The CDC Foundation is an independent nonprofit and the sole entity created by Congress to develop collaborations between the Centers for Disease Control and Prevention (CDC) and philanthropic and private sector organizations and individuals to support CDC’s critical health protection work. Since 1995, the CDC Foundation has launched more than 1000 programs, with work in over 130 countries last year.
In its programs, the CDC Foundation tackles health issues, such as infectious diseases, chronic diseases, birth defects, occupational health, environmental health, and the health of patients undergoing chemotherapy.
The CDC Foundation is celebrating the 10-year anniversary of its Preventing Infections in Cancer Patients program. This program focuses on providing information, action steps, and tools for patients, their families, and their healthcare providers to reduce the risk of developing potentially life-threatening infections while undergoing treatment with chemotherapeutics.
We had the pleasure of speaking with Lisa C. Richardson, MD, MPH, of the CDC about the impact of this program, how it has evolved over the past decade, and how the CDC Foundation is marking the program’s 10-year anniversary.
JONS: To begin, we’d like to congratulate you on the 10-year anniversary of the Preventing Infections in Cancer Patients (PICP) program. Can you briefly describe the program, including its goals, target audience, and resources?
Dr Richardson: Thank you. I’m very proud of the work we’ve done over the past 10 years. PICP was launched by the CDC and the CDC Foundation with the goal of providing evidence-informed tools and resources to patients, caregivers, and oncology providers to help lower the risk of infection during chemotherapy. The program includes 2 foundational resources—our website (PreventCancerInfections.org), which includes educational information and a risk assessment tool, and the Basic Infection Control and Prevention Plan for Outpatient Oncology Settings. After 10 years, we have continued to evolve the program and extend its reach with new bilingual resources like our Spanish website, TINA, and TINA en Español, a virtual interactive healthcare provider.
JONS: Let’s back up 10 years to 2009. How was the need for this program identified?
Dr Richardson: Each year more than 1.7 million people are diagnosed with cancer, and more than 650,000 of them receive outpatient chemotherapy. Many of these patients receiving chemotherapy end up in the hospital with an infection. As your members know, chemotherapy can weaken the immune system causing neutropenia, which can lead to an increased risk of infection, delays in their treatment, hospitalizations, and sometimes death. It was clear that something needed to be done.
Our latest data from the CDC show that an infection linked to neutropenia is one of the most serious side effects of chemotherapy—hospitalizing more than 108,000 adults and children in the United States with cancer in 2012.
JONS: Can you speak to the rationale for providing education tools directly to patients on the associated risks of chemotherapy-induced neutropenia?
Dr Richardson: We have learned that many cancer patients may not be aware of the risk or dangers of getting an infection during chemotherapy, or the things they can do to minimize their risk. We have also learned that it’s difficult for patients to absorb all the information they’re told in their oncologist’s office. For these reasons, we wanted to provide easy-to-understand resources that would educate and empower patients to take control. As an oncologist, I often hear from patients and friends how undergoing treatment for cancer is one of the most overwhelming times they have ever experienced. I always tell my patients that one of the most important things for them to understand is the impact that treatment can have on their immune system, and to know there are things they can do to help prevent an infection during their treatment.
JONS: How have the program and its resources evolved over the past decade?
Dr Richardson : The program’s biggest evolution has been the addition of bilingual resources. In 2017, one of the top on-site searches for our website was “Spanish Resources.” People were looking, but at the time we didn’t have any resources available for them. With 1 in 3 Hispanic men and women diagnosed with cancer each year and few Spanish-language resources existing on this topic, we thought it was important to provide resources to the Hispanic community. One of our spokespeople, Vivian Diaz Espinosa, has talked about how she had to serve as an interpreter during her father’s cancer treatment, and how difficult it was to be the one who relayed tough news. Our hope is that our Spanish language resources will help alleviate some of this burden.
JONS: What innovations have you introduced into the program to help patients reduce their risk of infection?
Dr Richardson: As our program approached its 10-year anniversary, we knew we wanted to add a new resource—something different than anything we had done before. So, we turned to the power of technology, especially digital health and the advancements that have been made in this area, to capitalize on these advancements and create online tools and mobile apps that use virtual human technology to engage and educate in novel ways.
JONS: Tell us more about these online tools and free mobile apps that use virtual human technology. Can you describe the app? What are its intended uses?
Dr Richardson: I love talking about this new resource. TINA, which stands for Talking about Infection and Neutropenia Awareness, is an interactive and evidence-based online tool and free mobile app that uses gaming technology to create a unique experience. There is evidence that people can learn better from virtual humans—they retain information better and are not afraid to ask “stupid” questions.
For patients, TINA is a fully animated virtual provider who asks and answers questions about the risk for infection during chemotherapy. For providers, like your members, they will meet TINA and her virtual patient Joe and role-play a conversation to help them improve how they talk with their patients. For providers, TINA helps improve patient-physician conversations, training providers to avoid using medical jargon, something we all are guilty of sometimes. Since she is emotionally responsive to a user’s input, I’ve come to think of TINA as a real person.
JONS: Have you been able to measure the impact of TINA or the PICP program? Can you share a success story?
Dr Richardson: Absolutely, and I actually have a few stories. My favorite story is not about numbers or data, although I love those too…it’s about hearing that our resources are getting into the hands of patients. I was in an outside meeting talking about this program when one of the attendees picked up our fact sheet and said she had just seen this on her mom’s refrigerator. Her mom had just started chemotherapy for breast cancer, and her nurse gave her our fact sheet. To me, that’s success.
Our website is also making a difference. By providing simple, evidence-based materials, cancer patients and caregivers report that they understand their risk for neutropenia and infection better after visiting our website.
And most recently, we are hearing great results from TINA. Our data show that patients who complete TINA have a greater understanding and comfort with the risks of neutropenia and infection, and what they can do to stay safe, than they did before using TINA.
JONS: Is the CDC involved in other oncology programs?
Dr Richardson: The work of the CDC in 2018 included innovative communication approaches to promote cancer prevention, screening and early detection, research, and evidence-based programs. Through its national programs, CDC’s Division of Cancer Prevention and Control works with state health agencies, territories, tribes and tribal organizations, and other key organizations to develop, implement, and promote effective cancer prevention and control practices. A big focus for us is survivorship and how to navigate the time after you complete therapy. This can include how to stay well, but also how to cope psychologically with being a cancer survivor.
JONS : How can oncology navigators get involved in the PICP program?
Dr Richardson: It’s very easy to use our tools. I encourage you to share our website and its resources, including TINA, with your patients. I have heard from clinics that they download our fact sheets and include them in their chemotherapy education materials, or they simply give their patients our website and encourage them to use it.
For you professionally, check out the Basic Infection Control and Prevention Plan for Outpatient Oncology Settings and ensure your practice is doing its part, and try out TINA and improve your conversation skills with your patients about preventing infections.
Your members are a unique and vital part of a cancer patient’s diagnosis, treatment, and survival. Nurses’ dedication to their patients and their profession inspires me to continue my work.
JONS: How are you marking the 10-year anniversary of the program?
Dr Richardson: For me, this year is no different than the previous 9 years, except I am extremely proud of its longevity and impact. It gives us a chance to reflect on our progress and accomplishments. Our goal was, and always will be, to help cancer patients prevent infection during chemotherapy. In honor of our big milestone, the program developed its first-ever PSA, which I think helps shine a light on the program’s longevity and the importance of infection prevention during chemotherapy.
JONS: What’s next for the PICP program?
Dr Richardson: Over the past decade, I’ve seen first-hand the difference that clearly communicated information can make. My hope is that working with partners like Amgen, who have supported PICP for the past decade through the CDC Foundation, will continue to help us find additional ways to advance cancer prevention and care of cancer survivors everywhere.
JONS: Thank you very much for your time today, and our best wishes for continued success.
Dr Richardson: Thank you.