Self-Study Modules on Tuberculosis
Module 7: Confidentiality in Tuberculosis Control
Protecting Patients' Rights
Patients have certain rights concerning their personal and private information relevant to their medical care. Some of these rights are summarized in Table 7.1, and include the right to
- 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. A patient discloses his or her personal information to the health care worker in order to receive appropriate treatment and quality care. Health care workers working together to resolve a patient's problem share information about that patient among themselves in order to provide quality care. In addition, health care workers are sometimes asked by a third party -- an employer, a researcher, or even the press -- to disclose patient information for specific purposes. The patient needs to give specific authorization or permission to allow a third party to have access to the patient's confidential information. The third party's request for patient information falls outside the bounds of the provider-health care worker relationship.
To the extent possible, the patient should have control over
- Who will receive any personal information
- What information should be released to each requestor
- The duration of the authorization
Often, patients are asked to sign a specific waiver or form, to allow their health information to be used by third parties. Figure 7.1 presents a sample authorization form for disclosure of medical record information. When such authorization forms are used, they should be carefully explained to patients so the patient's consent to disclosure is informed. However, patient waivers are NOT needed for routine case reporting, the required reporting of suspected or confirmed TB cases to a public health authority, or when specific regulations allow the transfer of information needed to qualify a patient for government funding.
The patient has a right to refuse requests for information 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 whether such requests are legitimate and valuable before asking patients to authorize disclosures.
Figure 7.1 This is an example of an Authorization for Disclosure of Medical Record Information.
Source: Guidelines on Institutional Policies for Disclosure of Medical Record Information, published by the American Hospital Association, copyright 1979.
The Right to Maintain Privacy
Health care workers should protect information revealed during provider-health care worker encounters, including all written or electronic records of these encounters. Only those persons directly involved in the care of the patient's health problem 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 data on TB patients. Personal information shared by the patient with his or her health care worker is considered privileged information; that is, information that the health care worker has a responsibility to protect. When the identity of the patient is either directly included in or can be deduced from such information, it is sometimes referred to as patient-identifiable information. 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 (such as an insurance company)
- Conducting institutional review of the quality of care and appropriateness of expenditures
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. The right to autonomy has some limitations designed to protect the patient (especially if the patient is a child or a mentally incompetent adult). In the case of such a patient, a parent or legal guardian acts as the decision maker. For example, the court may intervene if a parent or legal guardian withholds potentially life-saving treatment that is clearly indicated for a child.
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 or potentially infectious TB disease refuses treatment. Because he or she poses a significant health threat to other people, such a patient may receive a court order, which is an order issued by a court mandating DOT or, in very rare cases, detention in a facility until treatment is completed (see Module 9, Patient Adherence to Tuberculosis Treatment, for further information on nonadherence and its legal remedies).
With the exception of the circumstances mentioned above, autonomy means that health care workers should respect the decisions of patients about their health care. When a patient agrees to follow a treatment plan recommended by a health care worker, the patient is said to have given his or her consent to that plan. Consent is acceptance or approval of what is planned or done; it involves voluntary agreement to an action, whether it is a treatment option or a diagnostic test. The provider-health care worker relationship is founded on the patient's consent to the care being provided.
Informed consent is a patient's written consent to a surgical or medical procedure or other course of treatment, given after the health care worker has informed the patient about the potential benefits, risks, and alternatives involved. The concept of informed consent is based on the principle that a health care worker has a duty to disclose information that allows the patient to make a reasonable decision regarding his or her own treatment. The informed consent procedure is provided for under state medical consent laws.
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 appropriate, informed decisions about his or her health care. For example, a patient with drug-resistant TB has a right to know the therapeutic options available, the duration of treatment, potential side effects of the drugs, and the expected outcome, or prognosis. This information may be valuable to the patient not only for making health care decisions, but also for making other decisions about important issues such as employment, housing, or family matters.
A patient also has a right to review the information in his or
her medical record. A 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 or amendment. 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 or amended, the
patient can usually file a statement of disagreement
that indicates his or her version of the story. This is a statement
filed by the patient stating there is a disagreement with the health
care worker or institution regarding the patient's record. The documentation
of a patient's medical history is very important and can have serious
consequences for the patient; therefore, it is very important that
it be as accurate and objective as possible.
Summary of Patient Rights
|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.|
Following Due Process
When interacting with patients, 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. It is extremely important that an established course be followed so that all patients are treated equally and receive attention for their individual needs.
Health care workers should receive training in and become informed about the policies and procedures used in their area for
- Obtaining informed consent
- Providing information to patients
- Protecting confidentiality
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. Health care workers should always document
- Patient requests for information
- Concerns about autonomy
- Decisions about disclosure of patient information
|Study Questions 7.8-7.12
7.8. What is an authorization or waiver form and when is it used?
7.9. What is patient-identifiable information? List four specific uses for this information.
7.10. What is informed consent?
7.11. What are the four types of patient rights and what is the purpose of each of the patient rights?
7.12. What is due process and why is it important?
|Case Study 7.2
Mr. Alvin Jones is a patient with infectious TB disease who has been recently discharged from the hospital. While hospitalized, Mr. Jones was very sick and had no problems with taking his medication or undergoing diagnostic procedures. Now that he is back at home, he has stopped taking his medications, has missed two clinic appointments, and has continually refused to speak to the health care worker assigned to his case. After many attempts to inform Mr. Jones of his condition and the need for treatment, the health department finally obtained a court order requiring Mr. Jones to complete a directly observed therapy regimen. Mr. Jones, not wanting to get into legal problems, has reluctantly agreed to meet with the health care worker to establish a treatment plan.