BACKGROUND
Patients are key stakeholders in medical decision-making, and there is a growing emphasis on patient empowerment. The website midolordecabeza.org promotes the participation of patients with migraine with the aim of organizing the information on headache, including the latest research, making it accessible and useful for all stakeholders. Digital tools in chronic disorders help to empower patients and foster patient-centered outcomes research.
OBJECTIVE
To validate the social impact of midolordecabeza.org, by analyzing the activity on the web and analyzing users’ needs through open surveys.
METHODS
We analyzed using Google Analytics the web activity, geographical distribution of access, social behavior, electronic devices performance and temporary references with greater web activity. We also conducted open surveys focused on: (1) the impact of migraine, (2) the strategies they use to cope, (3) the answers they are looking for (4) and the solutions that they find.
RESULTS
From January 2015 until December 2019, the website registered 1,091,043 users; 1,728,118 visits and 3,715,416 page views with an average time per session for nearly two minutes. This implies an average annual increase of 10.8% of users, 13.4% of visits and 8.0% of views. Higher data traffic has been registered in Spanish-speaking regions such as Spain (29.7%), Mexico (16.0%) and Argentina (14.5%). In regards to social behavior, 75.8% of accesses were performed via mobile phone. Statistically significantly usage is registered during the spring and in the evening (8-11 pm). Users are 76.1% women, between 25 and 54 years old (71.0%); 71.5% describe their migraine as a disabling disease with the presence of anxiety and depression. 59.4% ignore their type of headache and 51.8% do not have any medical follow-up. 66.7% do not know how to anticipate to their migraine attacks and 61.5% feel stigmatized. 73.8% of patients feel dissatisfied with current therapeutic methods.
CONCLUSIONS
Migraine promotes an excellent research environment for the development of digital platforms due to its high prevalence, high socioeconomic impact, concerns about current treatment and easy access to the Internet. Patient-centered outcomes research platforms improve communication among medical communities and drive patient empowerment.