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April 22 2020

Clinical Patient Management System – latest updates!

Vascular Anomalies Working Group Monthly Case Discussions 1

After almost 2.5 years of operation, we thought it was a good time to give an update on the progress of the Clinical Patient Management System (CPMS) and its implementation in the various VASCERN Rare Disease Working Groups (RDWGs).

We currently have 72 users registered in the CPMS and all RDWGs have opened panels to discuss complex clinical cases. A total of 49 panels have been opened and 21 of those have been completed.

Ibrahim Donmez, our IT Helpdesk & End User Support Specialist, attended the 7th ERN IT Advisory Group Meeting that took place online on Tuesday 31st of March 2020.

Discussion topics included the following;

  • CPMS Year 2 Survey Analysis findings

The survey was conducted to determine the use of CPMS and gain feedback for further improvements. The learning outcomes from the survey clearly indicate that the “principle” of the current system is appreciated, as it allows clinicians to exchange information about rare disease patients in a safe and secure environment. The secure exchange of medical data across borders in a highly protected environment is appreciated. However, the “shape” of the current system does not meet the needs of users. Clinicians do not want to invest time in the CPMS as it is currently proposed with the least liked element being the panel workflow. It is evident that the way in which the “panel” was set up does not meet the approval of the respondents as it’s too time-consuming and users pointed out that the system is too complex and not intuitive enough. The majority of users indicated that they have not loaded medical documents and this is due to the feeling that it’s not suitable for them.

  • CPMS Workflow Revision

Following the IT Advisory Group meeting held in April 2019, it was agreed that the CPMS Workflow should be improved in order to offer a simpler workflow. As a result, a new workflow of CPMS has been proposed and the implementation will be finished around September 2020. The analysis of these changes involved the ERN CPMS local help-desks, CPMS provider, OpenApp, and DG SANTE (B3 and A4). The CPMS 2 year Survey results were also considered in this revision.

This request for change includes five

  1. Review consultation request and enrolment in patient form
  2. Review CPMS workflow for a shorter workflow
  3. Review timeline messages
  4. Forwarding a panel with customised dataset
  5. Access to panel members contributions when writing outcome
  • Covid-19 Dataset

Due the current pandemic faced, the ERN IT Team decided to add a Covid-19 dataset into the CPMS in order to help the 24 ERNs during this pandemic. This is in addition to the specific covid-19 clinical management system that was equally launched on March 24th, 2020

We look forward to these changes in September which will simplify the CPMS and allow our healthcare professionals to use the system more efficiently.

For more information on the CPMS, or for any other assistance, please refer to our CPMS page here.

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