We have come a long way from when the word “cancer” was never spoken and people kept their diagnosis a secret because of the stigma and shame that was often attached to cancer.

One major concern for many diagnosed with cancer, however, is—do I have to, and how do I, tell other people about my diagnosis. More than 70 percent of the health care professionals we work with and train tell us that their patients are asking questions about disclosure.

Health care professionals should bring up issues around disclosure, privacy and online brand with patients, and as early as possible. Patients have a choice if, when, how much and to whom they disclose their cancer diagnosis. It is an incredibly personal decision, but we want patients to know they have choices. We hear from patients who regret their decisions because they didn’t think it through or didn’t know they had choices. Health care professionals can guide patients in making conscious disclosure decisions and then encourage them to tell those preferences to whom they are disclosing.

Disclosure Online

Disclosure decisions used to just be about whether or not you would have direct, in-person or phone conversations with family members and friends. Now, with technology integrated into every aspect of daily life, we might accidently or intentionally disclose medical information online. And this isn’t just a concern for younger patients. A PWC Health Research Institute Survey (April 2012) found that 45 percent of 45–64 year olds would be likely to share medical information via social media.

There are many benefits to accessing online support; however, any disclosure decisions should be conscious ones. And there are ways to access online support, while still maintaining privacy (e.g., using social media aliases, MyLifeline.org, CaringBridge.org, closed Facebook groups, etc.).

Information shared online can have a long-term impact, and be found by anyone (e.g., future or current employers, dating prospects), so patients should make conscious decisions about if, and how much, medical information they want to share online. For example, individuals may decide to share information online because everyone at work may already know about their diagnosis and are very supportive. But most people don’t have the same supervisor or employer for their whole career.

Disclosure at Work

There are many personal reasons why individuals might decide to keep their diagnosis private, and for some, that reason revolves around protecting their employability. Unfortunately, individuals with cancer still face discrimination in the workplace. A 2015 study found that job applicants who disclosed a cancer history received fewer callbacks from managers (21%) than the applicants who did not (37%) (Martinez, White, Shapiro, & Hebl, 2016).

There are federal laws that protect the privacy of an individual’s medical condition. While the Health Insurance Portability & Accountability Act (HIPAA) covers disclosure by health care providers, the Americans with Disabilities Act (ADA) and the Family and Medical Leave Act (FMLA) provide workplace disclosure protections. There are also state laws that may be more protective or cover smaller employers than the ADA or FMLA.
 

Even though these protections exist, opportunities for inadvertent disclosure abound. One of the most common moments for inadvertent disclosure is during the medical certification process, in which health care professionals complete paperwork for patients to prove to an employer why they are eligible for time off work under the FMLA or a reasonable accommodation under the ADA.

Generally, an employee does not have to share any information about their medical condition with an employer, but disclosure of some medical information may be necessary to access reasonable accommodations or medical leave. For example, the need for an accommodation or leave is usually based on a side effect from treatment, rather than the cancer diagnosis itself. Therefore, a side effect such as neuropathy can be shared, without tying it back to a cancer diagnosis.

Often, patients will just give the employer’s medical certification form to their oncologist, who may hand it to someone else on the health care team to complete, and then it gets sent back to the employer. Rarely is there a conversation between the patient and the health care professional completing the form about what information the patient actually wants shared. And even though the U.S. Department of Labor’s Model FMLA Form does not require disclosure of a diagnosis, employers can create their own forms that do ask for a diagnosis. An employee can choose not to share their cancer diagnosis in this case. In addition, even the model form asks for the specialty area of the health care professional completing the form. So, if a patient has asked their oncologist to complete the form, and doesn’t talk to their oncologist about their disclosure preferences, the oncologist is likely to list oncology as the specialty area, giving away the patient’s diagnosis. If health care professionals and patients have proactive conversations about disclosure preferences, there are ways to protect the privacy of patients.

For more information about the nuances of disclosure and privacy, read Triage Cancer’s Quick Guide on this topic.