We go behind the scenes with Hannah Birkett, our Research and Information Officer.
Why is it so hard to find information about the rarer forms of primary bone cancer?
The forms of primary bone cancer we are producing information on are extremely rare. Some make up less than 1% of all primary bone cancer cases – which is itself a very rare cancer when compared to tumours of the breast or lung for example.
It is hard to find information on these rare cancers as the incidence rate is so low that there is still a lot to learn about their behaviour and the most efficient treatment methods for these tumours. For this reason, there is little-to-no information available aside from scientific reports and case studies, which are not informative or digestible for all readers.
Furthermore, patient information found online may not necessarily be reliable or accurate. The Bone Cancer Research Trust developed this information to ensure that any individual diagnosed with primary bone cancer, no matter the type or rarity, has access to accurate and trustworthy information without feeling overlooked.
How did the Bone Cancer Research Trust find and put together all the information?
Coming from a scientific background enabled me to find and interpret numerous scientific articles and individual patient case reports to locate key, accurate, facts surrounding these rare tumour types. Cross-referencing this information to various other sources enabled me to confirm its accuracy before transforming the information into a non-scientific piece using plain English that is fit for all audiences without the use of medical jargon.
After carrying out some research a few years ago, the Bone Cancer Research Trust discovered from healthcare professionals, patients and the general public that the reading age for health information should be set at around 14 years of age. We therefore aim to write information that is understandable for this age group as a way of confirming it is suitable for a wide range of readers.
What is the Information Standard?
‘The Information Standard’ is a programme supported by NHS England. Any organisation that produces health and care information can apply to join the programme and if the organisation successfully meets the quality criteria of the information standard they become certified. The producers of the information can then mark their materials with the Information Standard logo so readers can be reassured that the information is trustworthy and accurate.
The Bone Cancer Research Trust have held the Information Standard certification since March 2011 and are inspected annually to retain this award.
Which experts did you work with?
In order to maintain our Information Standard certification, the Bone Cancer Research Trust ensures each piece of information that is produced goes through a ‘review panel’ to check the accuracy, quality and presentation of our information is of an excellent standard before it is released to the public via our website or leaflet materials. This review process involves clinicians and scientists working in the field, as well as previous patients to comment on the information from a wide perspective.
This year we were lucky to have a fantastic review panel. Bing Hu, a professor of dental research with a key interest in ameloblastoma (one of the rarer bone tumour types), was a fantastic addition to our panel as there are very few scientists in this field. We also worked heavily with Craig Gerrand, a consultant orthopaedic surgeon in Newcastle, who oversees all of our information before it is released on what is known as our 'Editorial Board' - which is something he has helped us with for a number of years.
What difference will this new information make to patients?
At The Bone Cancer Research Trust we feel it is crucial that every patient has a supportive and informative place to turn to when receiving a diagnosis. In England alone, over 50,000 organisations produce health and social care information, yet very little of these are credited by the ‘Information Standard’.
By providing this information we will give patients, and their family and friends, trustworthy sources of information to prevent the feeling of being overwhelmed and confused about the information available online.
Furthermore, from individually researching each rare tumour type, we are able to detail information on tailored treatments for these tumours. From this we hope to give individual patients a wider understanding of their tumour type, and their options, so they are able to provide their opinion and input into the management of their tumour and their day-to-day lives.