Patient engagement is often treated as a matter of giving patients more information but the 2026 research suggests that information alone is not enough.
Patients are more likely to feel engaged when education is clear, relevant, practical, easy to revisit, and connected to a real way to ask for help. The results of the following five studies provide an analysis of patient engagement in 2026 thus far.
1) Evaluating A Patient-Led Health Literacy Program for People Living With Metastatic Breast Cancer
This study evaluated a virtual health literacy program led by people living with metastatic breast cancer.
Before the program, 43% of participants agreed that they did not know enough to make their own medical decisions. After the program, that number fell to 13%. More than 80% also said their confidence in self-advocacy, health literacy, and sense of community improved.¹
What the Findings Suggest:
The program did not significantly increase knowledge scores, but it did improve confidence. That suggests patient education may be most useful when it helps people make sense of information and feel prepared to take part in decisions, not simply when it gives them more facts.
2) Health literacy in patients with epilepsy: a narrative review of current status, influencing factors, and future directions
This narrative review examined the factors that shape health literacy among people with epilepsy.
The authors identified age, education, cognitive function, family and social support, and access to healthcare resources as major influences on how patients understand and manage their condition.²
What the Findings Suggest:
Patient education cannot be one-size-fits-all. The same material may work very differently depending on the patient’s cognitive needs, support system, and access to care. Education is more likely to be useful when it reflects the patient’s real-life circumstances.
3) An Exploration of the Intersection of Clinical Trials and Health Literacy: A Scoping Review
This scoping review examined 25 studies on health literacy and clinical trial participation.
The review found that health literacy affects how well patients understand trial procedures, risks, randomization, time requirements, participant rights, and the fact that participation is voluntary.³
What the Findings Suggest:
Complex trial materials can make it harder for patients to make a truly informed decision. Clearer explanations may improve understanding and comfort, especially for people with limited education or English proficiency. However, the review does not prove that simpler materials alone will increase trial enrollment.
4) Automated Health Care Messages and Unexpected Patient Responses
This study analyzed replies to automated text messages sent by Kaiser Permanente Colorado.
Among 38,395 patient replies, 43% were placed in a “no action” category because the system did not recognize them as valid commands. Patients were trying to ask questions, change appointments, correct information, communicate preferences, and request help.⁴
What the Findings Suggest:
Patients often treat automated messages as the start of a conversation, even when the system is only designed to send information. Healthcare organizations should clearly explain whether replies are monitored and provide an easy path to a real person when the technology cannot help.
5) Promoting engagement in patient-initiated follow-up and self-care behaviours: acceptability of the ‘ACT now & check-it-out’ intervention for head and neck cancer (PETNECK2 study)
This feasibility study examined a support program for patients managing follow-up after head and neck cancer treatment.
Most patients and healthcare professionals found the approach acceptable. Many patients also developed new self-care habits after receiving education and practical demonstrations, including how to perform a self-examination.⁵
Some patients still felt anxious about recurrence, unsure about examining themselves, or uncomfortable without scheduled appointments.
What the Findings Suggest:
Patients may be able to take a more active role in follow-up when they are shown exactly what to do. But self-management still needs a safety net. Patients need clear signs to watch for, guidance on when to seek help, and reassurance that the care team is still available.
The Overall Takeaway
Across all five studies, the same pattern appears. Patients need more than information. They need education that is understandable, specific to their situation, easy to return to, practical to use, and supported by a clear way to ask questions.
The strongest lesson from the 2026 research is that patient engagement improves when communication helps people feel confident about what comes next.
References
¹ Taffe BD, Beumer A, Glenn L, Lustberg MB, Roberson ML. Evaluating A Patient-Led Health Literacy Program for People Living With Metastatic Breast Cancer. Cancer Control. 2026;33:10732748261465064. doi:10.1177/10732748261465064.
² Wen N, Wang R, He Y, Jiang Q, Peng J, Feng L. Health literacy in patients with epilepsy: a narrative review of current status, influencing factors, and future directions. Frontiers in Neurology. 2026;17:1885747. doi:10.3389/fneur.2026.1885747.
³ Lawrie K, Rashev M, Mardini A, et al. An Exploration of the Intersection of Clinical Trials and Health Literacy: A Scoping Review. Journal of Health Care for the Poor and Underserved. 2026;37(2):466–492. doi:10.1353/hpu.2026.a992761.
⁴ Mueller SR, Kraus CR, Duckro AN, et al. Automated Health Care Messages and Unexpected Patient Responses. JAMA Network Open. 2026;9(6):e2617740. doi:10.1001/jamanetworkopen.2026.17740.
⁵ Matheson L, Watson E, Fulton-Lieuw T, et al. Promoting engagement in patient-initiated follow-up and self-care behaviours: acceptability of the ‘ACT now & check-it-out’ intervention for head and neck cancer (PETNECK2 study). BMJ Open. 2026;16:e099993. doi:10.1136/bmjopen-2025-099993.