Best Practices in Patient Notification: What Patients Want to Know When Things Go Wrong

Background:When healthcare providers do not follow basic infection control practices, patients are put at risk for life-threatening illnesses. Since 2001, more than 150,000 patients have been potentially exposed to hepatitis B and C viruses and HIV due to unsafe medical injection practices in U.S. healthcare facilities. When unsafe practices or the resulting infections are discovered, a patient notification process typically ensues.

Program background: Although the circumstances surrounding unsafe practices may vary, the patient notification process, when conducted as recommended, is fairly consistent and predictable. Additionally, patient notification events have the potential to be high profile and sensitive, and often need to be conducted rapidly following the discovery of an unsafe practice.

Evaluation Methods and Results: Realizing the growing need for guidance on the notification process, CDC conducted a series of focus groups to assess public perceptions and preferences surrounding patient notifications (Schneider et al, J Patient Saf2013:9;8-12). CDC also conducted a series of stakeholder meetings to elicit from partners some best practices in patient notifications. CDC then compiled the results of this formative research and stakeholder engagement into a Patient Notification Toolkit. The toolkit includes the key steps a healthcare facility or public health department should take to initiate a patient notification and provides sample notification letters, press releases, and fact sheets. The patient notification focus groups assessed preferences for who should notify patients, what methods should be used, what information should be included in a notification letter, and the preferred tone of the letter. These findings are included as a tip sheet in the CDC Patient Notification Toolkit. The first section of the toolkit provides resources to assist with creating the notification letter and other documents. It also includes links to fact sheets with basic information on the diseases that can be transmitted by basic infection control lapses. The second section covers planning media and communication strategies and includes sample press releases. The third section describes how to establish communication resources to support patient notification, such as setting up a call center. The final section offers strategies for releasing patient notification letters and describes how to work with the media and partners.

Conclusions: Insights from the patient notification focus groups and resources and tips from the Patient Notification Toolkit can assist state and local health department staff with conducting a patient notification following an unsafe practice.

Implications for research and/or practice: Patients do not expect to be put at risk for an infectious disease when seeking treatment for another illness. While public health authorities have a duty to notify patients of their potential exposure, the notification process itself is not without risk of causing harm to patients due to fear and anxiety caused from being notified of potential exposure without understanding the true scope of a real but finite risk. This heightens the need and responsibility to conduct a patient notification in a manner that effectively and accurately communicates risk as well as what patients need to know and direct them in the actions they should take.