Ceri Bygrave (CAVUHB) and Nathan Hill (MedInfomatics LTD)
Cardiff and Vale University Health Board and MedInfomatics LTD
This Bevan Exemplar project developed an electronic form to capture data on myeloma patients in Wales, to develop an electronic health record for cancer patient
Background
Modern data systems available outside of health care can support non- manual data entry through the use of voice recognition software and digital linguistics. The iNOTZ product is designed for the Apple iPad tablet and stores thousands of data points based on a sophisticated menu-based structure for questioning. These data are captured in real time via a touch screen menu or using Dragon Medical Dictation software and instantly generates electronic clinical notes. This can be performed by any healthcare professional, patients and carers and can all contribute to a fully electronic health record for patients with cancer.
The HaemBase Cymru project is a Joint Working Agreement between Janssen Pharmaceuticals, Welsh Government, Wales Cancer Network and Cardiff and Vale Health Board.
We have developed an e-form (Outpatient Continuation Sheet OCS Myeloma) to be used via the Welsh Clinical Portal (WCP) to capture real time data on all myeloma patients in Wales. It can capture clinical data, MDT decisions treatment, response and quality of life data. This facilitates robust analysis of the landscape of the disease, the impact of treatment and overall patient benefit through comprehensive capture of real world population data. This supports prudent use of resources including high costs anti-cancer drugs.
Aim
The aim of this exemplar was to
- Design and test the Myeloma version for iNOTZ
- Integrate this package with the HaemBase Cymru project via early adoption in CAV Healthboard.
Outcome
The design of the Myeloma version of the iNOTZ product used an iterative process to review the existing versions of the iNOTZ product that are currently used widely in North America by physicians working in solid cancer and radiation oncology
Next, we mapped out the requirements of a myeloma patient journey and digitalised the process of medical history taking with a series of bespoke menus designed for myeloma specific symptoms such as bone pain, recurrent infections and weight loss. The history then instantly generates a clinical note in the patient’s record which can be distributed to other individuals and healthcare providers. There are also options to capture all of the data required for patients taking part in clinical trials to the highest possible standard.
Challenges
This project did not succeed in its wider goal of merging the cutting-edge technology of iNOTZ with the established framework of the WCP although there have been significant learnings from this partnership which have informed the HaemBase Cymru project and non-manual data entry continues to be an unmet need of the system.
Next steps
The opening of the HaemBase Cymru OCS Myeloma in the Myeloma Clinic in CAV Health board in December 2019 is a very significant step towards improving electronic data capture for patients with haematological cancers in Wales. It is the trailblazer for the wider Cancer Informatics Solution. This will facilitate more prudent use of healthcare resources through more accurate record keeping and reduced requirements for paper
Patients need an accurate, reliable, instant digital record of their care and this will release time back to doctors to focus on improving patient outcomes.
