5 Common Barriers to Patient Education and How to Overcome Them

Why is patient education important?

Educating patients is an important pillar of strong healthcare systems, since knowledge empowers people to better understand their health status and actively participate in the management of their health. Knowledge further supports individuals in making informed decisions and taking proactive and self-motivated steps to improve their health.

Patient education is also essential in clinical research, since participants should be fully aware of what a study entails before deciding to join. Further, having a solid understanding of their condition and the study protocol helps promote a sense of engagement, in addition to generally improving adherence to the study protocol. We will discuss patient education in the specific context of clinical research in the next sections.

In a broader sense, patient education leads to educated patients, who play an integral role in effective healthcare landscapes through a variety of means, such as:

1. Empowerment: Patient education offers individuals the chance to equip themselves with the knowledge and skills necessary to take control of their health, manage their conditions, and actively participate in making health-related decisions with their healthcare provider(s). In the clinical research context, knowledge empowers patients to find trials that might be a good fit, and to make well-informed decisions about participating. In general, knowledge can help patients feel comfortable in their ability to understand the clinical trial and feel more secure as they navigate new steps in their health journey.

2. Increased patient engagement and satisfaction: Informed patients are more likely to feel more engaged in their care and communicate more effectively with healthcare providers. This can foster trust and understanding between patients and clinicians, leading to higher satisfaction with aspects of health services as the patient feels seen and understood. In clinical trials, educating patients about the value of their contribution can also help them feel appreciated.

3. Prevention and early intervention: Educating patients includes improving awareness of risk factors for and early warning signs of certain diseases. This not only encourages individuals to take preventive measures, such as making lifestyle modifications or undergoing routine screenings, but can also significantly improve early detection efforts as patients know what signs or symptoms may require further assessment. Thus, this aspect has influences at both the individual and the broader societal level. Early detection of disease by recognizing typical early warning signs supports timely intervention, which is almost always correlated with better health outcomes, and in turn, a lower societal health burden.

4. Treatment adherence and support: When patients are well-educated and informed about their condition, the treatment options available, self-management techniques, and any medications they’re taking (including considerations such as storage, route of administration, and dosing schedules), they are more likely to adhere to prescribed treatments plans and take proactive measures to support its efficacy, which can lead to better health outcomes. It also empowers them to self-monitor for potential side effects or changes in symptoms, which helps physicians gain deeper insights into the patient’s treatment response and make more informed care decisions.

5. Cost-effectiveness: Patients who are well educated in health are less likely to require unnecessary healthcare services or emergency visits due to preventable complications, missed medication doses or accidental overdoses, etc. They are also less likely to cause delays or setbacks in clinical trial timelines due to missed visits, drop-outs, non-compliance, etc. (whether intentional or not), since they volunteer to participate in the study based on a thorough and conscious understanding of what will be required of them.

Patient education topics relevant to clinical trials

Within the context of clinical trials, patient education takes a somewhat different focus, centered on ensuring that participants fully understand the study’s purpose and research objectives, the procedures involved, what is required of them, potential risks and benefits, their rights as research subjects, and privacy concerns related to personal data collection and usage. Most of this information must be conveyed as part of the informed consent process, which includes an interactive confirmation that the patient has understood the information presented.

However, patient education goes beyond the informed consent process, and can continue throughout a trial and after a trial. It also occurs on an ongoing basis at the level of the broader community, with different aims such as addressing barriers to health literacy and increasing awareness about clinical research participation, early warnings signs and prevention of diseases, and other topics that generally improve the health awareness of citizens.

Thus, depending on the study design, therapeutic area, patient population, and the particular intervention involved in the study, patient education in relation to a particular clinical trial might focus on conveying one or more of the following topics:

- The objectives of the study and the overall purpose of the research

- Trial design (i.e., what is being investigated and how it’s being compared)

- Procedures/tests/examinations involved in the study

- Potential risks & side effects associated with the investigational drug/intervention under study

- The importance of protocol compliance and following instructions for medication/treatment administration

- Individual rights as a volunteer study participant

- Safety monitoring measures in place

- Criteria for monitoring and reporting adverse events (AEs)

- Data confidentiality and privacy policies & regulations protecting the patient’s data

- Follow-up requirements & commitment

Patient education could also encompass broader education about clinical research in general, focusing on topics such as:

- The informed consent process and understanding how clinical trials work

- Research participants’ rights

- Diversity in clinical research studies

- New developments and emerging research questions/directions

Patients should be provided with resources and materials in clear, nontechnical language to ensure that they comprehend the study and are equipped with the necessary knowledge to make an informed decision about participating; more on this in the next sections.

What factors could block effective patient education?

Several factors can hinder effective patient education, both from the side of the educator and the receiver, including differences and limitations in health literacy, language barriers, social and cultural differences, learning styles, time constraints, and the cognitive and emotional state of the patient.

Addressing these diverse barriers requires flexible approaches that can be tailored to the needs of individual patients, regions, or subpopulations. Let’s dive into some ideas of how to overcome these barriers to patient education.

Overcoming 5 common barriers to patient education: Health literacy, language, culture, different learning styles, and physiological obstacles

1. Health literacy

Health literacy refers to an individual's ability to understand basic health and medical information and make informed decisions related to their health and healthcare journey. Low levels of health literacy can hinder patient education efforts as patients may struggle to comprehend even relatively simple medical concepts or follow treatment instructions properly. We’ve written an article on health literacy month that goes into further detail about the importance of health literacy. Broadly, health literacy can differ drastically both within and between patient populations/demographics and geographical regions due to a multitude of factors including the local social and educational systems and access to health services, but it is not necessarily correlated with education levels.

To accommodate low levels of health literacy, study materials – from promotional and outreach materials through to consent forms and medication reminders – should be written using plain language, avoiding medical jargon and breaking down information into simpler terms or providing further explanation. Visual aids, such as diagrams or illustrations, can also enhance understanding. Encouraging active engagement through interactive discussions and providing opportunities for patients to ask questions can further improve comprehension. Asking participants to explain concepts back is another great method of confirming understanding.

2. Language barriers

Language barriers present challenges in patient education, particularly in broad multi-region educational campaigns or international trials, as patients may have difficulty understanding medical terminologies or accurately interpreting information provided in a language that is not their mother tongue. It is almost always a good idea to work with a local healthcare or clinical research professional to make sure that materials are likely to be well-received in the target region. When language translation is necessary, accurate translations done by professionals with knowledge in the therapeutic area are vital for preventing misunderstandings. However, beyond straight translation, “localization” services for each target region may be more appropriate, as this also encompasses incorporating cultural sensitivities and nuances, even to the local and regional levels (see next point).

3. Socio-cultural factors

Socio-cultural factors also influence how individuals perceive and assimilate health information. Cultural beliefs and practices can shape attitudes towards healthcare and affect patient learning. Further, past experiences with healthcare services and clinical research heavily shapes current perceptions toward these fields at both the individual, group, and societal levels, and it is important to try to understand negative (or inaccurate) perceptions in order to address their concerns in an empathetic manner.

Understanding the influence of cultural beliefs on patient learning enables trial sponsors and healthcare providers to tailor educational strategies accordingly. This can include recognizing cultural and regional nuances when wording study documents, considering particular sensitivities and religious considerations when discussing certain topics, and incorporating culturally relevant examples into educational materials. Building trust through culturally sensitive communication is vital for effective education, as people are more receptive to information when they feel that they are understood and being spoken to directly.

4. Divergent learning styles

It is known that there are different learning styles, reflecting the way in which individuals process and retain information most effectively – these are usually categorized primarily into visual, auditory, and kinesthetic learning. This presents an obstacle in developing a one-size-fits-all approach to patient education.

To address divergent learning styles, it may be a good strategy to develop flexible education campaigns that utilize various teaching methods. This can include the frequent use of supplementary visual aids to resonate with visual learners, audio recordings of written text or person-to-person discussions for auditory learners, and interactive demonstrations or hands-on activities for kinesthetic learners. While this may not be feasible in all types of communications, providing multiple formats of educational materials whenever possible in consideration of these individual differences can help make sure your message reaches a diverse audience.

For example, some people may best retain information they read in a visuals-heavy research flyer they pick up in their doctor’s office, while a YouTube video summary of the trial may speak better to other potential participants.

5. Physiological obstacles

Physiological factors such as age-related cognitive changes, memory difficulties, physical disabilities, and differences in awareness can also present obstacles in patient education. To overcome physiological obstacles in patient education, it would be ideal to understand the target population at the individual level in order to adopt appropriate strategies. This may be easier for a given trial, but is more of a difficult feat for broader educational campaigns targeting the general population.

Ideas for improving accessibility of educational materials and trial information include:

• Repeating and reinforcing key information to aid memory retention
• Providing written materials for reference after the educational session which patients can review at their own pace
• Using assistive technologies or alternative formats for patients with physical disabilities (speech-to-text/text-to-speech, audio recordings, etc.)

Tying it all together: General strategy for addressing barriers to patient education

Overall, being aware of these common barriers to patient education and taking them into consideration when developing patient education programs or study materials is a good starting point. Reflecting on these potential challenges together with an understanding of the target population and their unique needs further supports effective communication of information on a case-by-case basis.

Accounting for the relevant barriers enables healthcare providers, trial sponsors, patient advocacy organizations, and other health stakeholders to communicate effectively to diverse populations, eliciting potential beneficial effects such as encouraging diversity in study populations, raising levels of health literacy, and promoting better health outcomes through the power of knowledge and engagement.

Addressing barriers to patient education of the elderly

In elderly populations, patient education presents a unique set of challenges and barriers related to aging, such as:

1. Cognitive changes: Age-related cognitive decline and memory difficulties can impede learning and the retention of new information. Information can be repeated, and patients can be given a physical copy of the topic discussed to bring home and review periodically to improve retention and understanding.

2. Sensory impairments: Visual impairments and hearing impairments can affect an individual’s ability to comprehend written materials or hear instructions clearly. Visual or auditory aids, or personal support by a caretaker familiar with the patient’s health status are potential ways to improve communication in such cases.

3. Changing trends and health literacy: Since both science and healthcare are fields that evolve rapidly, some older adults may not be familiar with certain aspects of the current healthcare landscape, particularly more modern developments, which could make it more challenging to understand certain information, medical concepts, aspects of clinical trial design, etc. This is particularly relevant in regards to new technologies. Being patient and making a conscious effort to be supportive in helping the patient understand the information presented, acknowledging that it may be foreign to them, can go a long way toward assisting comprehension, beside helping the patient feel comfortable.

4. Technological barriers: Similarly to the previous point, many elderly people may have limited familiarity with modern technologies and digital tools, which can create significant obstacles in accessing online educational resources (including recruitment materials), interacting with online forms such as eConsent, learning to use wearable devices, using patient portals, etc. Consider providing paper-based alternatives to electronic documents, activating/integrating accessibility features in the systems, or offering an appointment with a study team member for anyone who might need or appreciate direct assistance navigating the online platform.

Most of these barriers can be overcome by providing dedicated assistance or by providing alternatives that are tailored to the specific circumstances of elderly patients. For example, a broader education campaign aimed at increasing the participation of elderly patients in clinical research may be best disseminated verbally through primary care physicians, since this demographic is likely more comfortable receiving information in person through a trusted healthcare professional. A study employing eConsent could provide paper-based ICFs for elderly participants, or could assign a staff member to walk through the electronic informed consent process with those individuals and assist them with the technological aspects.

Addressing education barriers that are particularly relevant to the elderly patients could also consist of using larger text and/or supplementary visual aids, providing materials in written form, explaining concepts in extra detail and repeating them, verbally confirming understanding, providing paper-based reference sheets/summaries after educational sessions, and engaging caregivers or family members to help with understanding and provide emotional and functional support.

Patient education technology

Accelerating advancements in technology over the last few decades have opened up new avenues for enhancing patient education, both in the context of clinical trials and in healthcare in general. There are various technological tools that can be employed to improve the efficacy of information delivery as well as patient engagement:

Mobile apps

Mobile apps provide a convenient platform for delivering educational content directly to patients' smartphones or tablets. By delivering information in this way, educators can take advantage of highly interactive features, notifications and reminders (for medication schedules, study visits, etc.), social aspects (connecting with friends and sharing information), gamification (making a game out of the learning journey, hosting contests, etc.), and simplified linking to additional external resources. However, accessibility must be taken into account – although the prevalence of mobile phones is widespread, access to smartphones and internet access is not universal.

Online platforms and websites

Websites and online platforms allow researchers to communicate relevant study information with participants through readily accessible portals. Web resources can host a variety of multimedia content such as videos, audio recordings, infographics, and FAQs, to cater to all learning styles, as well as discussion forums which can facilitate engagement and communication among trial participants. There are also endless possibilities for outreach and increasing exposure and dissemination of health information via online advertising campaigns, search engine optimization, etc. Again, accessibility must be taken into account since there areas with little or no infrastructure or access to an internet connection. In such areas, online resources may not be appropriate for a clinical trial, although it might be feasible to provide patients with devices for the duration of a trial or set up local internet access points.

Virtual reality (VR) and augmented reality (AR)

VR and AR technologies enable immersive educational experiences by creating virtual environments that simulate real-life scenarios related to disease conditions, treatments/procedures, etc. This approach can be particularly engaging and can help patients better visualize concepts, enhancing comprehension by activating more senses and reducing distractions.

Telemedicine

Telemedicine platforms use combinations of phone calls, video conferencing, and remote monitoring capabilities to facilitate virtual consultations with healthcare providers. In the context of a clinical trial, patients could be supported by 24/7 access to a support team for trial-related issues, which allows for personalized patient education, counseling, and clarification of any questions or concerns regarding the clinical trial and its various aspects (i.e., procedures, wearable devices being used, medication schedules, etc.). This has the added benefit of enabling faster identification of adverse events and quicker responses to patient safety concerns.

Conclusion

Patient education is one of the core pillars of a well-functioning healthcare system, since educated patients are better equipped to act as partners in preventing and detecting disease, adhering to treatment plans, taking proactive measures to improve their outcomes, and spreading useful information within their communities. Patient education is not any less important in clinical trials, where it has direct influences on patient engagement and retention, protocol adherence, patient safety, and trial quality.

By understanding and addressing common barriers to patient education, outreach campaigns and informative materials can be customized to meet the unique needs of diverse patient populations. Leveraging technological tools like mobile apps, online platforms, and telemedicine systems provides opportunities for further enhancing the accessibility and effectiveness of patient education efforts. Through tailored approaches, patient education can empower individuals of diverse backgrounds to make informed decisions about their health and their participation in a given clinical research study. On a broader level, breaking down the barriers to health education and promoting health knowledge can improve prevention and early detection of diseases, address misconceptions and distrust in healthcare systems, enhance participation in clinical research, and generally improve health outcomes as patients become more empowered and take a more active role in their health journeys.