Uveitis.pt is an electronic medical record that supports the insertion of health data of patients diagnosed with or being treated for ocular inflammation. It is a computer platform specifically designed to allow the insertion of personal data, data obtained in consultation, in objective examination, in complementary diagnostic tests or after medical and/or surgical procedures of patients with ocular inflammation, which will be in continuous expansion. Ophthalmologists, with subspecialty in this area, were involved in its design and creation and its use is recommended at a national level.
Uveite.pt is designed to be easily accessed on any hospital computer through Microsoft Silverlight, a platform that allows Web-based applications to be used efficiently and safely. Data is collected in a standardised manner, using classification lists; there are also some free fields used specifically for note-taking.
Prospective patient registries are key tools whose purpose is the systematized entry of real-life data on the evolution of the disease, as well as the efficacy and safety of the therapies used. These records also promote a standardised clinical practice, and may be used as scientific support for clinical decision-making. Specifically within the scope of ocular inflammation, the establishment of an electronic patient registry at a national level is a way to carry out research in this area in a manner already recognised in the literature as cost-effective. In this context of national databases, similar platforms are currently in full use in the various Portuguese health institutions, namely reuma.pt (Rheumatology), liver.pt (Gastroenterology) and derma.pt. (Dermatology).
The insertion of data in this register will not duplicate the usual procedures for performing medical records in consultation, i.e., the doctor or does not have to record data obtained in consultation in the system already adopted by this health institution where he works and consecutively in Uveíte.pt. In this sense, this IT platform has a tool that allows exporting information to the medical record system, without duplicating procedures.
Some functionalities made possible by this register are exemplified in the Clickable PDF and include the possibility of generating reports, tables and graphs on patient evolution, organized access to current and previous therapy, access to organized data on surgeries, injections, etc.
Individual doctors can only view data on patients from their own institution, as is already the case in the computer systems currently adopted by health institutions. Patient data from other institutions is hidden and can only be extracted in an authorized, aggregated and anonymous way within the scope of a scientific study previously approved by the Uveite.pt Coordinating Committee. Data provided cannot be used for other purposes, objectives or analyses that are not contemplated in the approved proposal.
In order to start data entry for a patient for the first time, it is mandatory that the treating physician explains to the patient what this participation consists of, as well as obtaining informed consent signed by the patient or his/her legal representative. If the patient agrees to participate, they may at any time change their mind and decide not to participate. In that case, their data will not be used any further. The use of this register has already been previously approved by the National Data Protection Commission (authorization no. 4206/2018 issued on 30-03-2018).
We thank you in advance for your attention to this matter and we are entirely available to provide any clarification that you may consider necessary. If your Centre/Department would like to participate in this register (in your Service only one or all physicians - internists or specialists - who intend to register patients diagnosed with ocular inflammation of any nature) or if you simply wish to know more about it (submission of documents that may serve as a basis for requests to the local Ethics Committee, as well as the individual forms to be filled out by each of the physicians who wish to join the project), please contact inescardosoleal@gmail.com.
Yours faithfully,
Uveite.pt Coordination Commission
Luís Figueira, Vanda Nogueira, Inês Leal
