Self-Study Modules on Tuberculosis
Module 7: Confidentiality in Tuberculosis Control
Answers To Case Studies
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 tests for TB, 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 the contact investigation interview, 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 that he would lose his job. Finally, Van also admitted to injecting drugs with some friends once in awhile, 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 confidentiality?
By bringing his health problem to the attention of a health care worker, Van has entrusted personal information to the health care worker. If sensitive personal information about Van is revealed to a coworker, friend, or acquaintance without Van's permission, there may be serious consequences.
- His relationship with the health care worker may be damaged, possibly affecting his care
- He may lose his job or be evicted from housing
- He may be stigmatized or rejected by his friends, family, and others
- The health care worker may lose the trust of other patients
- What can the health care worker do to develop trust
There are three ways to earn a patient's trust including
- Respecting Van's autonomy, his right to determine what will be done with his body, belongings, and personal information
- Freely providing complete and accurate information to him
- Rigorously maintaining confidentiality
Van has a lot of fear that others (employer, friends) will find out about his TB disease. He is also afraid he will be reported to immigration authorities. Van should be reassured that the information he shares, as well as information regarding his diagnosis, will not be shared with others and that the health care worker will keep all information confidential.
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.
- Why is the health department able to obtain a court
order, despite Mr. Jones' wish to stop treatment?
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 Mr. Jones poses a significant health threat to other people, he can be ordered by a court to participate in and complete his DOT. If he does not comply with this order, he could be detained until treatment is completed, depending on the strength of state and local TB control laws in his jurisdiction.
- What should be done to protect Mr. Jones' rights
to autonomy, information, and privacy?
Autonomy is the right of a patient to determine what will be done with his or her body, personal belongings, and personal information. Although Mr. Jones has been ordered to comply with treatment, he should be able to participate in decisions about how his treatment is carried out. Health department staff should discuss the treatment and adherence plans with Mr. Jones, allowing him to have some input into these plans whenever feasible.
Mr. Jones has a right to information about his medical diagnosis, treatment regimen, and progress, as well as a right to review the information in his medical records. The health care worker should be careful to follow due process in working with Mr. Jones and documenting his therapy.
In this situation, maintaining the confidentiality of Mr. Jones' information is critical. Although disclosure was necessary to obtain the court order, it should have been strictly limited to those public health authorities who needed the information. Any health department or law enforcement officials who are involved in enforcing Mr. Jones' order should take great care to protect his right to privacy. A breach of confidentiality in these circumstances can further undermine the patient-health care worker relationship and lead to continued resistance to adherence-promoting measures.
7.3. Ms. Rita Ramirez, a young mother of two children, has been diagnosed with infectious TB. She is also infected with HIV, which she contracted through sexual contact with her current partner, an HIV-infected injection drug user. Ms. Ramirez works in a factory that assembles small parts for electronic appliances; there are over 250 workers at the plant. She is very concerned about her job security, having only recently begun work on a temporary basis. Ms. Ramirez has consented to a treatment plan including a DOT regimen and is willing to cooperate with the contact investigation. She will inform her household contacts, but does not want anyone at work to know she has TB disease.
- Why is it important to protect the confidentiality
of Ms. Ramirez' information?
By bringing her health problem to the attention of a health care worker, Ms. Ramirez has entrusted personal information to the health care worker. Both TB disease and HIV infection have some social stigma attached to them and have serious implications for the patient's health. If sensitive personal information is revealed to a coworker, friend, or acquaintance without Ms. Ramirez permission, there may be serious consequences:
- Her relationship with the health care worker may be damaged, possibly affecting her care
- She may lose her job or be evicted from housing
- She may be stigmatized or rejected by her family, friends, or others
- The health care worker may lose the trust of other patients
- What steps should be taken to ensure that confidentiality
Ms. Ramirez should be told about her right to privacy and the measures that will be taken to maintain confidentiality. The health care worker in this case should be sensitive to her fears, explain the importance of screening the contacts, and assure her that all information, including her name, will be kept confidential and will not be shared with authorities. Health department staff will have to inform the workers of their possible exposure and screen people in the workplace. This should be done with as much discretion as possible, usually after some negotiation with the employer about the best way of informing workers, offering screening (on-site if possible), and providing follow-up care. It should also be pointed out to the patient that the health department has no control over family members, friends, and others whom she informs of her diagnosis and their exposure; she should make sure these are people she trusts and should stress the need for them to be discreet with her personal information.
Because Ms. Ramirez is infected with HIV, the health care worker should explain who is considered a contact for the purpose of TB investigations and that both Ms. Ramirez's name and her HIV status will be kept confidential. HIV reports are held in strictest confidence and in many jurisdictions are protected by statute from subpoena. For clinical care purposes, however, HIV-related information should be shared between TB care providers and other health care providers in accordance with state and local laws.
7.4 Rolando is a health care worker at a busy 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 papers and forms he has been working on that day. He is on his way to put the papers and 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 just leaving himself. He ends up leaving the files on the table in the clinic, an area where other TB patients may see the files.
- What measures should Rolando have taken to protect
Rolando should have ensured that patient records that contain patient names and other identifying information are 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. Health care workers have a duty to protect patient records from unauthorized access. Information should be kept in closed, locked file cabinets except when being processed by authorized officials.
7.5 Another outreach worker, Janice, has been trying to contact her patient Jerry for several days. She has visited his home several times, and tried to call him on the telephone. 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 the reason she is looking for Jerry is that he has TB and has missed taking treatment for over 1 week. She also tells the neighbor that if she sees Jerry to please tell him that she has stopped by to see him. Finally, she leaves a message for Jerry on the door of his apartment. She does not have any envelopes for her letter but decides Jerry must really get her message and so she tapes it to his front door.
- Did Janice do anything that possibly threatens Jerry's
confidentiality? What measures should she have taken to protect
Yes. Janice revealed private information about Jerry to Jerry's neighbor without authorization. Janice must be discreet when making patient visits. She should not have disclosed Jerry's condition to Jerry's neighbor. Also, she should not have revealed 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 Jerry's neighbor. Finally, when Janice left the letter on Jerry's door, it should have been left in a sealed envelope, marked "Confidential," and addressed specifically to Jerry.