Acute leukaemia patients get new online information centre that will help them get the best possible care

https://www.patientpower.eu/acute-lymphoblastic-leukaemia/

UK Version

https://www.patientpower.eu/acute-myeloid-leukaemia/

US Version

A unique collaboration between some of the world's leading leukaemia experts and the patient community in the UK and across Europe has resulted in the development of a one-of-a-kind educational resource centre that provides acute leukaemia patients with the support they need, when they need it most.

It is the first time that such a comprehensive medical information video resource has been gathered together in this format and comes at a time when cancer patients and caregivers are advocating for a bigger say in decisions about their individual treatment regimens.  

Some of the world's leading experts in the treatment of acute lymphoblastic leukaemia (ALL) and acute myeloid leukaemia (AML) have been brought together on a new video-rich website to advise patients on what to expect when diagnosed with acute leukaemia, how to make sure they get the best possible care from their healthcare providers, and how to make the right decisions about treatment. In addition, they provide practical tips on living well with cancer, and coping with life in remission and survivorship - something that the patient community needs in order to feel empowered, so that they can maintain as high a quality of life as possible.

Leukaemia is the 12^th most common cancer in Europe, with 82,000 new cases diagnosed in 2012 (1). While death rates are slowly falling, patients with AML have a 5-year survival rate of 25% (2) and patients with ALL have a 5-year survival rate of 70% (3); access to new treatments and clinical trials often depends on where they live.

Now, the London-based team from a leading cancer patient channel Patient Power has developed a new and independent online video 'hub', where patients can be directed to the support networks of over 100 European acute leukaemia groups and charities, as well as expert advice and the very latest insights into what to expect on their journey with acute leukaemia. Most importantly, the panel of experts from the UK, Italy, France, Spain, Germany, Canada and the US provides insights into how to get the best from a healthcare team, including what questions patients and caregivers should be asking, what they should expect, and the steps they should take to ensure they are receiving the best possible treatment.

The founder of Patient Power, Andrew Schorr, himself a two-time cancer survivor, says that the internet has given patients access to medical information and the ability to research their disease in great detail.

"Patients can be suspicious of educational programmes run by industry and often confused by communication to and from healthcare professionals," he said, "As a result there is an unmet need for patients to find reliable, trustworthy sources of information online. We have given patients a voice to ask questions directly to leading healthcare experts."

Charlie Grieve, Managing Partner of Patient Power Europe, highlights the importance of collaboration among European non-profit partners for the successful delivery of the project.

"Through collaboration between patient groups and leading cancer experts, we have created these engaging new online health centres, rich with information for European and international patients. I know this educational resource can provide patients and caregivers with knowledge, confidence and hope. We're already seeing many thousands of views and seeing a very positive interaction on the website and social channels in multiple languages. The next phase of the project will see increased content publishing, with a wider range of topics covered, and additional languages."

The new initiative has received support from medical professions and charities alike. Professor Alan Burnett, from Cardiff University, who is one of 15 cancer experts that contributed to this new initiative, said, "With all the new things happening in diagnosis, prognostication, trials and the effects of treatment, it is very important that patients can be provided with information about their disease, its effects and what having certain treatments involves. Patients must be given confidence in the pathway ahead."  

1. https://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/leukaemia
2. https://www.healthline.com/health-slideshow/acute-myeloid-leukemia-survival-rates-prognosis#5  
3. https://www.cancerresearchuk.org/about-cancer/type/all/treatment/statistics-and-outlook-for-acute-lymphoblastic-leukaemia

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