Background and Importance In rare diseases such as haemophilia, the access to rigorous information is essential.
Aim and Objectives To describe the virtual desktop developed by our pharmacy service for haemophilia patients. It includes shortcuts to selected resources. The aim is to facilitate quick, free and easy access to information about the disease and its treatment.
Material and Methods The tool selected to create the virtual desktop was Symbaloo® (symbaloo.com), which brings together in one place the selected links to useful and rigorous websites. It has been organised in colour -coded sections according to the type of information offered in each block. The name of the virtual desktop is ‘Haemophilia for patients’.
Results The desktop has a total of 43 web links organised in 16 blocks belonging to 8 sections:
Introduction to haemophilia.
Regional, national and international haemophilia associations and a list of national treatment centres.
Advice on sports and lifestyle habits in haemophiliacs.
Document for the haemophiliac traveler.
Treatments: patient leaflets, self-infusions and individualised treatment.
Information sheets from our pharmacy service.
This is a dynamic desktop that is updated with news and improvements to adapt it to the patient‘s needs. The link to access our virtual desktop is: https://bit.ly/HEMOPHILIA.
A web prescription sheet was also designed with a QR code to be scanned with the patient‘s cell phone to facilitate the access, including instructions for using the desktop and the pharmacist’s contact information.
Conclusion and Relevance Symbaloo is a potentially useful digital platform for providing quality information and useful web resources to haemophilia patients. Healthcare professionals can, and should, provide our patients with useful digital content that allows them to learn about the management of their disease. Through these online tools, patients‘ digital health literacy can be improved.
Conflict of Interest No conflict of interest
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