Epilepsy Lighthouse Project Update 2018
Over the last couple of months, the Epilepsy Lighthouse project has continued to make significant progress in its work.
For example, since Easter 2017 72 families have been screened for inclusion in PISCES bringing the total to 132 families screened.
Families are participating in the rollout of the live Epilepsy patient portal. The epilepsy patient portal can be accessed via a desktop computer, smartphone or tablet device. There are now 41 registered authorised users of the portal including patients or family members who care for someone with epilepsy. The portal allows people toview their or their family member’s summary epilepsy care record wherever they are. All portal users have had face to face design meetings with members of the Lighthouse team. This has given them an opportunity to say what they would like to see in the portal and how they think the portal can add value in the process of epilepsy care and services. Users are enthusiastic about the portal and welcome the ability to validate parts of the patient record and it puts them in better control of important health data. For example, one of the PISCES patients had a recent visit to an emergency department due to complications with a new epilepsy medication. The patient’s father was able to use the portal to share relevant clinical information with an ED doctor. Without the portal, this important information would not have been so readily available. The portal users are engaging in the PISCES project by driving continuous improvements to the technology. Patients and families provide great feedback to help make the portal more user-friendly by, for example, simplifying medical terminology and abbreviations that are displayed in the portal.
For more updates on this project, you can see the newsletters here:
Interested in working on this project or similar? There are two jobs available. To access the job descriptions, click here for the RCSI current vacancies page, and then look for the two job titles below. The actual job description files are linked to below. Both applications close on the 14th February.
1) FutureNeuro eHealth Post-Doctoral Research Position (with the SFI funded FutureNeuro Centre - Epilepsy Lighthouse project/ PISCES is working in direct partnership with the FutureNeuro Centre.)
2) Clinical Data Scientist working on the PISCES project