Employing an Online Survey Platform for a Patient Association Campaign

Charilaos Lygidakis* Silvio Cambiaso*
Mauro Melis*
Charilaos Lygidakis*, Lumos!, Bologna, Italy
Claus Vögele, Unité de recherche INSIDE, Université du Luxembourg, Luxembourg, Luxembourg
Silvio Cambiaso*, Lumos!, Bologna, Italy
Mauro Melis*, Unità di Farmacologia Clinica e Sperimentale, University of Bologna, Bologna, Italy
Nicola Masella, Lumos!, Bologna, Italy
Rita Stara, Federazione Diabete Emilia Romagna, Cento, Italy

Track: Practice
Presentation Topic: Consumer empowerment, patient-physician relationship, and sociotechnical issues
Presentation Type: Rapid-Fire Presentation
Submission Type: Single Presentation

Building: Mermaid
Room: Room 2 - Aldgate/Bishopsgate
Date: 2013-09-24 02:00 PM – 03:30 PM
Last modified: 2013-09-25

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The advances in connectivity and the wide availability of data are shifting healthcare towards a more patient-centred model, in which patients are increasingly interested in sharing their experiences, learning about their conditions and participating in the healthcare decisions actively.

The web-based “Lumos!” platform can be employed not only by teams of researchers conducting multicentre studies, especially in low research capacity contexts, but also by patient associations as a tailored and accessible tool for surveys.

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.

The Federation of Diabetic Patients in cooperation with the Regional Administration of Emilia Romagna in the northern part of Italy, are inviting diabetics and their caregivers to participate in an online survey. The questionnaire explores their feelings, expectations and needs, considering particularly those who use self-check glucose devices and are on insulin treatment. The project was launched in February 2013 and will be completed in June 2013.

The study has been designed on the "Lumos!" platform which offers the possibility to establish multiple cohorts for different groups of users and supports the creation of follow-ups should this become necessary in the future. A URL and a QR code linking to the questionnaire have been produced and published on Social Networks and websites, and distributed with the advertisement material of the Public Health and awareness-raising campaign. The coordinators of the study are monitoring the process with the help of reports and an overview dashboard.

For the purposes of the evaluation of the platform, data will be analysed from the logs of the platform, including the time employed by a user to complete a questionnaire, the number and types of errors, the percentage of completed items, the number of required fields that were omitted while trying to submit the questionnaire, and the website or Social Network from which the visitor entered the survey. The findings will be also cross-analysed in relation with the demographic characteristics of the sample.

Expected Results
The results of this study can lead to an evaluation of the ways of achieving higher engagement from the participants in the future. Moreover, patient associations will have a tool that may open a new path for collaborative studies between them and healthcare professionals.

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