OBJECTIVES: Research into patient education and activation suggests that patients who feel well informed and empowered to participate in conversations with their healthcare team have improved health outcomes.

Traditionally, formal patient education has been limited to materials available to the healthcare professional attending to the patient and the Patient Information Leaflet accompanying a prescribed treatment.

Patient, caregiver and advocacy involvement in the co-creation of treatment-related and disease education support materials is considered the gold-standard for creating any disease-related treatment support and is now an industry-wide practice.

The aim of this research was to determine the patient-reported preferences of disease-related patient support materials, highlighting the proportion of material requested in the areas of medical information, treatment-related information, additional or peripheral support and psychological support.

METHODS: The authors explored nine cases conducted in collaboration with industry partners over the past year which involved activities gathering direct preference feedback by patients or caregivers. Projects without direct patient involvement were excluded.

RESULTS: When given an opportunity to feedback on disease awareness or treatment-related support materials, patients and caregivers report a need for a vastly wider range of content provision than the outlines initially presented, particularly in the case of paediatric patients and children of adult patients.

Key unmet needs included: Disease education specifically tailored to a newly diagnosed population, such as treatment options of side effects; details of what to expect as their disease progresses and how to find appropriate clinical trials; and practical guidance on self-management and accessing support beyond their immediate healthcare team.

CONCLUSIONS: Industry-sponsored activities engaged the patient preference across all requests wherever possible. Ensuring that patient and caregiver input is built into the planning phase of all patient support materials may help to improve education, comprehension and adherence to the support provided.