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Patient Notification Toolkit

Section 1: Developing Documents for a Patient Notification

A patient notification almost always involves a letter being mailed to each patient who was potentially exposed to bloodborne or other pathogens. Patient notifications can be conducted via phone call if the number of patients being notified is small.  Personnel who are responsible for making the calls must be comfortable with the script they will use to deliver the message and have the ability to answer any immediate questions the patients may have. Most often letters are used to quickly deliver a consistent message to all patients, using certified mail or other traceable shipping service to verify delivery. Other materials (e.g., testing recommendations letter, test results letter) may or may not be needed depending on whether testing is being recommended by the public health authorities who are conducting the investigation. CDC is available to assist with the process of developing documents for a patient notification.

This section offers sample notification letters, a summary of formative research on patient notification conducted by CDC, and resources on risk communications. Additionally, links to fact sheets on bloodborne pathogens (e.g., hepatitis B, hepatitis C, and HIV) and injection safety are included.

Sample Materials

Sample Patient Notification Letters

Patient notification letters can vary based on who is issuing them (a health department or a healthcare facility in coordination with a health department), whether just an infection control lapse or actual disease transmission has been identified, and whether or not testing is being recommended. Here we are including two sample letters with the following parameters:

  • Sample Patient Letter A: No Disease Transmission Identified
    Download Customizable letter [Doc - 23 KB]
    This sample letter was issued by a healthcare facility when an infection control breach was recognized but no disease transmission had yet been identified. Testing was recommended in this case.
  • Sample Patient Letter B: Disease Transmission Identified
    Download Customizable letter [Doc - 25 KB]
    This sample letter was issued by a health department when disease transmission resulting from an infection control breach was identified. Testing was recommended in this case.

Sample Primary Healthcare Provider Notification of Testing Recommendations Letter

Download Customizable letter [Doc - 26 KB]
This sample courtesy letter is intended for the patients’ primary healthcare provider to inform him/her that the patient is receiving a notification letter, as well as which tests are recommended for the patient. When testing is being recommended, options for testing typically include the facility where the incident occurred, the patients’ individual healthcare providers, an independent laboratory, or the health department. Sending a letter such as this (to the patients’ primary healthcare providers and to all area healthcare providers and laboratories) can help assure that the correct testing is provided to all patients. Alternatively, a letter such as this can be sent to patients in a packet with the notification letter for them to take with them to their primary healthcare provider.

Sample Patient Test Results Letter

Download Customizable letter [Doc - 27 KB]
This sample letter tells patients their test results were negative. If results are positive, a healthcare provider typically conveys the information in person or via telephone so that all questions may be answered and a treatment or follow up plan can be discussed.

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Additional Resources

What Patients Expect to See in a Notification Letter
Summary Results from Patient Notification Focus Groups (Schneider et al, J Patient Saf 2013:9;8-12). This summary summarizes information patients expect to see in a letter, their key concerns, the appropriate tone for the letter, and the amount of information to include.

General Principles of Risk Communication
This is a summary of risk communication principles adapted from CDC guidelines. Reynolds, B. 2012. Crisis and Emergency Risk Communication 2012 Edition. CDC, Atlanta, GA: http://www.bt.cdc.gov/cerc/pdf/CERC_2012edition.pdf [PDF - 1.66 MB]

General Fact Sheets and Resources

The following links provide general information on bloodborne pathogens including hepatitis B virus (HBV), hepatitis C virus (HCV), and HIV.

Injection Safety Fact Sheets and Resources for Patients and Healthcare Providers

For Patients

For Healthcare Providers

One & Only Campaign

Patient Resource: Compassionate Response Toolkit

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What Patients Expect to See in a Notification Letter

In the fall of 2009, CDC conducted six focus groups with general public participants to obtain feedback on patient notification letters as well as to assess knowledge and awareness of safe injection practices. Focus group participants provided valuable feedback on what to include in a letter, as well as key concerns, the appropriate tone for the letter, and the amount of information to include. Below is an outline of the focus group results.

Summary Results from Patient Notification Focus Groups

  • Participants had somewhat limited understanding of safe injection practices and the diseases that can be transmitted by unsafe practices.
  • Focus group participants thought unsafe injection practices were more common in hospital settings than in a healthcare provider’s office. However, a review of U.S. outbreaks resulting from unsafe injection practices in the past 10 years indicated that the majority of them took place in outpatient settings. 
  • Participants had a neutral perception of the risk of getting an infection from an unsafe injection practice.
    • — News of an infection may come as a surprise to the patients, because they don’t see themselves as being at risk.
  • Cost of exams, treatments, etc. were key concerns to focus group participants if they received a letter.
  • All but one participant said they were “very likely” to get tested if they received a letter.
  • Focus group participants would continue to seek medical care if they received a letter; some would even go back to the healthcare provider where the incident occurred.

What to include in a letter

  • How/where it happened
  • Possible symptoms
  • Corrective actions taken
  • 24-hour contact number
  • Assurance that the correct patients are being contacted
  • Plan of action/next steps

Key concerns from patients

  • What to do next
  • Timeframe of disease/testing
  • Who’s paying for what
  • Who’s liable
  • What disease/how serious
  • Whether authorities are contacting the correct patients

Tone of the letter

  • Factual, clearly stated
  • Apologetic, empathetic
  • Personal, urgent
  • Soft/neutral
  • Accommodating to the potentially infected
  • Assuring that things will be taken care of

Source

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Guiding Principles of Risk Communication

When patients receive a notification phone call or letter, they may be overwhelmed with a mix of emotions – fear, loss of trust, and lack of control. Following risk communication principles in communicating during patient notification events is critical. Past patient notification events have also highlighted the need to give healthcare providers and patients concrete action steps. These action steps help individuals who are feeling a loss of control in the situation to have some control of their health and the situation. Here are some guiding principles to consider in developing your messaging;

Develop goals and key messages

  • Goal 1: Ease public concern – e.g., risk might be low, it may be limited to a certain number of patients. Avoid over-reassurance.
  • Goal 2: Give guidance on how to respond – e.g., take these precautions, get tested, contact your healthcare provider.
  • Goal 3: Explain the risk –be transparent, don’t minimize or sensationalize.

Stay on message

  • Repeat to reinforce – e.g., start off by saying the risk is low, repeat (using different words) as often as possible

Deliver accurate and timely information

  • Stress preliminary nature of information, update frequently

Be consistent

  • Use consistent names and terms throughout a situation

Acknowledge uncertainty

  • Honestly admit it when information is not known
  • Explain what you are doing to learn more
  • Provide a timeframe for information gathering

Build trust and credibility

  • Accept and involve the public as a partner
  • Appreciate the public’s specific concerns
  • Be honest and open
  • Work with other credible/trusted sources who will validate your messages
  • Meet the needs of the media

Diffuse anger and hostility

  • Acknowledge the existence of hostility, and state that you understand the public’s need to be angry
  • Be empathetic and even apologize
  • Send the message that you are working hard to get the situation under control

Other suggestions

  • Don’t try to fully inform and educate audiences on the minutia of issues
    • — Focus on empathy, efforts, and results
  • Use familiar frames of reference to explain how much, how big, how small, etc.
  • Use examples, stories, and analogies to make your point
  • Avoid negative words and phrases
  • Speak for the organization – use “we”
  • Don’t speculate
  • Avoid acronyms and jargon

Source
Reynolds B. 2002, Crisis and Emergency Risk Communication. CDC, Atlanta GA
http://www.bt.cdc.gov/cerc/pdf/CERC_2012edition.pdf [PDF - 1.66 MB]

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