How Much Do Patients Really Want To Know About Their Condition?

Patients who are educated about their disease are more likely to adhere to doctor recommendations, medication regimens, and treatments – but exactly how much information do they really want? 

There’s no across-the-board response to this question, since each patient is unique, with individual requirements and limitations. But there are preferences that can be surmised based on doctor and patient interactions, surveys, and research that has addressed this topic. And for healthcare professionals, understanding how much is enough (or too much), is also a key component of patient outcomes. 

First, what does the patient know? 

In an age where everyone has instant access to overwhelming data at their fingertips, it’s easy to assume that a patient has some healthcare knowledge. And while it’s likely true that they’ve done research or spoken with medical professionals, it’s crucial to determine exactly what they understand about their condition and how much of that information is accurate. 



How much do they want to know?

Each person has their own desired amount of information. Making this distinction assists in ensuring understanding, compliance, and level of comfort. According to a study published in the Journal of Health Communication (Eheman et al., 2011), patient behavior varies widely – from those who actively seek information to those who avoid it. 

The desire for information among cancer patients was found to be influenced by demographic variables, including level of education, ethnicity, race and cultural characteristics, as well as age. Pretreatment cancer patients with higher levels of education, for example, actively sought information and used the Internet more frequently. 

Exactly what do they want to know?

Other research has broken down the types of information sought by patients. Dr. Stephanie Lee, then assistant professor of medicine at the Dana-Farber Cancer Center, presented the results of a multi-phase study of patients with various hematological diseases to the American Society of Hematology.

“Patients want information about treatment options and recommendations, but they want less information about the likely course of the disease and prognosis,” summarized Lee. Findings from the study included:

  • “96% to 100% wanted to discuss treatment options, treatment goals, and physician treatment recommendations”
  • “86% … the data on patient survival”
  • “70%, the likelihood of treatment success”
  • “60%, the likelihood of cure”
  • “49%, the outcomes of clinical trials”

Lee also noted that patients tend to maintain more optimism about outcomes than their physicians, and that the Internet was a dominant resource. She estimated that “about 85%” of patients looked up information about their condition online, a trend that has only continued: According the latest research by the Pew Research Center, 72% of Internet users looked up health information within the past year, and queries about “specific diseases and treatments” make up the majority of these searches.

The Information Age: a new set of challenges

A research review, “Information Behaviors of Cancer Patients in the Information Age,” assessed that the abundance of information on the Internet raises new concerns about the reliability of the data being accessed. Cancer patients are faced with deciphering which sources are accurate – in essence, whom to trust. Further, information overload can cause frustration and confusion, hindering the ability to make informed choices. 

Fulfilling informational needs 

Healthcare marketers have a role to play in this. We must be cognizant of the fact that many patients have different education needs and that many will do their own research. Materials that are targeted toward different demographics and levels of comprehension will educate a broader range of patients facing the same disease. Surveys can help clarify these groups.

Powerful, straightforward summaries of the most accurate information about a condition can cut through much of the clutter on the Internet. In addition, stepped communications that offer additional resources for those who actively seek knowledge can ensure that they receive accurate information.

While an educated patient is preferable, especially when treating serious illnesses, understanding the nuances of information-seeking behavior is a critical facet of designing the communications that will serve them best.

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