What is the Epilepsy Lighthouse Project?
In 2016, Health Service Executive (HSE) selected the national epilepsy electronic patient record (EPR) as a Lighthouse Project to demonstrate how eHealth technologies can help improve quality and safety in delivery of health care. The lighthouse project is called "Providing Individualised Services and Care in Epilepsy (PISCES)". PISCES is a nationwide project and is using the epilepsy EPR to bring three new developments into clinical care of people with epilepsy. These developments which can improve diagnosis and treatment are:
- Genomic Medicine
- Electronic Patient Portal
- Data Analytics
eHealth and Epilepsy
eHealth is a term used to describe the use of information and communication technology to support the delivery of healthcare and services. Electronic patient records (EPR) are a form of eHealth technology. An EPR is a computer-based medical record where nurses, doctors and other healthcare providers record and store notes about the clinical care of their patients. Epilepsy centres across Ireland are using an EPR to manage services for people with epilepsy. More than 7000 individuals have a record in the national epilepsy EPR. When they attend the epilepsy centre or contact the epilepsy telephone advice line, their EPR record will be reviewed and updated. Compared to a traditional paper-based medical record, the EPR has many patient safety benefits. For example:
a) Approved epilepsy nurses can quickly access important information about anti-epilepsy medications that the patient is taking and how well these medications are working.
b) Doctors at different locations who are involved in an individual patient's care can look at the same medical record. This helps improve co-ordination of patient care.
Genomic Medicine and Epilepsy EPR
Genomic medicine is sometimes called precision medicine because it uses information about an individual's genes to tailor their medical care. Everyone's body is made up of lots of tiny cells that contain thousands of genes. Genes are the parts of our body that control things like eye colour, whether an individual has straight or curly hair or if they are likely to develop a disease. Sometimes a gene can cause a person to have epilepsy. In PISCES work is being carried out to understand more about how genes influence the development or treatment of epilepsy. PISCES will recruit 100 individuals with epilepsy (50 adults and 50 children) together with their parents to have genetic sequencing. To date 41 patients and their parents have enrolled.
Analysing genetic test information requires input from scientists and neurologists. The epilepsy EPR has been enhanced with new genomic medicine features to support this team-work.
Patient Portal and Epilepsy EPR
Offering individuals with epilepsy access to their EPR via a secure internet connection can help improve their care and health outcomes. For example, it can improve compliance with anti-epilepsy medications and patient's healthcare goal setting. Patients and families who have enrolled in PISCES are working with the project team and software engineers to design, develop and implement a portal to the epilepsy EPR. The epilepsy patient portal can be accessed via a desktop computer, smartphone or tablet and provides authorized and approved users with a view of the patient summary epilepsy record. It also provides tools for patients to report outcomes from their day-to-day life about their seizure severity and quality of life as well as prompts for preparing for clinical appointments with their doctor or nurse. The portal technology meets highest data security standards. Its usefulness is currently being evaluated by participating PISCES families.
Data Analytics and Epilepsy EPR
EPRs allow large sets of patient data to be easily examined to discover patterns and other information about who is at risk of developing a disease, what action can be taken to prevent illness, what is the best medical treatment plan for an individual patient. This is known as 'data analytics'. PISCES is developing data analytics visualisation features to allow for safe interrogation of data contained within the EPR.
Award Winning Project
PISCES is a pioneering project that is using the national epilepsy EPR to bring the growing fields of genomic medicine, patient portals and data analytics into the clinical care pathway for people with epilepsy in Ireland. The project recently won the Public Sector IT Project of the Year at the 2017 Tech Excellence Awards.
Acknowledgements
Partners in the PISCES project include eHealth Ireland, HSE National Clinical Care Programme for Epilepsy, RCSI, Beaumont Hospital and Industry partner ERGO.
For further information about PISCES email kevinpower@rcsi.ie or telephone 01 4025019.