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LK 130
Patient-led research: the experience from putting in practice a research tool for a diabetics association
LK 130
Patient-led research: the experience from putting in practice a research tool for a diabetics association
Founder, Lumos!
Background Patients with chronic diseases and their caregivers are increasingly becoming remarkably skilled at searching for health information, making their own decisions and collaborating with others.... Read more

Description

Background

Patients with chronic diseases and their caregivers are increasingly becoming remarkably skilled at searching for health information, making their own decisions and collaborating with others. In fact, the advances in connectivity and the wide availability of data are shifting healthcare towards real patient-centeredness, and even in more rigorously scientific areas, such as research, the Patient and Public Involvement (PPI) is bound to cause a wave of transformations.

Lumos! is a web-based solution that enables teams of healthcare professionals to set up multicentric studies and facilitate online data collection from samples. It is focused on healthcare, offering specific features for such projects, and employs a holistic approach, having an integrated set of tools, which ranges from the design of a study to its supervision and coordination.

Methods

In 2012, the developing team of this solution was approached by the Federation of Diabetic Patients of the Emilia Romagna Region in North Italy. The Federation, which coordinates 21 patient associations in this Region, was interested in exploring whether this tool could be employed for a project of theirs which was scheduled to launch in 2013. Their objective was to distribute a questionnaire that studies the behavior, everyday necessities, expectations and relationship with the Health Care System not only of their members, but potentially of all the diabetic patients of the Region that are on insulin treatment and use blood glucose self-monitoring devices.

The project was launched in February 2013 in cooperation with the Regional Administration of Emilia Romagna, with a public campaign that aimed to raise awareness of the study, and is expected to be completed in June 2013.

For the purposes of this project, Lumos! has been transformed into an open public survey tool. Following discussions with the organizers of the project, specific features have been added, such as the control of the number of submitted questionnaires, the automatic creation of QR codes for the public campaign, and the ability to overview the process with the help of simple reports.

Expected Outcomes

The experience from transforming this tool for collaborative quantitative research for healthcare professionals into an instrument for patient-led projects will be discussed. For the evaluation of the implementation, data on the accesses and usage have been retrieved and analyzed from the logs.

By providing tools to patient associations in their bottom-up approach of carrying out research projects, their advocacy role will be enhanced and their members will be empowered to participate in healthcare decisions more actively. Research quality can be improved and optimized when patients partner with researchers and policy makers in setting up projects with common objectives. The results of this project are expected to lead to an evaluation of the ways of achieving higher engagement from the participants and to offer a different insight into patient involvement in research.

After graduating from the Medical School of Bologna and obtaining a Master’s degree in Alcohol-related Problems and Pathologies from the University of Florence, I have qualified as a General Practitioner, being fascinated by the holistic approach and the patient communication in Primary Care. I am the current chair of the Vasco da Gama Movement, the WONCA Europe network for trainees and junior General Practitioners / Family Physicians.

Another significant part of my life involves technology; as an enthusiast, I have tried to find ways of exploring the possibilities to improve healthcare through the implementation and integration of new technology tools. The sectors of e-health, mobile health, gamification and the social media revolution have been key sources of inspiration, leading me to co-founding Lumos!, an online platform for biomedical collaborative research.

 

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