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Health Literacy

Health literacy is defined as "the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions."1 The skills required encompass reading, listening, analytics, numeracy, and decision-making, plus the ability to navigate a complex and changing healthcare delivery system. Healthcare providers, patients, and other stakeholders have important roles in health literacy.

According to the Centers for Disease Control and Prevention (CDC):2

Anyone who provides health information and services to others, such as a doctor, nurse, dentist, pharmacist, or public health worker, also needs health literacy skills to

  • Help people find information and services
  • Communicate about health and healthcare
  • Process what people are explicitly and implicitly asking for
  • Understand how to provide useful information and services
  • Decide which information and services work best for different situations and people so they can act

 

Given the increasing complexity of cancer diagnosis, treatment, follow-up with survivorship care plans, health literacy is integral to delivery of patient-centered care.

1. Nielsen-Bohlman L, Panzer AM, Kindig DA (eds). Health Literacy: A Prescription to End Confusion. Institute of Medicine Committee on Health Literacy. Washington, DC: National Academies Press; 2004.
2. Centers for Disease Control and Prevention. What is Health Literacy? 

Featured Program: Let's Be Clear: Communicating to Improve the Cancer Patient Experience

With this education project ACCC seeks to help cancer programs across the country to improve survivorship programming through the application of the health literacy principles.
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Interactive eCourse

Health Literacy & Clear Communication is a dynamic eCourse that delivers simple methods to improve patient-provider communications. Engage with oncology-specific exercises, activities, and situations and receive real-time feedback and suggestions to put evidence-based strategies into practice.
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From the ACCCBuzz Blog

Facilitating Shared Decision-Making in Cancer Care


March 30, 2021
Kris Headshot

Advances in cancer treatment often mean that patients have multiple therapeutic options to choose from. As a result, engagement in decision-making is more important than ever. To address the increased need for strong patient engagement, the Association of Community Cancer Centers (ACCC) has launched an educational initiative to identify barriers to and effective practices for assessing current knowledge about shared decision-making (SDM) and how it is practiced in community and academic settings. The project included the development of a resource library, a national quantitative survey, qualitative interviews and focus groups, a six-part expert webinar series, and a recently launched publication, Shared Decision-Making: Practical Implementation for the Oncology Team. This publication highlights the SDM experience of multidisciplinary team members from four cancer programs.  


One emerging theme from this work was clear: Navigation is integral to supporting the shared decision-making process in cancer treatment. ACCC talked to the Levine Cancer Institute (LCI) Director of Patient Navigation, Kris Blackley, RN, MSN, BBA, OCN, about the role navigators play in facilitating shared decision-making. LCI has a large navigation program with 32 navigators across eight locations and includes a Spanish language navigator. 

 

ACCCBuzz: How do navigators facilitate engaging patients in shared decision-making?  

 

Kris Blackley: Navigators can help in a few ways. One way is to speak with the patient prior to their visit. Navigators give the patient a broad overview of cancer treatment and explain, ahead of time, the things that the physician will discuss. It is not uncommon for patient questions to arise during these conversations.  

 

Navigators encourage patients to come to their visits with questions that will help them in their decision-making process. We will often accompany patients to the initial oncology appointment or consultation, where we can be helpful in a couple of ways. Sometimes navigators can prompt patients to ask questions that are on their mind or help clarify concerns that the patient and navigator discussed prior to the visit. Sometimes patients are more comfortable asking us questions than asking their physicians, so navigators can help clarify and answer patient questions once the physician leaves the room. 

 

ACCCBuzz: How does financial navigation support a patient’s ability to engage in SDM? 

 

Kris Blackley: A key role of navigators is to assess our patients and identify potential barriers to care. This is done early on with patients and continues throughout their cancer journey. The navigators have a good understanding of patient concerns and worries and work to “triage” our patients to the supportive services that they need. Many times, that involves our social workers and financial counselors.  

 

Because we form close relationships with our patients, we can often help advocate for them and communicate their worries or concerns to the clinical team. As an example, we had a patient who was coming to our downtown office to meet with his surgical team, but when it was time for him to start radiation, he confided in his navigator that he had concerns. This is a five-day per week treatment for six weeks, and the patient was concerned that he did not have a car or other reliable way to get to his appointments if he had to come all the way downtown. They discussed some potential alternatives, and ultimately the physicians agreed to let him get his radiation therapy closer to home.  

 

ACCCBuzz: How do your navigators approach SDM differently based on characteristics like health literacy? 

 

Kris Blackley: We do try to meet patients where they are. We received grant funding to hire a bilingual Hispanic navigator, and we are so lucky to have a wonderful nurse who is a certified medical translator and is able to work with our Spanish-speaking population. Non-English-speaking patients meet so many obstacles in not only going through their treatment, but also navigating the hospital system. This nurse works closely with these patients and develops an important level of trust with them, which is very important. She is able to help facilitate shared decision-making between the patient and the physician in a way that is not always readily available to this patient population.  

 

ACCCBuzz: How does shared decision-making benefit both the patient and Levine Cancer Institute?  

 

Kris Blackley: I believe that when a patient is diagnosed, everything they know in this world shifts. Nothing will ever be the same for them or their families. There is a huge loss of control for these folks, and working with our patients through shared decision-making is one way to help them regain some of that control. Our mission at LCI is to treat patients closer to home. We work to provide the same quality of care at all of our regional sites so patients have equal access to all treatment options and are empowered to make the right decision for them. Ultimately, when patients are involved in decisions about their care, not only does it make them more satisfied, but we can also improve compliance, which leads to better outcomes.  

 

Shared decision-making is an integral component of the 2021-2022 President’s Theme, Real-World Lessons from COVID-19: Driving Oncology Care Forward, which is dedicated to health equity, the need for high-impact supportive care services, and staff well-being and resilience. 

 

Additional shared decision-making tools from ACCC: