Case Study: Research Database for St Mark’s Centre for Familial Intestinal Cancer
Background
The St Mark’s Centre for Familial Intestinal Cancer (SMCFIC) (incorporating the Polyposis Registry and Family Cancer Clinic) is run by a team of specialists consisting of Colorectal Surgeons, Gastroenterologists, Nurse Practitioners, Nurse Specialists and Administrators. The team works together to ensure prompt diagnosis and surveillance of patients with a genetic condition associated with bowel cancer or from a family at high risk of bowel and other cancers.
The Challenge
SMCFIC look after individuals and their families throughout their healthcare journey. They also provide education for healthcare professionals and the public and actively carry out research.
SMCFIC originally maintained databases of patients and families affected by familial intestinal cancers and conducts on-going research in genetics conditions such as Familial Adenomatous Polyposis (FAP) and Lynch Syndrome as separately data silos. Originally these databases were built when genetic diagnosis was in its infancy, but over the last 10 years has seen a massive rise the sophistication and level of precision which is available in genetic testing.
SMCFIC approached DataTherapy to consolidate and refactor their databases into a single consolidated system which would make both their patient follow-up and research more streamlined and efficient.
The DataTherapy Solution
DataTherapy upgraded and merge the two existing separate databases into a single consolidated system Claris FileMaker which allowed for data clean-up, deduplication and easier cross referencing for patients with complex conditions and multi disease factors. In parallel, the interface was revamped to make better use of existing screen real estate and other technical enhancements were added to improve usability and data quality.
Key Features include:
• Flexible gene data management system so that new markers/variants of interest can be added as new assays become available.
• Enhanced audit logging.
• Dashboards for prioritising based on patient need.
• New tasking system for quickly marking patients and family members follow-ups to the correct specialist staff for follow-up.
Results & Benefits
• More accurate and timely reporting to support new research initiatives and inform best practices.
• Detailed audit logs available for quality assurance and staff training.
• Reduced manual paperwork - single click reports to quickly generate priority patients lists for surgery and follow-up.
"We were struggling with the use of two separate databases to manage the clinical care of our patients. We also needed to carry out much needed data clean up and generally streamline the system we were using to enable us to work more efficiently and safely. DataTherapy immediately understood the issues and made an initially very daunting project manageable. I am absolutely delighted with our integrated system. It has made our work so much easier and clinically safer and I continue to work with DataTherapy to ensure the system is maintained and upgraded as needed. "
Victoria Cuthill, Nurse Consultant and Manager
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