One-third of U.S. adults have problems reading, which translates to difficulty understanding and acting on information related to their health. According to the National Assessment of Adult Literacy, only 12% of Americans are proficient in health literacy.1 That's why it's imperative for patients to not only be able to locate healthcare information, but also understand and be able to utilize the information provided. The CDC has developed a guide to aid in the creation of patient information. First steps include identifying the intended audience and their relevant health issues, and then engaging them in the development of educational material. This will improve patients' understanding and enhance their adherence to medical care.
As healthcare becomes increasingly patient-centered, patient involvement in the healthcare decision-making process through education is central to improving overall health outcomes and satisfaction. Providing patients with complete and current information helps create an atmosphere of trust, enhances patient-healthcare team relationships, and empowers them to participate in their own healthcare. Effective patient education also ensures that patients have a sufficient level of knowledge and understanding to make informed decisions regarding their care. It's becoming evident that health literate patients-those capable of making good health-related decisions or participating strongly in decision making-have better health outcomes.2
Developing high-quality patient education materials should be a collaborative effort between all members of the healthcare team, with the primary goal of increasing patient adherence to medical treatment.2 To implement effective evidence-based patient education, a variety of considerations must be made regarding patient literacy levels, the structure and design of the materials (written, audiovisual, or computer-based), and the content to be delivered. Additionally, one must consider barriers to learning, incorporate education into regular health visits, and provide follow-up to determine patients' level of understanding.
Research conducted by the Association for the Study of Medical Education identified three key priorities for educators when developing patient and public involvement (PPI) resources. These include: 1) the integration of evidence relevant to the educational content, 2) conceptual clarity through shared definitions via a unified body of literature, and 3) an academically rigorous approach to managing complexity in the evaluation of all PPI initiatives.3 This research supports the approach utilized by the National Institutes of Health (NIH) Clinical Center and exemplifies the importance of patient involvement for effectiveness.
At our facility
The NIH Clinical Center uses both a hospital/organizational and departmental/shared governance approach to patient education. The Research Participant Education Committee is responsible for developing and evaluating patient education from an interdisciplinary perspective. The Nursing Research Participant Education Committee is tasked with the design and development of patient education materials for clinical research nurses to use with their patients/research participants.
Both of these committees maintain internal websites that house committee documents for easy access by staff members. Although the nursing site mirrors the interdisciplinary site, it's designed to help healthcare professionals plan and carry out research participant education at the Clinical Center. This site also hosts reference materials such as pertinent policies; The Joint Commission standards for patient education; a submission form to request the development of new patient education; information on support, infection control, and participation in research studies; educational materials on tests, procedures, and symptom management; and links to a commercially developed database for patient education purchased through a licensing agreement. Both sites utilize a commercially available evidence-based resource for patient education materials across the continuum of care. We also utilize the National Library of Medicine's MedlinePlus, which is a publically available searchable site for patient education documents, including information on diseases, diagnostic tests, and medications; medical videos; medical research; and links to ongoing clinical trials. This site is updated daily and available in multiple languages.
Be an exemplar
As a nurse manager, you observe a nurse in your organization providing research articles to a patient about his rare disease because there's no other patient education material available. You question the nurse to verify that there are no appropriate materials and you're pleased that the nurse wasn't sending the patient home to randomly select literature from the Internet. However, as you point out to the nurse, research articles aren't ideal for patient education purposes because they aren't written for the general public. With no formal brochures available, you task a small team of experts to develop a brochure with specific information for patients with this disease and suggest that your nursing patient education committee is contacted for additional guidance.
First, the nurse team utilizes the evidence to design and develop a brochure that's written in a user-friendly format appropriate for the reading level of the general public. Next, the team utilizes its expert knowledge, the expert knowledge of the interdisciplinary team, and published research literature to develop a comprehensive pamphlet, including what's known about the disease in reference to genetics and specific risks, dietary or medication implications, resources, support group information, and frequently asked questions. After the draft is developed, it's submitted to the committee for review and also reviewed by a contractor for adherence to plain language requirements, 508 compliance, and consistent formatting. In addition, the contractor ensures that all documents are written appropriately for the public reading level.
Next, the draft is given to 10 patients as they come into your organization for solicitation of feedback regarding content, format, and readability. The final step incorporates identified changes into the brochure and makes it available for all appropriate patients visiting your organization. An ongoing evaluation continues to collect patient feedback on the design and content of the brochure, which is incorporated as appropriate. (See Table 1.)
Encouraging staff members to engage in the process of developing patient education supports professional development on multiple levels. The process allows staff members to work intimately with the interdisciplinary team and provides hands-on experience searching, summarizing, and applying pertinent evidence in support of the best patient outcomes. The engagement of staff members in this process is also an opportunity for management to recognize efforts above and beyond daily clinical care. Recognition may include release time from staffing to support completion of the project, guidance and mentorship, or a unit award or certificate for a job well done. Acknowledgement in some form from unit leadership is key to exemplify the importance of nurses' engagement in patient education and their commitment to professional development.4
Score!
The unique needs of patients are becoming increasingly complex and demand that nurses and all members of the healthcare team stay connected with patients' needs for education, understanding the impact on their health-related actions. As nurse managers, encouraging your staff to participate in the development of patient education materials fosters not only professional development, but also team integration and improved patient outcomes. Utilizing established evidence-based practices and involving nursing staff creates a win-win for your organization and your patients.
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