Information needs and research priorities in long‐term survivorship of breast cancer: Patients and health professionals' perspectives

León‐Salas, Beatriz; Álvarez‐Pérez, Yolanda; Ramos‐García, Vanesa; Trujillo‐Martín, Ma. del Mar; Medina, Ana María de Pascual y; Esteva, María; Brito‐García, Noé; González‐Hernández, Nerea; Bohn-Sarmiento, Uriel; Biurrun‐Martínez, M. Concepción; Serrano‐Aguilar, Pedro

doi:10.1111/ecc.13730

Cited by 1 publication

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References 63 publications

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“…Women in this study pointed out information needs concerning different stages of the cancer, from diagnosis to long-term follow-up, as shown in previous studies [37,38]. Increasingly, these patients want to be involved in the decisions related to their health, and some studies have focused on involving the patient experience to improve the healthcare they receive [31,39].…”

Section: Discussionmentioning

confidence: 53%

Digital Health Literacy and Person-Centred Care: Co-Creation of a Massive Open Online Course for Women with Breast Cancer

Álvarez‐Pérez

Duarte-Díaz

Toledo-Chávarri

et al. 2023

IJERPH

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The diagnosis of breast cancer (BC) can make the affected person vulnerable to suffering the possible consequences of the use of low-quality health information. Massive open online courses (MOOCs) may be a useful and efficient resource to improve digital health literacy and person-centred care in this population. The aim of this study is to co-create a MOOC for women with BC, using a modified design approach based on patients’ experience. Co-creation was divided into three sequential phases: exploratory, development and evaluation. Seventeen women in any stage of BC and two healthcare professionals participated. In the exploratory phase, a patient journey map was carried out and empowerment needs related to emotional management strategies and self-care guidelines were identified, as well as information needs related to understanding medical terminology. In the development phase, participants designed the structure and contents of the MOOC through a Moodle platform. A MOOC with five units was developed. In the evaluation phase, participants strongly agreed that their participation was useful for the MOOC’s development and participating in the co-creation process made the content more relevant to them (experience in the co-creation); most of the participants positively evaluated the content or interface of the MOOC (acceptability pilot). Educational interventions designed by women with BC is a viable strategy to generate higher-quality, useful resources for this population.

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