailty, life expectancy, hearing and vision loss, chronic conditions, cognitive impairment

Ethical case:  

Treatment choice ‐ Palliative vs. curative or treatment care

Physician doesn’t tell patient that care is palliative, nurse walks thinking that this has happened and patient and family are traumatized

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INTEGRATED DELIVERY SYSTEMS

Consistency and security of electronic information across a continuum of care

Privacy, security, data quality policies and procedures

Virtually every healthcare facility and provider are involved

Longitudinal health documentation – physician office, hospital, rehab, hospice…

Ethical case:  inconsistencies in Patient Identity Management System (MPI)

ELECTRONIC HEALTH RECORD SYSTEMS

Use of computers to collect, manage and disseminate informationNeed to collaborate 

Ethical cases:

Health literacy and equity to computers and information

Differences when linking EHR systems during development and implementation

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INFORMATION SECURITY

Information in all technological applications must be protected – EHRS, Internet, e‐mail, social media…

Password management, disaster recovery, back‐up systems

Ethical cases:  

Storing data on laptops, electronic devices

Hacking

E‐HEALTH FOR CONSUMERS, PATIENTS, CAREGIVERS

Concerns

•Quality of information  

•Access by unauthorized individuals•Patient‐entered data (PHR) vs. EHR (facility)

•Interoperability•Equity to computers & information

•Privacy

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SUBSTANCE ABUSE, BEHAVIORAL HEALTH AND SEXUAL INFORMATION

Ethical cases:

Verifying admission can violate privacy

Safety of patient vs. privacy of citizen

ADOPTION

Access to information:  state laws, all different; no federal

Open access state legislation

Families are not biologically related

Mother: Natural, biological, birth, surrogate

Father:  legal, natural, biological, birth, putative‐ alleged

Ethical cases:

adoptee seeks information on biological donors

birth mother seeks information on biological child

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GENETIC INFORMATION

Ethical cases:

risk vs. actual; misunderstanding of information

discrimination in employment and insurance

Genetic Information Nondiscrimination Act (GINA) 2008applies to all 50 states and US territories

MANAGEMENT AND LEADERSHIP

Ethical case:  Employee in probationary periodlateness and absenteeism ‐ fire or notwoman with 3 children, gets up, feeds, gets children to school, herself to work on bus; competent when doing work

Fire = follow policy for probationary status late 3xDon’t fire = why would we fire a woman with children, eliminate her income…welfare

How is society served?

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TECHNOLOGY:  CUT & PASTE

Documentation shortcut to save time—click, copy, paste

Tempting—Don’t do it

Misrepresentation of care—false information

Inaccurate or outdated information may adversely impact patient care 

Audit trails by government—patient not the same over time

Clinical plagiarism

Fraud—OIG or Medicare auditor

PATIENT PORTALS

Availability of electronic patient information which the patient can access using an ID and password

Patient might be harmed by finding unexpected information; might misinterpret information (diagnoses, medications, clinical notes) causing worry or confusion 

Systems might not be secure; unauthorized access 

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HIPPA 1996, 2013, GINA 2008 HITECH Act 2009

Health Insurance Portability and Accountability Act (HIPAA)

Genetic Information Nondiscrimination Act (GINA)

Health Information Technology for Economics and Clinical Health (HITECH)

HIPPA (1996, 2013) and HITECH Act (2009) mandate security systems with criminal and civil penalties for violations

HIPAA AND ACCESS TO INFORMATION

College student addicted to painkillers, on parents insurance and got care.  Also snorting heroin, which physicians knew but didn’t tell parents because of HIPAA.

Student died.  Father said that he would have made him go to an in‐patient rehab center for heroin addiction. 

Father claimed the HIPAA legislation was a barrier to getting information about the seriousness of his son’s health. 

Does HIPAA become a shield to prevent family access to information? 

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GINA PROHIBITSENFORCEMENT

Insurers cannot use genetic information to determine eligibility or cost of premiums

Insurers cannot request or require a genetic test

Employers cannot use a person's genetic information when making employment decisions 

Employers cannot request, require, or purchase genetic information about persons or their family members

Will be enforced by the Departments of Health and Human Services, Labor, and Treasury, along with the Equal Opportunity Employment Commission (EEOC)

remedies for violations include corrective action and monetary penalties

HITECH• HITECH presents an opportunity to transform how health care organizations manage patient access to their protected health information (PHI). 

• HITECH has placed emphasis on patient engagement through providing them with an electronic copy of their information, including diagnostic test results, problem lists, medication lists, and medication allergies, on request. 

• HITECH limits the fees that individuals may be charged for their PHI to the reasonable costs of labor for copying the PHI plus supplies and postage. 

Are you doing patient engagement and charging appropriately to give a copy of information to patient?

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RELEASE OF INFORMATION FEES

Can establish two separate tracks for managing release of information (ROI) under HITECH: one track for patients requesting access to their PHI and another for third parties that use the information to make a profit. Establishment of distinct policies, procedures, and fee structures for the two groups will help simplify and clarify a health care organization’s ROI functions.

Patients – 2/page

Lawyer ‐ $10/page

Many facilities are giving information to the patients for free – the information belongs to the patient, not HCS

MEDICAL IDENTITY THEFT

Medical identity theft occurs when someone uses a person’s name, insurance or Social Security Number to obtain medical services or goods…or when someone uses the identity to obtain money by falsifying claims for medical services and Medicare   

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IMPORTANCE

IMPORTANT because the central problem is falsification of medical documentation that can affect the “real” patient in future dealings with the health care system

WHO COMMITSWHO IS REAL PATIENT

Who commits medical identity theft?

An unknown person in order to obtain medical care 

ISSUE:  WHO IS THE REAL PATIENT?

THIS IS NOT A BILL

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INFORMATION CRIME

Information crime relatively easy to do

Stakes are high, temptations are huge, given that individuals could get paid to provide or falsify the information

Difficult to detect

Virtually no protections for the patient

Even more difficult to remedy on the part of the patient

CREATE AN ETHICAL SYSTEM AT WORK

EDUCATION

Ethical degrees, courses, sessions

Understand various Codes of Ethics – HIM, PT, MD, NURSE…

Make sure that everyone respects the importance and sacredness of the information in a patient’s medical record

Teach the importance of ethics so that all employees avoid the temptation to misuse information

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CREATE AN ETHICAL SYSTEM AT WORK

CONSULT WITH ETHICS COMMITTEEnot just for clinical problems

• Releasing information

• Data analytics

• Fraud and abuse

• Electronic health record

• Patient portals

COLLABORATE WITH COLLEAGUES:  INTERDISCIPLINARY COLLABORATION

BE A ROLE MODEL OF ETHICAL BEHAVIORHelp those who are demonstrating unethical behaviors

Don’t embarrass…educate

ADVOCACY AND INTERDISCIPLINARY COLLABORATION

Advocacy is ethics in action ‐ choosing to take a stand for and speak out for the rights or needs of a person, group, organization, or community. 

Advocate for changes in policy and legislation to ensure protection of privacy and confidentiality, compliance, and other issues that surface as advocacy issues and facilitate informed participation by the public on these issues

Patients, peers, staff, healthcare organization, community and society

Build interdisciplinary collaborative teams with health care providers, HIM and IT professionals, privacy and security experts, legal representatives ethicists and patients.  We don’t want the perspective of “one” but that of “many”

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ETHICAL DECISION‐MAKING MATRIX HIGHLIGHTS

Tool to help you organize complex, ethical problems

No simple fill in the box approach 

Follow each step of matrix and not go directly to your decision

Understand the values and options for action

You can make equally compelling ethical arguments for different decisions as long as you follow the steps in the matrix

FAMILY & FRIENDS:  SHOULD I TELL?

Mary is a health information management (HIM) student on a clinical rotationHer mother asks Mary her to find out what is wrong with Ruth, their next‐door neighbor. Ruth has been admitted to the hospital twice in the last three monthsMary learns that Ruth was hospitalized due to physical abuse by her husband Mary realizes that another medical record she is reviewing belongs to Ron, her best friend’s fiancé. Mary learns that Ron has a drug abuse problem and was recently diagnosed with HIV disease. Mary will be the maid of honor at the wedding of Ron and Patricia two months from now, and she thinks that Patricia does not know about Ron’s problems. Mary becomes really worried and wonders whether she should tell her best friend what she has learned, since Ron’s conditions could definitely affect Patricia’s health and the quality of her married life.

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FAMILY & FRIENDS:  SHOULD I TELL?STEPS 1 AND 2

Before beginning, ask yourself what is my gut reaction to this problem on an emotional level; what assumptions am I making?  What biases do I have?

1. What is the question?Should Mary tell her mother about Ruth being abused?Should Mary tell Patricia about Ron’s drug problem and HIV status?

2. What are the facts? – Known and To Be GatheredKnown• Ruth hospitalized because of physical abuse by husband; • Ron’s medical record indicates a drug abuse problem and he has been diagnosed with HIV

To Be Gathered• Would Mary violate confidentiality by telling her mother and her friend about what she has learned from the medical records? • Did Ron contract the HIV disease from Patricia?• Does Patricia already know about Ron’s diseases but she wants to marry him anyway?

FAMILY & FRIENDS:  SHOULD I TELL?STEP 3

3:  What are the values? Examine the shared and competing values, obligations and interests of those involved in the problem in order to fully understand the complexity of the ethical problem(s).

STAKEHOLDERS/ADVOCATES

Patient:  Right to privacy and confidentiality of medical and health information; Moral obligation to society not to transmit communicable disease

Family:  Honesty; caring relationship; health for family members

Health care professionals:  Integrity: protect confidentiality of patients and information learned in the course of professional work; avoid harm to others; fairness: follow the rules; Legal:  obligations regarding privacy and confidentiality; Administrators:  Legal obligations regarding protection of privacy and confidentiality

Society:  Desire to be kept from harm; Need for privacy and confidentiality of medical information

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FAMILY & FRIENDS:  SHOULD I TELL?STEPS 4 AND 5

4.  What are my options?Refuse to reveal information to family and friendsTell the mother about the neighbor’s abuse and the friend about the fiancé’s drug addiction and HIV disease

Personal vs professional knowledge of the problemWould Mary be more justified in revealing patient information if Patricia was not her best friend, but her sister?  Why or why not?

5.  What should I do?Protect information and do not reveal what has been learned to family and friends Maintain patient confidentiality by keeping information about patients private

FAMILY & FRIENDS:  SHOULD I TELL?STEPS 6 AND 7

6. What justifies my choice?JUSTIFIEDFollow rules of patient confidentiality; Respect patient privacy; Preserve integrity of the information system; Avoid possible legal ramifications of breaking confidentiality

NOT JUSTIFIED

Tell mother about neighbor’s information and friend about fiancé’s drug problem and HIV disease

Make exception to the rules of confidentiality

Risk lawsuit due to violation of privacy

7. How can I prevent his problem?Assure educational program addresses the special issues related to reviewing health information for family and friends during the course of work 

Change the system so that professionals do not work with the medical information of people they know

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TODAY AND TOMORROW

EHRS – for hospitals, physician practices and other health care facilities; here to stay

Medicare and Medicaid incentives and penalties

Increasingly share clinical measures and standards

Health information exchanges – with interoperabililty

Personalized care – individualized evidence‐based pharmaceutical interventions based on genetic information

RESOURCE

Harman, L. B. & Cornelius, F. H. (Eds.) (2017).  Ethical Health Informatics:  Challenges and Opportunities, 3rd ed.  Burlington, MA:  Jones & Bartlett Learning.

Laurinda B. Harman, PhD, RHIA, FAHIMA, Temple University, editor

Frances H. Cornelius, PhD, MSN, RN‐BC, CNE, Drexel University, editor

Case “Family and Friends:  Should I Tell?” Rinehart‐Thompson, L. A. & Harman, L. B.  (2017).  Privacy and Confidentiality.  In Harman, L. B. & Cornelius, F. H. (Eds.). (2017).  Ethical health informatics:  Challenges and Opportunities (3rd.ed.), Burlington, MA:  Jones and Bartlett. pp.75‐76 (case) and 89‐90 (matrix). 

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Harman, L. B. & Cornelius, F. H. (Eds.) (2017).  Ethical Health Informatics:  Challenges and Opportunities, 3rd ed.  

Burlington, MA:  Jones & Bartlett Learning.Authors – many professions, many different degrees

Baur, C. & Deering, M. J. Digital health technologies for consumers, patients and caregivers, chapter 21.

Czirr, K. & West, E. Information security, chapter 13.

Flite, C.A. & Johns, M. L. Management and Leadership, chapter 22.

Hanken, M. A. & Murphy, G. Electronic health records, chapter 12.

Harman, L. B., Mullen, V. L. & Cornelius, F. H. Professional values and the code of ethics, chapter 1.

Glover, J.J. Ethical decision-making guidelines and tools, chapter 2.

Holtzman, L. & Holtzman. Coding, chapter 5.

Helbig, S. Advocacy, chapter 25.

Jones, M. L. Adoption information, chapter 19.

Rinehart-Thompson, L. A. & Harman, L.B. Privacy and confidentiality, chapter 3.

Rinehart-Thompson, L. A. Compliance, fraud, and abuse, chapter 5.

Rinehart-Thompson, L. A. & Randolph, S. J. Substance abuse, behavioral health and sexual information, chapter 20.

Mandi, D, Silverman, M.A., Tischler, J. F. & Golden, A. G. Clinical care: End-of-life, chapter 11.

Neuberger, B. J. & Swirsky, E. S. Public health and informatics, chapter 9.

Olson, B & Grant, K. G. Integrated delivery systems, chapter 16.

Spath, P. L. & Leonard, F. B. Quality management, chapter 7.

Terry, S. F. Genetic information, chapter 18.

AHIMA CODES OF ETHICS

www\ahima.org

•AHIMA Code of Ethics (2011)

•AHIMA Standards of Ethical Coding (2016)

•AHIMA Ethical Standards for Clinical Documentation Improvement (CDI) Professionals (2016)

MEDICAL IDENTITY THEFT

Rinehart‐Thompson, Privacy and confidentiality, chapter 3, pp. 84‐85

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CONTACT INFORMATION

Laurinda B. Harman, PhD, RHIA, FAHIMA

lharman@temple.eduCell: 215-429-7830Office: 215-283-2596Fax: 215-542-7400

THANK YOU!

QUESTIONS?

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Notes