The impact of a digital platform on migraine patient-centered outcome research. Evaluation of midolordecabeza.org, a headache website in Spanish
Victor J Gallardo 1 , Alicia Alpuente 1 2 , Xim Cerda-Company 1 , Marta Torres-Ferrus 1 2 , Margarita Sanchez Del Rio 3 , José Miguel Lainez 4 , Rogelio Leira 5 , Jérôme Trochet 6 , Patricia Pozo-Rosich 1 2
Objective: This internet survey aimed to analyze the activity of midolordecabeza.org, a specialized website for headache stakeholders.
Background: eHealth tools, such as websites, can be educational for stakeholders of a specific disease, such as patients. This is particularly helpful in chronic disorders such as migraine. eHealth also enhances patient-centered outcome research.
The website midolordecabeza.org has the stated aim of organizing key information on headache making it accessible and useful for all stakeholders, and, eventually promoting patient participation.
Methods: We analyzed Google Analytics (GA) data to study the web's activity, traffic source, geographical distribution of access, registered-user behavior, electronic device performance, and temporary references with greater web activity.
Results: From January 2015 until December 2020, the website registered 1,121,585 visitors, 1,775,953 sessions, and a total of 3,833,144 views with an average time per session of nearly 2 min. Higher data traffic has been registered in Spanish-speaking countries such as Spain (33.3%; 591,256/1,775,953), where Spain's regions with higher views were statistically significantly correlated with the nationwide migraine prevalence (ρ = 0.505; p = 0.039).
In regard to social behavior, returning users were statistically significantly associated with being a woman (84.0%; 5696/6781), and they predominantly acceded from organic searches (50.6%; 3434/6781). When answering available open surveys, 72.5% (1827/2520) described their migraine as a disabling disease with high impact on their daily tasks and 64.4% (14,016/21,764) were unaware of what their headache diagnosis is.
Conclusions: Spanish-speaking patients with migraine around the world increasingly visited the headache-specialized website midolordecabeza.org using different electronic devices, showing great interest in their disease. This website allowed them to get updated information on their disease, share clinical data with physicians, and finally express their concerns.
CITATION Headache. 2021 Oct;61(9):1403-1410. doi: 10.1111/head.14225. Epub 2021 Oct 3.