Clare Harney, Managing Director of HD Health, gave a lightning presentation on managing data for patient registries at the 2023 IPPOSI Conference on Building a Data Sharing Health Sector in Ireland.

1. Soteria Clinical
Clinical Workflow for Capture
of Patient Registry Data

2. Contents
● About Patient Registries
● Current Process & Challenges
● Soteria Clinical
● Proposed Process
● Q&A

3. About Patient
Registries
A patient registry is a secure, centralised database, containing
health data on people with a specific diagnosis or condition.
CFRI’s aims are to:
● provide information to the public on the number of people
with CF in Ireland and their health status
● collect and analyse health information to help assess and
plan health services for people with CF
● monitor the safety and effectiveness of CF treatments
● compare the health of people with CF in Ireland to the health
of those in other countries
● produce publicly available reports each year that summarise
registry information on the health status of people with CF in
Ireland
● provide a CF information service to governmental agencies,
health boards, hospitals, health care professionals, approved
researchers and patient advocacy organisations
● contribute to CF research at home and abroad

4. Current Process & Challenges
Episode of care
captured on paper
at point of care
Registry data
collectors manually
enter c.500 data
points from notes
Challenges
• Data collection delayed
• Data often incomplete
• Double entry of data risk of error
• Time and cost inefficient method of data capture leading to
challenging validation of data

5. ©Soteria Clinical
Data can be entered electronically
using a variety of mechanisms.
These include (but are not limited
to) free-text, selecting findings,
adding attachments, and drawings.
Data elements required for
research, registry, data completion
or other reasons can be highlighted
within the clinical note.
Data entry of these elements can
be made as user friendly as
possible for users to alleviate
barriers to collection of essential
data elements.

6. ©Soteria Clinical- Proposed Process

7. Soteria Clinical
Thank you!
clare.harney@infocarehealth.com | T +353 (0) 86 385 6343