In a UK first, NHS Wales and Welsh Government have partnered with Janssen UK, a pharmaceutical company of Johnson & Johnson, to pilot a new healthcare database for people with myeloma – an incurable blood cancer.

In this personalised database, a much wider set of data will be collected from myeloma patients and prescribers, which will build on existing clinical data with real world evidence that measures the effectiveness of current treatment pathways.

According to Lee-Ann Farrell, Janssen’s Government Affairs Manager for Wales and Northern Ireland, “this important initiative will ensure that key information from registered myeloma patients can be collected at every step of a patient’s journey – from diagnosis, to treatment response and overall survival.”

“There has been rapid therapeutic advancement in the treatment of myeloma in recent years.”

“Crucially, it will seek rich qualitative data from patients to better understand what they actually want from their treatment in terms of clinical outcomes and life-quality. By collaborating with NHS Wales and Welsh overnment, we hope to build an infrastructure that supports more informed treatment decisions; helping to ensure patients receive the right treatment, at the right time, in the right way – and for the right reasons,” she says.


The system will first focus on blood cancer


Myeloma was chosen as the first blood cancer of focus for the new data collection system due to the prevalence of the condition in the UK and the new treatment advances seen in this area.

Historically, data capture for cancer patients in Wales has been through the Cancer Network Information System Cymru (CaNISC), however this was designed for solid tumours, and is therefore ill-equipped to capture the nuances of haematological cancers. CaNISC also struggles to capture quality-of-life data or treatment response – a scrutiny gap that leads to wasted resource and ineffective treatment for some patients.

Dr Ceri Bygrave, Consultant Haematologist, Cardiff & Vale Health Board, NHS Wales, said: “We know that there has been rapid therapeutic advancement in the treatment of myeloma in recent years, however there is more still to be done. Through this partnership we hope to develop an advanced database which will measure the impact of treatment, ultimately benefiting outcomes for patients in Wales.”


Data collection will start imminently


The first data collection is expected to start before the end of the year, and the hope is that data collections for other haematolgocial malignancies will follow. For the Welsh Government, which has a significant resource investment in this project, the opportunity is exciting.

Ms Farrell says: “This is an opportunity for the NHS in Wales to ensure that funding for myeloma is appropriately allocated for the processes and treatments that are effective and, that patients want and need as early as possible.”

Partnerships following this innovative model can provide major benefits to patients, the NHS, government and pharmaceutical companies alike. All parties are looking forward to seeing the benefits in the months and years to come.


Date of preparation: May 2018 PHGB/HEM/0518/0014