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Module 7: Confidentiality in Tuberculosis Control
Summary

The protection of private information is commonly referred to as confidentiality. Confidentiality involves the protection of information revealed during patient-health care worker encounters, including all written or electronic records of these encounters. Confidentiality is an essential issue in many different aspects of TB control. Health care workers need to be aware of the confidentiality issues that are relevant to patient-health care worker encounters as well as to the collection, management, and sharing of data gathered on TB patients. Health care workers have a responsibility to protect patients' confidentiality. However, health care workers may have to override these rights in some cases, in the interest of protecting the public's health. For example, patients with infectious TB disease may have some rights curtailed until they are no longer infectious.

The patient-health care worker relationship relies on an agreement to continue treatment until the patient's health problem is resolved. Health care workers should respect the patient's autonomy, freely provide complete and accurate information, and rigorously maintain confidentiality. The patient-health care worker relationship is the basis for sharing information, communicating beliefs and feelings that affect care, and building trust in the value of the interaction. The patient-health care worker relationship can be viewed as an agreement between the patient and the health care worker. Basic rules that each party will observe include respecting each other's rights and upholding certain responsibilities. If either the health care worker or the patient fails to conform to this agreement, the relationship can break down and lead to misunderstandings, a lapse in communication, or even treatment failure.

The term health care worker refers to any member of a team of health professionals who care for and manage a TB patient, including physicians, nurses, outreach workers, hospital discharge planners, pharmacists, and social workers. A third party is a person or organization not directly involved in the care of a patient's health problem. This term includes anyone who does not play an integral part in the patient-health care worker relationship.

Trust is the key to a successful patient-health care worker relationship in which the rights and responsibilities of both patient and health care worker are upheld. Trust implies a firm reliance by the patient on the integrity, ability, and character of a health care worker. If a patient trusts or has confidence in his or her health care worker, he or she is more likely to be willing and able to adhere to a regimen and follow the health care worker's instructions and advice. Health care workers should strive to be worthy of this confidence by earning the patient's trust.

Patients have rights concerning their personal and private information relevant to their medical care. These rights are summarized in the table below.
 

Type of Patient Right Purpose
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 otherwise provided by law. The patient needs to give specific authorization or permission to allow a third party to have access to confidential information.
The right to maintain privacy Only those persons directly involved in the care of the patient's health problem should have access to private information. Health care workers should protect information revealed during provider-health care worker encounters, including all written or electronic records of these encounters.
The right to have autonomy Autonomy is 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. 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 appropriate, informed decisions about his or her health care.

When interacting with patients, the health care workers should always follow due process. Due process is an established course for governmental activities or procedures designed to safeguard the legal rights of the individual. The use of standard protocols and forms can help ensure that important tasks (such as obtaining informed consent or an authorization for release of information) are not omitted. Documentation is also a crucial part of due process.

Confidentiality is an essential issue in several of the core components of a TB control program. Health care workers are required to conduct routine case reporting, which is reporting cases of suspected or confirmed TB cases to a public health authority that collects and analyzes the information. Because TB is considered a significant threat to the public's health, the disclosure of patient information is allowed for the purpose of TB control. Health departments are required to protect the confidentiality of such case reports. If a patient travels or moves, the health department of the patient's home jurisdiction should notify the health department for the area to which the patient moves. It is important that as much information as possible is relayed to the receiving jurisdiction, within the limitations of current laws and regulations governing the confidentiality of records.

When a suspected or confirmed TB case has been identified, a treatment plan is made for the patient and the patient's informed consent is obtained. It should be made clear from the beginning of treatment that confidentiality of the patient's personal information is an important priority. Health care workers should discuss confidentiality with the patient and determine who, if anyone, the patient wishes to know about his or her care or to participate in decision-making.

When a contact or source investigation is to be conducted for a reported TB case, a health care worker should interview the patient, explaining the goals of the investigation, and why it is important to know the names of contacts. The patient should be told about his or her right to privacy and the measures that will be taken to maintain confidentiality. Health care workers should conduct contact investigations without jeopardizing the TB patient's confidentiality. The patient should be assured that the contacts they name will not be told who identified them as a contact. The health care worker should be careful not to inadvertently reveal clues about the TB patient (index case) during contact follow-up.

Testing for TB infection may be mandatory for specific groups of people. Testing procedures should be designed and records maintained in such a way that confidentiality is protected. It should not be obvious to other residents or patients that a person is being evaluated because of a positive skin-test reaction.

TB programs are responsible for collecting and analyzing data, conducting overall planning and policy development, providing laboratory and diagnostic services, and providing training and education. TB control programs develop specific policies to ensure the security and confidentiality of TB records and should train staff members in procedures for maintaining and carrying out these policies. It is particularly important to protect information on HIV serostatus: in general, TB program staff should adhere to the same confidentiality standards as HIV/AIDS surveillance programs and should work with local HIV/AIDS programs to establish equivalent data confidentiality systems.

Health care workers can provide measures to protect confidentiality anywhere, whether in an office, clinic, institution, or in the field.

Additional Reading

Bruce, JAC. Privacy and Confidentiality of Health Care Information. Chicago: American Hospital Publishing; 1984.

Centers for Disease Control and Prevention. Essential components of a tuberculosis prevention and control program. MMWR. 1995;44(RR-11):1-16.

Centers for Disease Control and Prevention. Tuberculosis control laws -- United States, 1993: recommendations of the Advisory Council for the Elimination of Tuberculosis (ACET). MMWR. 1993;42(RR-15):1-28.

Centers for Disease Control and Prevention. TIMS User's Guide. Atlanta: U.S. Department of Health and Human Services; 1997.

Donaldson MS, Lohr KN. Health Data in the Information Age: Use, Disclosure, and Privacy. Washington, DC: National Academy Press; 1994.

Gostin LO, Lazzarini Z, Neslund VS, Osterholm MT. The public health information infrastructure: A national review of the law on health information policy. JAMA. 1996;275(24):1921-1927.

Veatch, RM. A Theory of Medical Ethics. New York: Basic Books; 1981.

 
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