7

Module

Self-Study Modules on Tuberculosis

Patient Rights and 

Confidentiality in 

Tuberculosis Control

National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention 

Division of Tuberculosis Elimination

Patient Rights and 

Confidentiality in 

Tuberculosis Control

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES

Centers for Disease Control and Prevention

National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention

Division of Tuberculosis Elimination

Atlanta, Georgia

2014

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Contents

Background . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1

Objectives . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1

New Terms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2

Introduction to Patient Rights and Confidentiality . . . . . . . . . 4

The Patient-Health Care Worker Relationship . . . . . . . . . . . . . . 6

Patient Rights . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10

TB Control and Confidentiality . . . . . . . . . . . . . . . . . . . . . . . . . . . 15

Measures to Protect Patient Confidentiality 

and Ensure Data Security . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23

Additional Resources . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 29

Answers to Study Questions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30

Case Study Answers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 34

Module 7—Patient Rights and Confidentiality in Tuberculosis Control 

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Background

This module discusses patient rights and general recommendations for developing trust and 

maintaining confidentiality in the context of TB control.

Health care workers need to be aware of the importance of confidentiality issues involving 

patient-health care worker encounters, as well as to the collection, management, and sharing of 

TB patient data and information. In the treatment of TB disease and latent TB infection (LTBI), 

the relationship between the patient and the health care worker is extremely important. If patient 

information is disclosed to unauthorized persons without the patient’s permission, the patient 

may be stigmatized or experience rejection from family and friends, lose a job, or be evicted 

from housing. Moreover, the health care worker may lose the trust of the patient. Therefore, 

confidentiality—the protection of a patient’s private information—is critical in TB control. By 

using the recommendations in this module, you should be able to protect the patient’s rights 

and their confidentiality and help the TB program fulfill its responsibilities to the public.

Objectives

After working through this module, 

you will be able to 

1. Define confidentiality.

2. Explain why trust is important to a 

successful patient-health care worker 

relationship.

3. List four types of patient’s rights.

4. Describe how confidentiality is an 

essential issue in several of the 

core components of a TB control 

program.

define

explain

describe

list

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Module 7— Patient Rights and Confidentiality in Tuberculosis Control 

New Terms

New terms introduced in this module are included below. Please refer to the Self-Study Modules 1–5 

Glossary if you encounter unfamiliar terms related to TB that are not defined in the glossary below.

authorization—permission given by the 

patient to allow a third party to have access to 

the patient’s confidential information

autonomy—the right of a patient to determine 

what will be done with his or her body, 

personal belongings, and personal information; 

this concept applies to any adult person who is 

mentally competent

confidentiality—the protection of all patient 

information, including patient records and 

information discussed or identified during 

patient-health care worker encounters 

court order—an order issued by a court 

mandating an action such as compliance with 

directly observed therapy (DOT) or, in very 

rare cases, detention in a facility until treatment 

is completed

data security—protection of public health 

data and information systems to prevent 

unauthorized release of identifying information 

and accidental loss of data or damage to the 

systems. Security measures include measures to 

detect, document, and counter threats to data 

confidentiality or the integrity of data systems. 

disclosure—the act of revealing or 

distributing personal information 

Health Insurance Portability and 

Accountability Act (HIPAA) Privacy 

Rule—provides national standards for 

protecting the privacy of health information. 

The Privacy Rule regulates how organizations 

and health care workers use and disclose 

certain individually identifiable health 

information.

2
passive case reporting—the required 

reporting of suspected or confirmed TB 

cases to a public health authority

patient-identifiable information—

information in which the identity of the patient 

is directly included or can be deduced

privileged information—personal information 

shared by the patient with a health care worker

protected health information 

(PHI)—individually identifiable health 

information that is transmitted or maintained 

in a database; this can be electronic media 

or any other form or medium. The protected 

information must relate to 1) the past, present, 

or future physical or mental health condition of 

an individual; 2) provision of health care to an 

individual; or 3) payment for the provision of 

health care to an individual. If the information 

identifies or provides a reasonable basis to 

believe it can be used to identify an individual, 

it is considered individually identifiable health 

information.

statement of disagreement—a statement 

filed by the patient stating there is a 

disagreement with the health care worker or 

institution regarding the patient’s record

TB health care worker—any person who 

cares for and manages TB patients, including 

physicians, nurses, case managers, outreach 

workers, hospital discharge planners, 

pharmacists, social workers, peer educators, 

and volunteers 

third party—a person or an organization not 

directly involved in the patient’s care

waiver—a form that patients are often asked 

to sign to allow their health information to be 

used by third parties

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Introduction to Patient Rights and 

Confidentiality

Patient rights refer to certain basic rules of conduct between 

patients and any health care worker involved with the medical 

evaluation, treatment, or management of the patient. These rights 

need to be observed by all TB health care workers who are 

responsible for evaluating patients for TB infection or disease, 

treating and caring for any patient with latent TB infection (LTBI) 

or TB disease, and those health care workers involved in any 

other public health aspect of TB control. 

There are three specific issues related to patient rights of which 

TB health care workers need to be aware: 

 Patients have certain rights that are protected by law and 

must be respected;

 Patient confidentiality must be protected to maintain trust 

and preserve the patient-health care worker relationship; and

 Patient rights may sometimes be overridden to protect the 

public’s health.

Many patient rights are protected by law to ensure that 

patients are treated with dignity and respect, and that they are 

empowered to be in charge of their own health. TB health care 

workers must respect these rights to ensure a successful patienthealth care worker relationship. In the treatment of TB disease 

and LTBI, the relationship between the patient and the health 

care worker is extremely important. 

Maintaining confidentiality is a key component of this 

relationship. Confidentiality refers to the protection of all patient 

information, including patient records and information discussed 

or identified during patient-health care worker encounters. 

Although it is important to protect every patient’s rights, there 

are times that health departments must also consider the 

interests of the public’s health. Since health departments have a 

responsibility to protect the health of the public, some patient 

rights may need to be overridden to carry out TB control 

activities. For example, if a patient does not cooperate with the 

health care worker in completing treatment, the patient may 

need to continue treatment under a court order or be confined 

for the duration of treatment. 

TB health care workers 

must respect patient rights 

to ensure a successful 

patient-health care 

worker relationship.

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Study Questions 7.1–7

7.1 What is confidentiality?

7.2 List three issues related to confidentiality and patient rights that health care 

workers need to be aware of. 

Answers to study questions are on pages 30– 33

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The Patient-Health Care Worker 

Relationship

Who is Considered a TB Health Care Worker?

A TB health care worker is any person who cares for and 

manages a TB patient, including

 Physicians

 Pharmacists

 Nurses

 Social workers

 Case managers

 Peer educators

 Outreach workers

 Volunteers

 Hospital discharge planners

For TB patients, health care workers may include individuals 

from both public and private sectors. However, because the 

health department has ultimate responsibility for the TB cases in 

its jurisdiction, the health department should provide oversight 

of the management of all TB cases, including those seen in the 

private sector. 

Health care workers from the public sector may find that 

health care workers from the private sector are reluctant to 

share patient information. Health care workers from the public 

sector must be prepared to inform health care workers from 

the private sector about health department confidentiality 

policies and procedures regarding the collection, management, 

and sharing of data gathered on TB patients. Health care 

workers in the public sector should emphasize that because 

TB is considered a significant threat to the public’s health, the 

disclosure of patient information from the private health care 

worker to a designated public health authority without the 

patient’s permission or authorization is allowed for the purpose 

of TB control. For example, the Health Insurance Portability 

and Accountability Act (HIPAA) Privacy Rule and most 

other medical data privacy laws allow disclosure of identifiable 

data from health care workers, data clearinghouses, and 

insurers to public health authorities without individual written 

authorization.

A TB health care worker is 

any person who cares for 

and manages a TB patient.

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What is the Patient-Health Care Worker Relationship?

The patient-health care worker relationship is the basis for 

 Sharing information

 Communicating beliefs and feelings that affect patient care

 Building trust between the patient and the health care worker

The patient-health care worker relationship can be viewed as 

an agreement between the patient and the health care worker. 

This agreement includes basic rules that both the patient and 

the health care worker will observe during the course of their 

relationship, such as respecting each other’s rights and upholding 

responsibilities. If either person fails to keep their agreement, 

misunderstandings, a lapse in communication, or treatment failure 

can occur. 

The Importance of Trust in the Patient-Health Care 

Worker Relationship

The quality of the patient-health care worker relationship is 

especially important in TB control, because long-term adherence 

to treatment is necessary. A strong patient-health care worker 

relationship is built on trust and the protection of confidentiality. 

Trust means that the patient believes in the integrity, ability, and 

character of the health care worker. If there is trust between a 

patient and his or her health care worker, the patient may be 

more likely to adhere to treatment, name contacts, and follow the 

health care worker’s instructions and advice. Therefore, health 

care workers should strive to gain a patient’s trust by 

 Maintaining confidentiality

 Providing complete and accurate information

 Respecting the patient’s autonomy

Once developed, it is important to maintain trust. The patient may 

share personal information about lifestyle choices and risky, even 

potentially illegal behaviors, such as substance use. It is important 

that the health care worker assures the patient that personal 

information such as this will not be shared with authorities. 

If personal information is revealed to others without the patient’s 

permission, the patient’s trust in the health care worker could be 

threatened and may result in serious consequences, such as the 

 Patient-health care worker relationship may be damaged

 Health care worker may lose the trust of other patients and/

or the community

 Patient may be stigmatized

A strong patienthealth care worker 

relationship is built on 

trust and the protection 

of confidentiality.

If personal information is 

revealed to others without 

the patient’s permission, 

the patient’s trust in the 

health care worker could be 

threatened and may result 

in serious consequences.

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Study Questions 7.3–7

7.3 What does the patient-health care worker relationship serve as the basis for?

7.4 List three ways health care workers can develop trust with a patient.

7.5 Why is trust important to a successful patient-health care worker relationship?

Answers to study questions are on pages 30– 33

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Case Study 7.

Van is a cook at a local restaurant. He came to the health department after his girlfriend, 

Tanya, told him that she had been diagnosed with TB disease. After undergoing a complete 

medical evaluation, it was confirmed that Van also has TB disease. 

Van is not from the United States and does not have the proper documents to be working in 

this country. During an interview with his health care worker, Van was reluctant to provide 

information on where he worked. He does not want to get his employer in trouble nor does 

he want to be reported to immigration authorities. Van was also afraid that if people at work 

found out that he had TB, he would lose his job. Finally, Van also admitted to injecting drugs 

with some friends occasionally, but was reluctant to give their names because he didn’t want his 

friends to know that he had TB. He was also afraid his friends might be reported to the police. 

Why is it important to protect Van’s personal information? 

What can the health care worker do to develop trust with Van? 

Answers to case studies are on pages 34– 36

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Patient Rights

Patients have certain rights concerning their personal 

information relevant to their medical care. These rights 

are explained below and summarized in Table 7.1.

 Give or withhold authorization of disclosures 

 Maintain privacy

 Have autonomy

 Be given information

The Right to Give or Withhold Authorization of 

Disclosures

Disclosure is the act of revealing or distributing personal 

information. Patients have the right to give or withhold 

authorization of disclosures. This means that the patient should 

have control over

 Who will receive his or her personal information 

 What information should be released 

 How long the authorization of disclosure will last

A patient discloses personal information to a health care worker 

so that he or she can receive appropriate treatment and care. 

Health care workers are allowed to share patient information 

with others directly involved in the management of the patient 

to provide quality care. For example, an outreach worker 

can discuss a patient’s medication side effects with the clinic 

physician.

Sometimes health care workers are asked by a third party

to disclose patient information. A third party is a person or 

organization not directly involved in the patient’s care (e.g., 

media or workplace). In these situations, health care workers 

are not allowed to disclose patient information. The patient 

needs to give specific authorization to allow a third party access 

to their confidential information. TB programs and health care 

workers should carefully consider if requests from third parties 

are legitimate before asking patients to authorize disclosures. 

To give authorization, patients are often asked to sign a waiver

or a permission form. These documents should be carefully 

explained to patients. The patient has a right to refuse requests 

Disclosure is the act of 

revealing or distributing 

personal information.

The patient needs to give 

specific authorization to 

allow a third party access 

to their confidential 

information.

Module 7—Patient Rights and Confidentiality in Tuberculosis Control

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by third parties, as well as the right to limit the authorization 

in any way he or she wishes, except where disclosure is 

provided by law. A public health authority can disclose personal 

information if there is an overriding public health need.

Patient authorization is NOT needed for passive case 

reporting. Passive case reporting is the required reporting of 

suspected or confirmed TB cases to a public health authority. 

The Right to Maintain Privacy

Health care workers should protect information revealed during 

patient-health care worker encounters, including all written 

or electronic records of these encounters. Only those persons 

directly involved in the care of the patient should have access 

to private information. Health care workers need to be aware of 

the patient’s right to privacy in the collection, management, and 

sharing of information and data. Personal information shared 

by the patient with his or her health care worker is considered 

privileged information and should be protected. This 

information is usually entered into the patient’s medical record 

and into any secondary databases that are maintained by the 

health care worker or institution where the patient receives care. 

Secondary databases are usually maintained for the purposes of

 Sharing information among members of the health care 

team

 Conducting reporting and surveillance of diseases or 

medical conditions

 Financing health care through reimbursements from the 

government or a private organization (e.g., an insurance 

company)

 Conducting institutional review of the quality of care and 

appropriateness of expenditures

When the patient’s identity is either directly included in 

or can be deduced from such information, it is sometimes 

referred to as patient-identifiable information. 

The Right to Have Autonomy

Autonomy is the right of a patient to determine control over 

his or her body, personal belongings, and personal information. 

The concept of autonomy applies to any adult person who is 

mentally competent. The right to autonomy has some limitations 

designed to protect the patient. For example, if the patient is a 

child or a mentally incompetent adult, a parent or legal guardian 

typically acts as the decision maker. 

Personal information 

shared by the patient 

with his or her health 

care worker is considered 

privileged information 

and should be protected.

Autonomy is the right of 

a patient to determine 

control over his or her body, 

personal belongings, and 

personal information.

Module 7—Patient Rights and Confidentiality in Tuberculosis Control 

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Sometimes the right to autonomy can be overridden in the 

interest of protecting others who may be harmed by the 

patient’s decisions. This can happen in TB control when a 

patient with infectious TB disease refuses treatment. Because the 

patient poses a significant health risk to the public, he or she 

may receive a court order which mandates directly observed 

therapy (DOT) or, in rare cases, detention in a facility until 

treatment is completed. (For more information on legal remedies 

to nonadherence, refer to Module 6, Managing Tuberculosis 

Patients and Improving Adherence.) Health departments should 

contact their legal counsel for guidance on this process.

With the exception of the situations mentioned above, 

autonomy means that health care workers should respect patient 

decisions about their health care.

The Right to Be Given Information

The patient has a right to be given information about his or her 

medical diagnosis, treatment regimen, and progress. This allows 

the patient to make informed decisions about his or her health 

care. For example, a patient with TB disease has a right to 

know the treatment options available, the duration of treatment, 

potential side effects of the drugs, and the expected outcome. 

This information may be valuable to the patient not only for 

making health care decisions, but also for making decisions 

about other important issues such as housing or family matters.

The patient also has a right to review the information in his or 

her medical record. The patient may want this information to 

learn more about his or her health care or in preparation for 

a change of health care workers. If the record contains errors 

or omissions, the patient can request a correction. Usually, 

this request must be approved by the health care worker or 

institution that maintains the record. If the health care worker or 

institution does not agree that the record should be corrected, 

the patient can usually file a statement of disagreement. The 

documentation of a patient’s medical history is very important 

and can affect current and future medical decisions for the 

patient. Therefore, it is important that it be as accurate and 

objective as possible when documenting patient information.

The patient has a right 

to be given information 

about his or her medical 

diagnosis, treatment 

regimen, and progress.

The patient also has a right 

to review the information 

in his or her medical record.

Sometimes the right 

to autonomy can be 

overridden in the interest 

of protecting others who 

may be harmed by the 

patient’s decisions.

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Table 7.1 Summary of Patient Rights

Type of Patient Right Description

The right to give or withhold 

authorization of disclosures

The patient generally has the right to control who has access to 

confidential information except as required by law. The patient needs 

to give specific authorization to allow a third party to have access to 

confidential information. However, a public health authority can disclose 

personal information if there is an overriding public health need.

The right to maintain privacy

Only persons directly involved in the care of the patient should have 

access to private information. Health care workers should protect all 

patient information.

The right to have autonomy

Autonomy is the right of a patient to determine control over his or her 

body, personal belongings, and personal information; this concept 

applies to any adult person who is mentally competent. Sometimes the 

right to autonomy can be overridden in the interest of protecting others 

who may be harmed by the patient’s decisions.

The right to be given information

The patient has a right to information about his or her medical diagnosis, 

treatment regimen, and progress. This allows the patient to make 

informed decisions about his or her health care.

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Study Questions 7.6–7

7.6 List four types of patient’s rights.

7.7 What is an authorization form or waiver and when is it used?

7.8 What is patient-identifiable information?

Answers to study questions are on pages 30– 33 

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TB Control and Confidentiality

Confidentiality is essential in many aspects of TB control, 

including patient-health care worker encounters, as well as the 

collection, management, and sharing of TB patient data and 

information. It is the responsibility of health care workers to 

protect patient information and to make sure that only persons 

directly involved in patient care or public health activities have 

access to patient information. If patient information is disclosed 

to unauthorized persons without the patient’s permission, the 

patient may be stigmatized or experience rejection from family, 

friends, and others. Great care must be taken to ensure that 

patients’ rights to privacy are protected to the fullest extent 

possible such that the patient-health care worker relationship 

is not compromised. Additionally, it is important for health care 

workers to maintain confidentiality and have a good relationship 

with patients to ensure they do not lose the trust of the 

community as a whole. This is particularly important in small, 

close-knit communities.

Multiple laws and regulations exist to protect data security 

and confidentiality. For example, the Health Insurance 

Portability and Accountability Act (HIPAA) Privacy Rule

generally prohibits the use or disclosure of protected health 

information (PHI) without written authorization from the 

patient. There are several exceptions to this requirement, 

including an exception for public health. PHI can be disclosed 

to public health authorities for public health purposes including, 

but not limited to, public health surveillance, investigations, and 

interventions. Additionally, each state may have its own laws 

regarding security and confidentiality of patient information. 

Health care workers should become familiar with the 

confidentiality laws in their jurisdiction.

Confidentiality must be preserved in the following TB control 

activities:

 Ensuring adequate patient care 

 Performing contact investigations

 Collecting and analyzing data 

 Conducting program evaluation 

 Referring patients to other jurisdictions

It is the responsibility 

of health care workers 

to protect patient 

information.

Health care workers 

should become familiar 

with the confidentiality 

laws in their jurisdiction.

Module 7—Patient Rights and Confidentiality in Tuberculosis Control 

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Ensuring Adequate Patient Care

The most effective strategy to ensure patients adhere to TB 

treatment is directly observed therapy (DOT). This method of 

treatment involves frequent meetings between the patient and 

the health care worker. These meetings take place at locations 

that are convenient for the patient. Health care workers should 

make sure that the patient’s confidentiality is protected during 

these encounters. This means that

 The location should allow for privacy

 Other persons should not be present without the patient’s 

permission

Occasionally, a TB patient may decide not to cooperate with the 

health care worker in completing treatment. When this happens, 

the health care worker has a responsibility to 

 Review the potential causes of the patient’s nonadherence

 Identify potential solutions

 Meet the patient’s needs to assist completion of therapy

If these measures fail, the patient may be required to continue 

treatment under a court order or be isolated until noninfectious. 

Although disclosure of patient information is necessary to obtain 

a court order or an order for confinement, such disclosure 

should be limited to the appropriate authorities who need 

the information. Any health department or law enforcement 

officials who become involved should take care to protect the 

patient’s right to privacy. A breach of confidentiality in these 

circumstances can undermine the patient-health care worker 

relationship and lead to continued problems with adherence. 

(For more information about addressing nonadherence, refer 

to Module 6, Managing Tuberculosis Patients and Improving 

Adherence.)

A TB patient may 

decide not to cooperate 

with the health care 

worker in completing 

an adequate regimen. 

When this happens, the 

health care worker has a 

responsibility to review 

the causes of the patient’s 

nonadherence, identify 

potential solutions, and try 

to meet the patient’s needs 

to the extent possible.

Module 7—Patient Rights and Confidentiality in Tuberculosis Control 

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Performing Contact Investigations

When a case of infectious TB disease is reported, a contact 

investigation should be conducted to identify persons who 

may have been in contact with that person and to assess those 

persons for TB infection and TB disease. (For more information 

about TB contact investigations, refer to Module 8, Contact 

Investigations for Tuberculosis.) 

To conduct a contact investigation, health care workers 

interview the patient to get information about where the patient 

spent time and who they spent time with while infectious. 

The health care worker should ensure that interviews 

with the patient take place in private. Health care workers 

should emphasize confidentiality, yet inform the patient that 

relevant information may need to be shared with other health 

department staff who have a need to know. Additionally, if the 

patient spent time in a congregate setting (e.g., a school or 

shelter) while infectious, the health care worker should inform 

the patient that an appropriate site manager (e.g., school 

principal or supervisor) may need to be notified such that they 

can assist in accurately and efficiently identifying contacts who 

need to be evaluated. If the patient’s identity is revealed to a 

site manager, the health department should obtain a signed 

confidentiality agreement from the site manager.

The health care worker should be careful not to inadvertently 

reveal clues about the TB patient’s identity while meeting with 

the patient’s contacts. Confidentiality should not be violated 

even if contacts refuse to be evaluated. The following 

strategies can be used to protect the confidentiality of the 

patient when meeting with contacts:

 Use gender-neutral language. For example, “Someone you 

have spent time with was diagnosed with TB and they 

were concerned about you” instead of “A woman you 

have spent time with was diagnosed with TB and she was 

concerned about you.”

 Do not mention the patient’s health care worker, place and 

dates of diagnosis, or hospitalization history. 

 Do not mention the environment in which the exposure 

occurred. For example, “You have been around someone 

who has TB” instead of “You have been around someone at 

work who has TB.”

 Do not confirm the name of the patient if the contact 

correctly guesses his or her identity. 

Confidentiality should not 

be violated even if contacts 

refuse to be evaluated.

Module 7—Patient Rights and Confidentiality in Tuberculosis Control 

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Patients should be informed that sometimes despite best efforts, 

their TB status may be inadvertently disclosed to others. For 

example, a friend, family member, or co-worker of the patient 

may share information about the patient to others. The patient 

and the health care worker should discuss this possibility and 

be prepared to address the situation in the event that privacy is 

not maintained. To prevent breaches in confidentiality, patients 

should be advised to inform only persons they trust about their 

TB diagnosis.

Collecting and Analyzing Data

An important part of confidentiality is data security. Data 

security is the protection of public health data and information 

systems to prevent unauthorized release of identifying 

information and accidental loss of data or damage to the 

systems. Security measures include measures to detect, 

document, and counter threats to data confidentiality or the 

integrity of data systems.

All 50 states and the District of Columbia mandate that 

physicians and other health care providers report newly 

diagnosed cases of TB to the state health department. State 

health departments report this TB surveillance data to CDC 

under an agreement between the CDC and the Council of State 

and Territorial Epidemiologists (CSTE). 

The disclosure of patient information to a designated public 

health authority is allowed without written authorization from 

the patient because TB is considered a significant threat to 

public health. Health departments are required to comply 

with privacy laws intended to keep TB patient information 

confidential.

Security and confidentiality is particularly important when 

collecting and analyzing data with identifiable (e.g., names and 

addresses) and potentially identifiable (e.g., dates of birth, lab 

report dates, immigration status, county, or age greater than 

89) patient information. TB control programs should develop 

specific policies to ensure the security and confidentiality of 

TB records. For example, policies and procedures should be 

in place to protect all TB reports, records, and files containing 

patient names or other identifying information. Data security and 

confidentiality guidelines were developed by the CDC National 

Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention in 

2011 as a reference for states implementing data confidentiality 

policies. These guidelines are available at www.cdc.gov/nchhstp/

programintegration/docs/PCSIDataSecurityGuidelines.pdf. Staff 

Data security is the 

protection of public health 

data and information 

systems to prevent 

unauthorized release of 

identifying information 

and accidental loss of data 

or damage to the systems. 

Policies and procedures 

should be in place to 

protect all TB reports, 

records, and files 

containing patient names 

or other identifying 

information.

Patients should be 

informed that despite 

best efforts, sometimes 

confidentiality is 

not preserved.

Module 7—Patient Rights and Confidentiality in Tuberculosis Control 

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members should have a clear understanding of these and 

other existing state and local data security and confidentiality 

requirements. 

National Electronic Disease Surveillance System (NEDSS)-

compliant systems such as the NEDSS Base System (NBS) 

Tuberculosis Program Area Module (TB PAM) or the Electronic 

Report of Verified Case of Tuberculosis (eRVCT) should be 

used to maintain the security and confidentiality of data. These 

surveillance systems encrypt protected information during 

transfers of data to CDC for national surveillance purposes. 

Although these systems allow for the collection and storage 

of personal identifiers such as names and street addresses 

for local and state TB surveillance purposes, these identifiers 

are not transmitted to CDC. These precautions help to limit 

unauthorized access to surveillance information.

Because HIV/AIDS can have serious implications for TB 

care and treatment, some health jurisdictions have additional 

confidentiality rules and regulations for the sharing of 

information between TB and HIV/AIDS programs. AIDS is a 

reportable disease in every state. The requirements for reporting 

HIV infection differ from state to state, and health care workers 

should be familiar with local reporting requirements. For clinical 

care purposes, HIV-related information should be shared 

between TB health care workers and other health care workers 

in accordance with state and local laws.

TB programs often collaborate with HIV/AIDS programs to 

conduct annual TB and HIV/AIDS registry matches to ensure 

completeness of reporting for HIV and TB coinfected patients. 

These TB programs should adhere to the same confidentiality 

standards as HIV/AIDS surveillance programs and should work 

with local HIV/AIDS programs to establish equivalent data 

security and confidentiality policies. 

Conducting Program Evaluation

Program evaluation reports serve as a basis for policy and 

program development and are often shared with appropriate 

public, private, and community groups. TB programs collect 

and analyze

 Morbidity rates

 Trends

 Demographic characteristics of TB patients in the area

For clinical care purposes, 

HIV-related information 

should be shared between 

TB health care workers 

and other health care 

workers in accordance 

with state and local laws.

Module 7—Patient Rights and Confidentiality in Tuberculosis Control 

19
Evaluation reports also assess program performance by 

determining the rates for

 Completion of therapy 

 Contact identification

 Initiation and completion of treatment for LTBI

Program evaluation reports should never include patientidentifiable information, such as names, addresses, or detailed 

demographic information that could be used to identify the 

patient.

Referring Patients to Other Jurisdictions

If a patient travels or moves from one health jurisdiction to 

another, the health department of the patient’s home jurisdiction 

should notify the health department for the area to which the 

patient is moving. It is important that information is given to the 

receiving jurisdiction, to ensure the patient continues their TB 

care and treatment. Health care workers should be aware that 

confidentiality and security laws and procedures may vary from 

state to state. (For more information about interjurisdictional 

referrals, refer to Module 6, Managing Tuberculosis Patients and 

Improving Adherence.)

Although sharing information between health care workers, 

health departments, and health jurisdictions is encouraged to 

protect the health of the patient and the public, information 

should be shared only on a need-to-know basis. Confidential 

information should be transferred via secure electronic 

methods, personal communication, or hard-copy mail delivery 

whenever possible. When sending information via mail, email, 

or fax, measures should be taken to ensure confidentiality. For 

example, any materials sent through the mail should be sent 

directly to a specific person and, if possible, with added security 

such as signature confirmation, restricted delivery, or certified 

mail. Health care workers should never fax patient information 

if they are unsure that the receiving fax machine is in a secure 

area. All information sent by fax or email should be sent to 

a specific person and labeled confidential. Never send any 

information with patient-identifiable information through email 

without encryption.

If a patient travels or 

moves from one health 

jurisdiction to another, 

the health department 

of the patient’s home 

jurisdiction should notify 

the health department 

for the area to which 

the patient is moving.

When sending information 

via mail, email, or fax, 

measures should be taken 

to ensure confidentiality.

Program evaluation 

reports should never 

include patientidentifiable information.

Module 7—Patient Rights and Confidentiality in Tuberculosis Control 

20
Study Questions 7.9– 7.

7.9 List two ways health care workers can protect patient confidentiality during DOT 

encounters.

7.10 List four strategies health care workers can use to protect patient confidentiality 

when conducting contact investigations.

7.11 Why is disclosure of patient information allowed for routine case reporting?

7.12 How can health care workers ensure security and confidentiality when referring 

patients to other jurisdictions?

Answers to study questions are on pages 30– 33

Module 7—Patient Rights and Confidentiality in Tuberculosis Control 

21
Case Study 7.

Miranda is a high school student who was recently diagnosed with infectious TB disease. 

During an interview with her health care worker, she reported that she rides the bus to school 

every day and participates in a few extracurricular activities. Miranda was reluctant to provide 

additional information about her contacts because she did not want anyone at school to know 

she has TB. 

How should the health care worker respond to Miranda’s concerns about confidentiality? 

One of Miranda’s classmates refuses to be evaluated without knowing the identity 

of the person who may have infected them. What should the health care worker do 

in this situation?

Answers to case studies are on pages 34– 36

Module 7—Patient Rights and Confidentiality in Tuberculosis Control 

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Measures to Protect Patient 

Confidentiality and Ensure 

Data Security

Measures to Protect Patient Confidentiality 

Health care workers should take the following measures to 

protect patient confidentiality when meeting with a patient

 Confirm the patient’s identity at the first encounter

 Conduct patient interviews in private (Figure 7.1)

 Ensure interpreters understand the importance of 

confidentiality

After meeting a patient, health care workers should 

 Never discuss the patient’s case with anyone without the 

patient’s permission (unless there is a public health need)

 Never discuss cases or use patient names in a public area

 Use only secure routes to send patient information and 

always mark as confidential

Figure 7.1 Conducting patient interviews in privacy.

Module 7—Patient Rights and Confidentiality in Tuberculosis Control 

23
Ensuring Data Security and Confidentiality in an 

Office, Clinic, or Institution

Data security is also an important aspect of confidentiality. 

Care should be taken to ensure the safeguarding of patient 

information in an office, clinic, or institution.

 If a staff member or health care worker requests patient 

information, establish his or her authority to do so before 

disclosing anything.

 Keep records that contain patient names and other 

identifying information in closed, locked files (Figure 

7.2). Never leave hard copies of forms or records where 

unauthorized persons may access them.

 Restrict access to electronic databases to designated staff.

 Carefully protect computer passwords; never give them to 

unauthorized persons.

 Keep computers in a locked or restricted area; password 

protect computers.

 Keep printouts of electronic information in a restricted or 

locked area; printouts that are no longer needed should be 

shredded.

Figure 7.2 Closed, locked files.

Module 7—Patient Rights and Confidentiality in Tuberculosis Control 

24
Health care workers have a responsibility to protect patient 

records from unauthorized access. Information that should be 

kept in locked files except when being processed by authorized 

staff include:

 Medical records

 Report of Verified Case of Tuberculosis (RVCT) forms

 Communicable disease report cards

 Other records that contain patient names and other 

identifying information

No papers should be exposed when workers are away from 

the work area, even for brief periods. Access to all RVCT forms, 

communicable disease report cards, and the files containing this 

information should be restricted to designated TB program staff 

who are directly involved with surveillance or case work and 

who have a need to know. Access to such databases should be 

protected by a combination of user IDs and passwords. User 

IDs should be issued only to staff who require access to the 

database to perform their official duties. 

Protecting Confidentiality in the Field

When conducting field visits, health care workers may need 

to ask for patients by name or ask about a patient’s work 

location and habits. This should be done as discreetly as 

possible. For example, a health care worker could ask for a 

patient by name but should not explain that they are from the 

TB Program.

In the field, there are important measures that can be taken to 

protect patient confidentiality:

 Conduct patient interviews in private; never discuss the case 

in a public place.

 Do not leave confidential information in messages for the 

patient on a door.

 Do not leave confidential information on an answering 

machine.

 Do not leave confidential information with a neighbor or friend.

 Do not disclose the patient’s condition when gathering 

information on his or her whereabouts.

In the field, there are 

important measures that 

can be taken to protect 

patient confidentiality.

Health care workers have 

a responsibility to protect 

patient records from 

unauthorized access.

Module 7—Patient Rights and Confidentiality in Tuberculosis Control 

25
Study Questions 7.13– 7.

7.13 List three general measures to protect patient confidentiality.

7.14 List four ways to ensure data security in the office, clinic, or institution.

7.15 List four measures health care workers can take to protect confidentiality while 

working in the field.

Answers to study questions are on pages 30– 33

Module 7—Patient Rights and Confidentiality in Tuberculosis Control 

26
Case Study 7.

Rolando is a health care worker at a TB clinic. It is the end of a very busy Friday afternoon. He 

is trying to wrap things up and go home after his extremely stressful week. He is going through 

the patient-related forms he has been working on that day. He is on his way to put the forms 

in the file cabinet when he is interrupted by a phone call from his babysitter. His babysitter 

explains that she has to leave early that day. Thinking it is an emergency, Rolando hastily 

hands over the files to his co-worker Sam in the clinic area. He asks Sam to put the files on his 

desk. Before getting a reply from Sam, he leaves. Sam was not very happy because he was also 

just about to leave. He ends up leaving the files on the table in the clinic, an area where other 

patients may see the files.

What measures should Rolando have taken to ensure security and confidentiality? 

Answers to case studies are on pages 34– 36

Module 7—Patient Rights and Confidentiality in Tuberculosis Control 

27
Case Study 7.

Janice is an outreach worker at a TB clinic. She has been trying to contact her patient Jerry 

for several days. She has visited his home several times and tried to call him. One time when 

she visits Jerry’s house, she sees Jerry’s neighbor. The neighbor tells Janice that Jerry just left. 

Janice introduces herself to Jerry’s neighbor and explains that she is from the TB clinic in the 

health department and is looking for Jerry. She tells the neighbor that if she sees Jerry, please 

tell him that she has stopped by to see him. Finally, she leaves a message for Jerry on the front 

door of his house. She does not have any envelopes for her letter, but decides Jerry must really 

get her message and so she tapes it to his door. 

Did Janice do anything that possibly threatens Jerry’s confidentiality? 

What measures should Janice have taken to protect Jerry’s confidentiality? 

Answers to case studies are on pages 34– 36

Module 7—Patient Rights and Confidentiality in Tuberculosis Control 

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Additional Resources

1. CDC. Data Security and Confidentiality Guidelines for HIV, 

Viral Hepatitis, Sexually Transmitted Disease, and Tuberculosis 

Programs: Standards to Facilitate Sharing and Use of Surveillance 

Data for Public Health Action. Atlanta, GA: Department of 

Health and Human Services, CDC: 2011. www.cdc.gov/nchhstp/

programintegration/docs/PCSIDataSecurityGuidelines.pdf. 

2. CDC. Frequently Asked Questions About HIPAA Privacy Rule: 

Provisions Relevant to Public Health Practice. Atlanta, GA: 

Department of Health and Human Services, CDC; 2013. 

www.cdc.gov/nhsn/faqs/FAQ_HIPPArules.html. 

3. CDC. HIPAA Privacy Rule and Public Health: Guidance from CDC 

and the U.S. Department of Health and Human Services. MMWR 

2003; 52 (S-1): 1–12. 

www.cdc.gov/mmwr/preview/mmwrhtml/su5201a1.htm. 

4. CDC. Privacy Legislation and Regulations. Atlanta, GA: Department 

of Health and Human Services, CDC; 2010. 

www.cdc.gov/od/science/integrity/privacy. 

5. CDC. Tuberculosis Control Laws—United States, 1993: 

recommendations of the Advisory Council for the Elimination of 

Tuberculosis (ACET). MMWR. 1993;42(RR-15):1–28.

http://www.cdc.gov/mmwr/preview/mmwrhtml/00030715.htm.

Module 7—Patient Rights and Confidentiality in Tuberculosis Control 

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Answers to Study Questions

7.1 What is confidentiality?

Confidentiality is the protection of all patient information, including patient records and 

information discussed or identified during patient-health care worker encounters. 

7.2 List three issues related to confidentiality and patient rights that health care 

workers need to be aware of. 

Three specific issues related to confidentiality and patient rights that health care workers 

need to be aware include 

 Patients have certain rights that are protected by law and must be respected;

 Patient confidentiality must be protected to maintain trust and preserve the patienthealth care worker relationship; and

 Patient rights may sometimes be overridden to protect the public’s health.

7.3 What does the patient-health care worker relationship serve as the basis for?

The patient-health care worker relationship is the basis for 

 Sharing information

 Communicating beliefs and feelings that affect patient care

 Building trust between the patient and the health care worker

7.4 List three ways health care workers can develop trust with a patient.

Health care workers should strive to gain a patient’s trust by 

 Maintaining confidentiality

 Providing complete and accurate information

 Respecting the patient’s autonomy

7.5 Why is trust important to a successful patient-health care worker relationship?

Trust means that the patient believes in the integrity, ability, and character of the health 

care worker. If there is trust between a patient and his or her health care worker, the 

patient may be more likely to adhere to treatment, name contacts, and follow the health 

care worker’s instructions and advice. Once developed, it is important to maintain trust. 

The patient may share personal information about lifestyle choices and risky, even 

potentially illegal behaviors, such as substance use. It is important that the health care 

worker assures the patient that personal information such as this will not be shared with 

authorities. 

Module 7—Patient Rights and Confidentiality in Tuberculosis Control 

30
Answers to Study Questions, Continued

If personal information is revealed to others without the patient’s permission, the 

patient’s trust in the health care worker could be threatened and may result in serious 

consequences, such as the: 

 Patient-health care worker relationship may be damaged

 Health care worker may lose the trust of other patients and/or the community

 Patient may be stigmatized

7.6 List four types of patient’s rights.

 The right to give or withhold authorization of disclosures

 The right to maintain privacy

 The right to have autonomy

 The right to be given information

7.7 What is an authorization form or waiver and when is it used?

An authorization form or waiver is a document that patients sign in order to allow a 

third party access to their confidential information. These documents should be carefully 

explained to patients. The patient has a right to refuse requests by third parties, as well as 

the right to limit the authorization in any way he or she wishes, except where disclosure 

is provided by law. TB programs and health care workers should carefully consider if 

requests from third parties are legitimate before asking patients to authorize disclosures. 

7.8 What is patient-identifiable information?

Patient-identifiable information is when the patient’s identity is either directly included or 

can be deduced from the information.

7.9 List two ways health care workers can protect patient confidentiality during DOT 

encounters.

Health care workers should make sure that the patient’s confidentiality is protected during 

DOT encounters. This means that

 The location should allow for privacy

 Other persons should not be present without the patient’s permission

Module 7—Patient Rights and Confidentiality in Tuberculosis Control 

31
Answers to Study Questions, Continued

7.10 List four strategies health care workers can use to protect patient confidentiality 

when conducting contact investigations.

The health care worker should ensure that contact investigation interviews with the 

patient take place in private. 

The health care worker should also be careful not to reveal identifying clues about the TB 

patient while meeting with the patient’s contacts. Confidentiality should not be violated 

even if contacts refuse to be evaluated. The following strategies can be used to protect the 

confidentiality of the patient when meeting with contacts:

 Use gender-neutral language. For example, “Someone you have spent time with was 

diagnosed with TB and they were concerned about you” instead of “A woman you 

have spent time with was diagnosed with TB and she was concerned about you.”

 Do not mention the patient’s health care worker, place and dates of diagnosis, or 

hospitalization. 

 Do not mention the environment in which the exposure occurred. For example, 

“You have spent time with someone who has TB” instead of “You have spent time 

with someone at work who has TB.”

 Do not confirm the name of the patient if the contact correctly guesses his or 

her identity. 

7.11 Why is disclosure of patient information allowed for routine case reporting?

The disclosure of patient information to a designated public health authority is allowed 

for routine case reporting without written authorization from the patient because TB 

is considered a significant threat to public health. Health departments are required to 

comply with privacy laws intended to keep TB patient information confidential.

7.12 How can health care workers protect patient confidentiality when referring patients to 

other jurisdictions?

Confidential information should be transferred via secure electronic methods, personal 

communication, or hard-copy mail delivery when possible. When sending information 

via mail, email, or fax, measures should be taken to ensure confidentiality. For example, 

any materials sent through the mail should be sent directly to a specific person and, 

if possible, with added security such as signature confirmation, restricted delivery, or 

certified mail. Health care workers should never fax patient information if they are unsure 

that the receiving fax machine is in a secure area. All information sent by fax or email 

should be sent to a specific person and labeled confidential. Never send any information 

with patient-identifiable information through email without encryption.

Module 7—Patient Rights and Confidentiality in Tuberculosis Control 

32
Answers to Study Questions, Continued

7.13 List three general measures to protect patient confidentiality.

Measures health care workers can take to protect patient confidentiality include:

 Confirm the patient’s identity at the first encounter.

 Conduct patient interviews in private.

 Ensure interpreters understand the importance of confidentiality.

 Never discuss the patient’s case with anyone without the patient’s permission.

 Never discuss cases or use patient names in a public area.

 Use only secure routes to send patient information and always mark as confidential.

7.14 List four ways to ensure data security in the office, clinic, or institution.

Health care workers can ensure data security by doing the following:

 If a staff member or health care worker requests patient information, establish his or 

her authority to do so before disclosing anything.

 Keep records that contain patient names and other identifying information in closed, 

locked files. Never leave hard copies of forms or records where unauthorized 

persons may access them.

 Restrict access to electronic databases to designated staff.

 Carefully protect computer passwords; never give them to unauthorized persons.

 Keep computers in a locked or restricted area; password protect computers.

 Keep printouts of electronic information in a restricted or locked area; printouts that 

are no longer needed should be shredded.

7.15 List four measures health care workers can take to protect confidentiality while 

working in the field.

In the field, there are important measures that can be taken to protect patient 

confidentiality:

 Conduct patient interviews in private; never discuss the case in a public place.

 Do not leave confidential information in messages for the patient on a door.

 Do not leave confidential information on an answering machine.

 Do not leave confidential information with a neighbor or friend.

 Do not disclose the patient’s condition when gathering information on his or her 

whereabouts.

Module 7—Patient Rights and Confidentiality in Tuberculosis Control 

33
Case Study Answers

7.1 Van is a cook at a local restaurant. He came to the health department after his 

girlfriend, Tanya, told him that she had been diagnosed with TB disease. After 

undergoing a complete medical evaluation, it was confirmed that Van also has 

TB disease.

Van is not from the United States and does not have the proper documents to be 

working in this country. During an interview with his health care worker Van was 

reluctant to provide information on where he worked. He did not want to get his 

employer in trouble and he does not want to be reported to immigration authorities. 

Van was also afraid that if people at work found out that he had TB, he would lose his 

job. Finally, Van also admitted to injecting drugs with some friends occasionally, but 

was reluctant to give their names because he didn’t want his friends to know that he 

had TB. He was also afraid his friends might be reported to the police. 

Why is it important to protect Van’s personal information? 

If personal information is revealed to others without Van’s permission, his trust in 

the health care worker could be threatened and may result in serious consequences, 

such as: 

 The patient-health care worker relationship may be damaged

 The health care worker may lose the trust of other patients 

and/or the community

 Van may be stigmatized

What can the health care worker do to develop trust with Van? 

The health care worker should strive to gain Van’s trust by: 

 Maintaining confidentiality

 Providing complete and accurate information

 Respecting Van’s autonomy

Once developed, it is important to maintain trust. The health care worker 

should assure Van that personal information, such as injecting drugs, will not 

be shared with authorities.

Module 7—Patient Rights and Confidentiality in Tuberculosis Control 

34
Case Study Answers, Continued

7.2 Miranda is a high school student who was recently diagnosed with infectious TB 

disease. During an interview with a health care worker, she reported that she rides 

the bus to school every day and participates in a few extracurricular activities. 

Miranda was reluctant to provide additional information on her contacts because she 

did not want anyone at school to know she has TB. 

How should the health care worker respond to Miranda’s concerns about 

confidentiality? 

The health care worker should tell Miranda that all of her personal 

information will be kept as confidential as possible. Since Miranda is 

in school, it may be necessary for the health care worker to inform an 

appropriate site manager (e.g., the school principal) such that they can assist 

in accurately and efficiently identifying contacts who need to be evaluated. 

The health care worker should tell Miranda that if this needs to happen, the 

health department will obtain a signed confidentiality agreement from the site 

manager.

The health care worker should tell Miranda that he or she will not reveal her 

name or any clues about her while meeting with contacts. 

One of Miranda’s classmates refuses to be evaluated without knowing the identity 

of the person who may have infected them. What should the health care worker 

do in this situation?

The health care worker should not violate Miranda’s confidentiality even if one 

of her contacts refuses to be evaluated. Additionally, the health care worker 

should not confirm Miranda’s name even if the contact correctly guesses her 

identity.

Module 7—Patient Rights and Confidentiality in Tuberculosis Control 

35
Case Study Answers, Continued

7.3 Rolando is a health care worker at a TB clinic. It is the end of a very busy Friday 

afternoon. He is trying to wrap things up and go home after his extremely stressful 

week. He is going through the patient-related forms he has been working on that day. 

He is on his way to put the forms in the file cabinet when he is interrupted by a phone 

call from his babysitter. His babysitter explains that she has to leave early that day. 

Thinking it is an emergency, Rolando hastily hands over the files to his co-worker Sam 

in the clinic area. He asks Sam to put the files on his desk. Before getting a reply from 

Sam, he leaves. Sam was not very happy because he was also just about to leave. He 

ends up leaving the files on the table in the clinic, an area where other patients may 

see the files.

What measures should Rolando have taken to protect patient confidentiality? 

Rolando should have ensured that patient records that contain patient names 

and other identifying information were placed in a closed locked file cabinet. 

In addition, no papers should be exposed when workers are away from the 

work area, even for brief periods of time.

7.4 Janice is an outreach worker at a TB clinic. She has been trying to contact her patient 

Jerry for several days. She has visited his home several times and tried to call him. 

One time when she visits Jerry’s house she sees Jerry’s neighbor. The neighbor tells 

Janice that Jerry just left. Janice introduces herself to Jerry’s neighbor and explains 

that she is from the TB clinic in the health department and is looking for Jerry. She 

tells the neighbor that if she sees Jerry, please tell him that she has stopped by to see 

him. Finally, she leaves a message for Jerry on the front door of his house. She does 

not have any envelopes for her letter, but decides Jerry must really get her message 

and so she tapes it to his door. 

Did Janice do anything that possibly threatens Jerry’s confidentiality? 

Yes. Janice revealed private information about Jerry to his neighbor without 

his permission.

What measures should Janice have taken to protect Jerry’s confidentiality? 

Janet should not have revealed to Jerry’s neighbor that she was from the TB 

clinic in the health department. Janice could have gathered information on 

Jerry’s whereabouts without revealing sensitive information to his neighbor. 

Finally, Janice should not have left the letter on Jerry’s door. 

Module 7—Patient Rights and Confidentiality in Tuberculosis Control 

36

CS329840-A Publication Number 99-6206