How we produce our health information

On this page, we outline how our health information is created, including the robust processes we adhere to as a PIF TICK-accredited charity.  

About our information  

Sarcoma is rare, so high-quality and up-to-date information is vital for people affected by sarcoma. 

We are proud to be members of the Patient Information Forum and to have been awarded the PIF TICK. 

The Patient Information Forum (PIF) award the PIF TICK to organisations that have passed a robust annual assessment. It shows that our health and patient information has met a number of different criteria and that it: 

• is evidence-based and up-to-date 
• involves users 
• is easy to use. 

What we produce  

We produce health information in the following formats:  

• webpages  
• booklets  
• leaflets  
• translated materials
• videos.  

Language we use  

When writing information, we adhere to the following guidelines:  

• Aim for a reading age of between 9 and 11.  
• Use plain language.   
• Avoid jargon and colloquialisms.    
• Use the active voice instead of passive.  
• Avoid technical terms.  
• Keep sentences short.    
• Include visual aids like infographics to explain complex topics.  

We also adhere to digital literacy guidelines. We address digital literacy needs by following WCAG guidelines across our website. This includes, but is not limited to:   

• writing descriptive alt text   
• removing distracting content   
• ensuring on-page actions are clear   
• ensuring colour contrasts are accessible.   

Accessibility  

We will ensure that our health information is accessible to all members of our target audience, including those with disabilities or other accessibility needs.   

• We ensure that our website is designed with accessibility in mind, including the ability to enlarge fonts, provide alternative text for images and graphics and ensure compliance with screen readers.   
• We include subtitles or closed captions on our videos to make them accessible to those who need them.   
• We use plain language and avoid jargon or technical terms to ensure that our information is easily understandable for those with cognitive or learning disabilities.   
• We consider the language needs of our target audience and monitor any translation requests that come in to consider translating some of our materials into other languages as needed.   

Ensuring medical accuracy  

Clinical reviews 

We source at least 1 clinical reviewer, but the ideal is to have 2 reviewers.  

We clearly state our expectations of the clinical reviewer when asking them to review our information. They should:   

• highlight any clinical inaccuracies   
• add any information that is missing  
• tell us about any new treatments coming   
• answer any clinical questions we may have.   

Referencing 

We can search for academic literature using search engines like Google Scholar and PubMed.   

We trust the following sources for citing information about sarcoma:   

• The NHS   
• NICE Guidelines   
• NICE Quality Standards   
• British Sarcoma Group guidelines   
• Scottish Sarcoma Network   
• ESMO Clinical Practice Guidelines   
• NHS England Sarcoma Service Specification   
• Sarcoma UK surveys   
• National Cancer Registration   
• Public Health England   
• NCRAS  
• Registered UK charities   

Involving users  

We may involve users in scoping content in the following ways:   

• Hold a 1:1 interview with a patient, carer, or healthcare professional.  
• Host a focus group with a range of people affected by sarcoma, including patients, family, carers, and healthcare professionals.   
• Publishing surveys through social media, the website or email.  

We recruit and manage a panel of lay reviewers called the Information Reviewers Panel.  This group regularly review our content as part of our review process. They should provide feedback on the following:   

• If anything is inaccurate, wrong, or doesn’t make sense.   
• If the content reflects your lived experience.   
• If there’s anything missing in the content that could be useful to add.   
• If it answers questions you had or have had.   

If you’d like to join the Information Reviewers Panel, please email kellie.roberts@sarcoma.org.uk  

AI in health information  

We do not use AI to generate our content. This is because it can be unreliable and may alter the meaning of information, or lead to misunderstandings.  

However, we can utilise AI to proofread content, for example, by using on-page tools like Grammarly to check for spelling, grammar, and sentence restructures.  

When we use AI to proofread, we read it and only take what is necessary from it. For example, we may like a sentence restructure, and if it still makes sense, we use it. We never lose the human element of creating information, and a human always generates our content and signs it off.