Enhancing Patient Engagement Through Health Literacy

Healthcare and medical professionals, as well-trained experts in their field, can sometimes use complex language that makes it harder for patients to understand. As healthcare marketers, we can also get caught up in our knowledge and accidentally create content and resources that are too complicated or don’t consider patient stressors, experiences, and barriers to learning and communicating in healthcare settings.

To create more effective patient communication, we’ll explore the challenges of health literacy, define what it means, discuss the importance of health information, and provide strategies for improving patient communication. Our goal is twofold: understanding why patients don’t understand communication and why patients don’t participate in healthcare communications.

Healthcare, listening and a doctor with a woman during a consultation. Talking, help and a medical regarding health literacy and patient communications

Unasked and Unheard: Patient Communication Nonstarters

Picture this: a patient visits their doctor. The doctor asks, “What brings you in today?” After a quick seven-minute chat, the doctor wraps up with, “Do you have any questions?” While these questions seem open-ended, they can actually shut down communication for patients. They’re simply too broad, and they don’t consider the contextual uncertainty and time constraints that patients feel pressured by (and doctors are under).

Question Paralysis

According to a recent whitepaper, 8 of 10 patients leave visits with unanswered questions (Wolters Kluwer 2024), which can hurt treatment and medication adherence. These general questions can leave patients to a kind of healthcare decision paralysis. 

The pressure of communicating in the healthcare setting can lead to unintentionally missed questions, leaving gaps in patient understanding. If communication is not possible during a visit, follow up via portals, automated surveys, or other patient engagement tactics is critical. Patient outreach can fill in gaps in understanding, boosting patient experience and adherence. Unfortunately, healthcare workflows are often overloaded, and these important opportunities to reach patients go underutilized if marketers don’t help.

Patients Want Health Information

Point of care materials have proven to be desirable by healthcare consumers and practitioners, with many reporting they not only like them but crave more frequent and diversified point of care content (ZS 2024). In one survey, of the 63% who had received educational materials during visits, all reported the materials inspired confidence and other positive feelings. (Wolters Kluwer 2024

When people do speak, we need to ensure that they feel listened to by using basic conversational language that answers questions and frames responses in ways that encourage conversation, allow for continued questioning, and validate the patient.  

A Wolters Kluwer survey highlights that 46% of people still had questions after a doctor visit, and another 35% said only some of their questions were answered, leaving over 80% of patients somewhat unclear after a healthcare visit. 

We can help patients find their voice and equip healthcare providers with the tools they need through point of care engagement. A few strategies to prompt patient questions:

  • Provide patients with a pre-visit questionnaire to help them identify their concerns and questions
  • Create resources for healthcare providers and staff to foster a comfortable and encouraging dialogue  
  • Help automate or simplify patient communication pre- and post- visit 
  • Create educational materials based on patient pain points 

These strategies can create a more positive healthcare experience for the patient and provide better information to the healthcare practitioner through nonverbal communication and enhanced in-office communication. Additionally, they help connect with non-neurotypical people and patients whose conditions or current states impact their focus or conversational alacrity.

Health Literacy is Not Just About Education

The word ‘literacy’ misrepresents who we are speaking about when we talk about patients. Someone’s health or mental state can deeply impact how receptive they are to learning and communicating. Moreover, even your most educated patients may experience barriers to finding, understanding, and applying the right health information for them.

  • 50% of patients admitted to one general internal medicine unit were found to have adequate health literacy (BMC 2022)
  • Patients with low health literacy, but high education, had a higher probability of emergency department revisits (BMC 2022)
  • 65% of patients who misunderstood clinical communications had a bachelor’s degree (JAMA 2022); Only 24-38% of Americans have a bachelor’s degree (Census Bureau 2022)

If more educated people are having a hard time, clinical information is likely unintelligible to most Americans.  

That said, a patient’s level of understanding and feelings of powerlessness over their own health increase as health literacy, including education-related barriers, decreases. What is important is that marketers remember the outcome is indiscriminate of patient demographics. No one can fully participate in or adhere to health decisions, treatments, and prescription plans they do not understand or recall. 

Male patient at healthcare visit

We heard from some of our diabetes patients and some of our chronic kidney diseases that they weren’t even totally clear on what a kidney did and what it was, really.

Putting Too Much on the Patient

Patients may not know what they don’t know. Asking the right questions and expressing concerns in the limited time with a healthcare provider relies heavily on a patient’s understanding of: 

  • Gaps in their own knowledge
  • Comfort level and ability to speak on the topics
  • Trust in the provider
  • Ability to translate abstract information into their own context

Victoria Summers, principal at ZS, recently emphasized research findings illustrating how large the gap between baseline health knowledge and medical language, including basic anatomy. Patients are often learning about not only their condition but their body. “We heard from some of our diabetes patients and some of our chronic kidney diseases that they weren’t even totally clear on what a kidney did and what it was, really.” (ZS 2024

And that is supported by some fairly illuminating stats. According to a poll of 2000 people, the average American health knowledge is pretty basic (SWNS 2021): 

  • 1 in 4 could identify that there are four blood groups and only 1 in 10 knew O-negative is the universal blood type
  • Only one third of Americans know the number of valves in the human heart
  • Only a third understood know the commonly assumed average body temperature (98.6 F) or that a fever is “when the body temperature goes outside its normal range.”
  • Nearly three in ten (29%) misidentified the liver and kidney
  • A third of respondents didn’t know we have two kidneys and one in five thought we had three or more.

Be careful not to place responsibility on patients to be informed or communicate with unrealistic beliefs about their level of knowledge. 

A New Definition of Health Literacy

The most recent, credible health literacy definition comes out of a massive project called Healthy People 2030 (HP2030) created by the The Department of Health and Human Services Office (HHS) of Disease Prevention and Health Services (ODPHP). It defines health literacy in two areas, personal and organizational: 

  • Personal health literacy is the degree to which individuals have the ability to find, understand, and use information and services to inform health-related decisions and actions for themselves and others. (HP2030

  • Organizational health literacy is the degree to which organizations equitably enable individuals to find, understand, and use information and services to inform health-related decisions and actions for themselves and others. (HP2030

And the National Institutes of Health includes a definition specific to 

  • Digital health literacy as defined by the World Health Organization, is the ability to seek, find, understand, and appraise health information from electronic sources and apply the knowledge gained to addressing or solving a health problem. Examples of digital health literacy include accessing your electronic health record, communicating electronically with your health care team, ability to discern reliable online health information, and using health and wellness apps.

These definitions provide a framework for understanding the different aspects of health literacy and how they can be addressed by both individuals and organizations.

Keep It Simple and Run it By a 6th Grader

You may think you are creating plain speech, but the AMA recommends patient materials are written at no higher than a 6th grade level to meet public health literacy levels (Science Direct 2021). To be truly useful to patients, educational materials need to go beyond reading level. “Metrics such as quality, understandability, and actionability also heavily influence the usability of health information.” (Breast 2024

Simplify Language

  • Go simpler in how and what you explain using common terms and shorter sentences without presuming what is “basic” knowledge 

  • Avoid medspeak, or jargon and terms that are hard to follow

Make it Relevant

  • Frame information how conditions, treatments, and medications will impact patients in ways that are relevant to their lives

  • Keep information practical and geared toward understanding next best steps, anticipating concerns and barriers, and setting real patient expectations
Health Literacy, a child with their mother celebrates a positive doctor's visit

Design for Readability

  • Integrate both print and digital guides with visual aids to help a broader array of patients

  • Establish EHR or scheduling triggers for highly relevant print or digital materials that can help patients

  • Check that your visual design makes the material more readable, including setting accessibility standards around white space, font size, and contrast

People want a basic level of information and practical understanding to help them determine “the right treatment for them and how they should be approaching their care” (ZS 2024). The result: longer-term boosts in patient responsiveness like empowering patients to ask questions in-office and throughout their care journey. 

As true for marketers as practitioners, how we speak to patients is important in gaining trust. Helping practitioners by providing better tools and communication strategies, marketers can close the loop on patient-centered comms. Some HCP support from Six Strategies for Discussing Complex Medical Terms with Patients (Wolters Kluwer 2020), give a look into complimentary HCP strategies, such as: 

  • Developing glossaries of common medical terms and their plain language equivalents
  • Creating visual aids and infographics to explain complex concepts
  • Providing question prompt lists to encourage patient-provider communication
  • Researching and identifying patient health literacy and receptivity
  • Providing patient focus groups on messaging receptivity and comms strategies

Patient Context Can Block Understanding

Patients may suffer anxiety or concerns around their condition or seeing a doctor that also affect how well they understand health information in a care context, or how comfortable they are expressing concerns and uncertainty.  

Fear, Stigma, and Bias

You may not break into sweats when you have to step on a scale or get naked at a healthcare visit, but for some people medical settings are stressful. These feelings can come from legitimate negative experiences in healthcare, previous medical trauma, or fear of judgment about their body, mental health, or illness. Here are few facts to prove the point: 

  • 1 in 10 people felt judged or offended by something in an outpatient note (Journal of Internal Medicine 2021)
  • Up to 81% of patients withhold information from doctors about health habits for fear of judgment (Harvard Health 2021)
  • 61% of patients in a HealthCentral Survey (2022) felt their doctors had blamed them or made them ‘feel crazy’ about symptoms, with over 55% reporting worse symptoms and 28% having an emergency as a result 
  • Stigmatizing language in medical notes creates more negative feelings toward patients or patient Rx regimens throughout care journey (Journal of Internal Medicine 2018)
  • More than 75% of adults who reported being judged or treated unfairly in a healthcare setting felt it disrupted getting care (Urban Institute 2021)
  • Over 50% of people experience weight-stigmas, causing them to avoid healthcare (Medical Press 2021)

While there is a diagnosable fear of doctors and medical tests, Iatrophia, many find the healthcare visits intimidating to some degree. Healthcare experiences include many uncomfortable breaks from norms around body privacy, talking about illness, and sharing the details around lifestyle and health behavior. Over 30% of Americans avoid going to the doctor, even when in need of healthcare. 

Stigmas and discomfort around doctors may be higher in marginalized community, where the misuse of a pronoun or implicit bias may cause real harm to patients. Impacting care-seeking, as many as 24% of LGBTQIA+ people say they’ve been blamed for health problems during a healthcare visit in a poll of 20,799 people (The19th 2022). 

For patient communication, it is not hard to understand that healthcare fears, stigmas, and bias can impact patient understanding by creating hesitancy around speaking, limiting receptivity, and distracting patients in care settings.

Power Dynamics Impacting Patients

Power iniquity is the resulting imbalance when there is a sizable difference between patient and doctor knowledge. “This imbalance made some participants feel that the provider judged them not to be smart enough to understand medical information, identify valid medical concerns, or make the best medical decisions. This judgment made some participants feel powerless and have no say in their own health or how they want to manage it.” (Casanova Perez et al. 2022

The impact of perceived power imbalances may stop patients from speaking up or actively engaging in health decisions with their healthcare team. As one patient summarized, “As a professional you can say like ‘I have all these degrees and have all these years of experience, and you’re just a patient’” (Casanova Perez et al. 2022

Emotional Barriers & Health Journeys

Being a patient is vulnerable, and that vulnerability causes stress and anxiety that render communicating and hearing difficult. As physician Colleen M Farrel, MD said: 

“Patients let us into their stories before they can know if we will respond with compassion and understanding or if we will brush them off or make them feel ashamed. By saying out loud ‘this hurts’ and ‘I don’t know what to do,’ patients open the possibility of sustaining further wounds.” (Harvard Medical School 2017)

Negative emotions, including anxiety, fear, and shame, create a strong desire to avoid, whereas positive emotions encourage people to think, reason, and act. (Cordova et al 2023)

At the end of the day, we need to keep healthcare as positive and engaged as possible to encourage patients on an upward trend of engagement. If you help them communicate and understand, you’ll create a more engaged patient. 

Happy female patient thanking her doctor. Inclusive healthcare.

A Checklist for Healthcare Marketing Language

Here are some pointers from the Journal of General Internal Medicine (2022) on how to make language healthier and increase patient receptivity, even when making notes in the EHR. Check that your comms: 

  • Use person-first language. This means not using the condition to stand in for the person. For example, “a person with diabetes” instead of a “diabetic”. 

  • Avoid pejoratives, labels, and words that might blame or feel bad to the patient. Words like “victim” or “noncompliant” shut people down. Choose words that are judgment free. When necessary, talk specifically about barriers, rather than labeling behavior. 

  • Apply inclusive language, vital in increasing receptivity, reducing stress, and encouraging patient communication, especially in marginalized communities.

  • Handle social Identifiers with care. Ask if it is necessary, ethical, and compassionately being used when using racial, ethnic, or language identifiers. 

Marketing Strategies for Health Literacy

Align your marketing to health literacy criteria. Patients need to be able to easily do the following three things related to making decisions and actions for themselves and others.

Your healthcare marketing should enable patients to:

1. Find Information and Services

Enable patients to find relevant and timely information in your marketing: 

  • Use Targeted Content: Cover diverse points of care based on patient demographics, services, and accessibility. 
  • Think outside the office: Include pharmacies, clinics, labs, community centers, and digital platforms. 
  • Create Easily Identifiable content: Focus patient and caregiver locations, activities, and state-of-mind.
  • Build for Relevance: Be clear, address pain points, and make sure content is inclusive.
  • Use Accessible Formats: Design for accessibility across digital and print formats. 
  • Include for Passive and Active Patient Engagement: Tailor engagement based on patient location, receptivity, and ability to watch, take-in, or interact. 

2. Understand health information

Ensure that health information contributes to creating both the enviornment and types of content that contribute to health literacy by checking for the the following: 

  • Clear, Simple Language: Explain treatments, conditions, and medications in simple and direct language. 
  • Personalized Content: Focus on relevancy, timing, and supporting the patient-provider journey with practical information. 
  • Visual Aids: Use diagrams and visuals to move information from abstract to real understanding. 
  • Native Language: Provide messaging in patients’ native tongue, even if bilingual.
  • Includes the Care Audience: Include caregivers and support members to help patients understand and adhere.  

3. Use information and services

Activate patient health information in marketing and comms by checking its usefulness in real world contexts. 

  • Make it Actionable: Include the next best step for your audience and ways to easily share information or get resources.  
  • Patient and Care Support: Offer support lines, peer groups, and online resources to activate information.  
  • FAQs and Question Guides: Enable communication and address concerns through FAQs and guides.  
  • Toolkits and Tools: Provide quick resources to build adherence, gain support, or address barriers. 
  • Ensure usability: Consider accessibility and barriers that may hinder understanding, actionability, or usefulness. 
  • Follow up! Motivate and engage patients and provide an opportunity for healthcare professionals and workers to “find, understand, and act” on care and adherence barriers.  

Closing Thoughts

Addressing health literacy is crucial for effective patient engagement and adherence. By using plain language, visual aids, and targeted content, healthcare professionals and marketers can bridge the gap between complex medical information and patient understanding. Implementing these strategies can lead to improved patient trust, satisfaction, and ultimately, better health outcomes. We encourage all healthcare stakeholders to prioritize health literacy in their communication efforts and take action to create more accessible and engaging patient materials.

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