An Online Platform as a Tool for Surveys by Patient Associations

Patients are increasingly interested in sharing their experiences and learning about their conditions, their prevention and treatments, and are more frequently turning into advocates. The connectivity and the wide availability of data have been shown to support this development enabling patients to play an active role in healthcare. The “Lumos!” platform is a web-based solution that has been designed to facilitate teams of researchers conducting multicentre studies, especially in countries and contexts with low research capacity. Nevertheless, it can be modified and tailored as a tool for research studies carried out by patient organisations. The aim of this study is to assess the feasibility of an online platform as a tool for anonymous surveys conducted by a patient organisation.
Methods: A questionnaire is currently being distributed in the Region of Emilia Romagna (Italy) by the Regional Federation of Diabetics with the aim to study the needs of patients that use self-check-up devices. This observational study has been designed online with the use of the “Lumos!” platform, which enables the creation of the questionnaire with adjustable fields and variables, using the expertise of the participants and the creation of reports. Furthermore, a URL and a QR code linking to the questionnaire are being published on Social Networks and websites inviting people to participate in the study. Several data will be retrieved from the logs of the platform, such as the time required to complete a questionnaire by a patient, the number and types of errors, and the percentage of completed items. These variables will be analysed taking into account the demographic characteristics of the patients.
Conclusions: By studying the indicators of the implementation and the characteristics of the participants, it will be possible to optimise participation rates and achieve higher engagement from the participants in the future. We expect that with the help of the online platform, patient associations will be supported in their quest to conduct surveys and, as a secondary outcome; they will empower their members to play a more active role in healthcare.