Rosalind Ramsey-Goldman, MD, DrPH, relays how the Congress of Clinical Rheumatology (CCR) – East 2026 meeting addressed health literacy and its impacts on systemic lupus erythematosus (SLE) education, informed consent, clinical trial access, and patient-clinician communication. Understandable resources, culturally meaningful translation, peer support, and clinician awareness are essential to bridging communication gaps in management.

Following this presentation, featured expert Rosalind Ramsey-Goldman, MD, DrPH, was interviewed by Conference Reporter Associate Editor-in-Chief Christopher Ontiveros, PhD. Clinical perspectives from Dr Ramsey-Goldman on these findings are presented here.

What is health literacy? I view health literacy from both an oral and written perspective. If you give a patient or caregiver a written document or talk to them using medical jargon, which is frequently our default approach, you are not explaining important information in terms they understand, resulting in a health literacy disconnect between patients and their health care providers.

At CCR East 2026, the poster titled “Are Lupus Education Materials Readable? A Multi-Index Readability Analysis of SLE Patient Resources” by Ruchika Gill, MD, illustrated an important problem for people with SLE regarding available patient education resources. Although readability scores showed wide ranges across the multiple assessment tools used, 90% of the SLE patient education resources evaluated were above the recommended sixth-grade reading level for patient-facing health information. Moreover, most experts advise that these materials should be written at a fifth-grade reading level for individuals with adequate literacy skills and at a second- or third-grade reading level, including graphics as visual aids, for patients and their caregivers who have low-level literacy.

Further, if patients have low-level literacy in another language, that presents yet another problem. Since not all of our patients use English as their primary language, providers may also have to translate these resources in a culturally and linguistically meaningful way. When you give a patient instructions during a visit, they may only be half-listening to you already because they are concerned about what is going on. In addition, if you have a family member such as a child translating for a parent, or if a patient does not have anybody else in the room to translate for them, even if you provide verbal instructions or written instructions with their clinic summary and drug information, you really have not done your job. The bottom line is that we are doing a poor job of developing understandable and culturally competent SLE patient education resources.

The other area in which people with poor health literacy may be at a disadvantage is informed consent for participation in a clinical research study. Informed consent forms are generally not written at a level that is understood by many patients because they include required legal information. If you really want a patient to consent voluntarily, you have to make sure that it is translated into a version that is readable and understandable. A health literacy barrier should not be interpreted as a patient-level problem. It is a system-level accessibility problem. If patients cannot really understand the consent form, then they are not being given a fair chance to consider the risks and benefits of clinical trial participation.

For patients with lupus, understandability matters because they have to understand a complex disease, medications, symptoms, and when to call for help. Peer support and talking to other individuals with the disease can be impactful in helping patients understand their SLE. Peers may teach them the importance of coming to their appointment with a notebook in which they have written down their symptoms and any concerns about their medications. Such guidance may be offered through peer-to-peer counseling, a lupus support group, or a respected leader in the community.

You also have to develop a relationship with patients so that you can ask difficult questions. Patients may then tell you things that they normally might not reveal because they know that you respect and are truly listening to what they are saying. You have to prove to the patient that you are trustworthy. Sometimes this also may require understanding who the decision maker is in the family (because it may not be the patient) and how culture may shape the way a patient hears and acts on medical advice.

In SLE, the issue is not only that the patient needs more education. Providers also need more education, including understanding the full environment in which the patient lives. If you tell patients something that they have never heard before or that is different from the way they live, as a provider, you have to recognize this and figure out how to bridge that gap.