Launching our findings on Patient Need
On Tuesday evening, we invited 100 stakeholders from across the blood cancer arena to hear what patients have told us about their needs, and to begin the discussion about how the blood cancer sector responds to them.
The event, held at the Royal Society of Medicine, follows on from our extensive patient need research undertaken over the last two years. Though focus groups, interviews and surveys, 2,000 patients have told us what they need throughout the treatment, from initial awareness and diagnosis through to treatment and care. Much of what we learnt surprised us.
Our research has identified 24 areas of patient need across the whole patient journey. Responding to all these can’t be done by any single organisation, so yesterday was a fantastic opportunity to share what we’ve learnt with other charities, the NHS, industry, researchers and of course, patients.
Of these 24 areas, we’ve identified six that we think need attention now – the diseases which are the biggest killers, pre-malignant conditions, early deaths, lack of awareness around blood cancers, patients feeling blood cancer is different to other cancers, and a perceived lack of provision of information and support. These are covered in a report put together for Tuesday’s event, which can be read in full here.
The report marks the end of the first phase of our patient need research, but only the start of what we hope will be a long term collaborative response by every organisation dedicated to beating blood cancer. We’re already in discussion with many charities, companies, researchers, health professionals and NHS decision makers about how we can all respond to these six areas. In addition, our next phase of research will look in more detail at other areas of patient need identified in this report.
You can read more about our patient need work here. We would love to hear from any individuals or organisations who would like to know more about our work in this area – please get in touch with our Patient Need research team on 020 7504 2264 or PNstudy@beatingbloodcancers.org.uk.