Editorial policy

This policy covers information in the ‘About cancer’ section of the Cancer Research UK website. It includes sections on:

• the causes of cancer
• general information about cancer
• different cancer types and treatments
• coping with cancer

The Health Information team and the Patient Information team produce this information.

This policy does not include information produced for the clinical trials database. 

Ownership and purpose of the site

Our purpose is to provide information about cancer that is freely available to all and written in a way that is accessible to people of all literacy levels. We endeavour to provide information with no bias in regard to:

• gender
• religion
• ethnic origin
• age
• sexual preference
• skin colour
• physical or mental disability

‘About cancer’ is fully owned, funded and managed by Cancer Research UK. You can be confident that the information we provide is produced and brought to you independently of any influence by outside bodies or funding providers.

We are happy to acknowledge donations made to Cancer Research UK dedicated to financing our patient and health information pages. This gives credit to the person or organisation making the donation and is also in a spirit of openness about our sources of funding.

The patient information website of Cancer Research UK was formerly called CancerHelp UK. We stopped using this name in 2014.

Quality assurance

We aim to provide information that is accurate, well supported, of high quality and easy to read. To do this we review the best available evidence. And we consult external experts about our content. 

We acknowledge where issues are controversial and make efforts in good faith to present the differing arguments in a fair and balanced way.

Our site carries the Plain English Campaign Crystal Mark award. We display this mark following assessment and approval by the Plain English Campaign. This takes place each year. 

Our site also displays the Trusted Information Creator Kitemark (TICK). The Patient Information Forum (PIF) award the PIF TICK to organisations who have passed a thorough yearly 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

Commissioning

Most information is written by members of the Health Information team or Patient Information team. 

Health information

An appropriate member of the Health Information team researches the content area and writes and develops a series of drafts. This process includes input from other Cancer Research UK teams where necessary.

Patient information

The Patient Information team create content for the patient information web pages. When a need for new content is identified, it undergoes a prioritisation process.

Content writers meet with a senior member of the team. They discuss the structure, content, illustrations, appropriate external reviewers and deadlines.

A manager in the team oversees the production of information both internally and externally. They are responsible for setting deadlines, commissioning reviewers and coordinating the production process to publication on the website.

Videos, animations and diagrams

Videos, animations and images are either commissioned within the organisation or with an external agency. Scripts and initial drafts are written by relevant members of the Health and Patient Information teams.

Sourcing material externally

Material can be sourced outside Cancer Research UK with the agreement of the Head of Health and Patient Information and other managers in the Health and Patient Information teams.

Material can be commissioned externally if:

• the writing resource is not available within the team
• external sources of relevant expertise are identified

All external writers must comply with our house style and our writer guidelines. Their work is subject to the same procedures as information produced internally. For example, using the same editorial workflow and specialist review process.

Consent

Before filming or photographing anyone we ask them to sign a model release form to gain consent. This form explains how we will use the footage or photograph. We do this when we are doing the filming or photographing and when we have commissioned an agency. We also ask people to sign the form when they supply their own photographs.

The signed consent forms are stored electronically in a secure system with the records for the relevant information. 

Planning

Major new content is planned by the Health Information and Patient Information team according to the site's current content plans. Subjects for new content are selected according to:

• evidence of user need 
• feedback from site users
• feedback from patient advisers and health professionals
• previously identified gaps in site content
• use of digital metrics such as Google analytics to identify the information people are searching for
• current issues and changes in health awareness and oncology/haematology

As part of this planning, we consider the best format for this information. For example, whether it should be written text, a video, or both.

Health information

After identifying needs a case is made for the new content. This is discussed and a plan for the content creation is put in place.

Patient information 

Prioritisation and planning for new content takes place at editing meetings. The Patient Information managers are responsible for the writing programme in consultation with the rest of the team.

Researching information

Before beginning the draft of a new page or section the writer carries out comprehensive background research of the subject. This comprises a thorough literature review and check of other appropriate and relevant sources.

Only current, authoritative, relevant, and trustworthy evidence sources should be used. Evidence is selected according to quality. The final information provided should reflect the balance of available evidence, clearly identifying any uncertainties or unknowns.

Criteria for sources to check:

• UK or European health and cancer guidelines, for example current published NICE, SMC, SIGN, ESMO guidance
• Medical practice guidelines published by relevant UK medical bodies, such as Royal colleges, British Society of Haematology, Scottish Medicines Compendium (SMC), British Association of Surgical Oncology (BASO)
• Trusted reports: World Health Organisation (WHO), World Cancer Research Fund (WCRF) and International Agency for Research on Cancer (IARC)
• Primary, peer reviewed literature: search on PubMed and NICE Evidence

More weight should be given to more recent systematic reviews and meta-analyses. Large, well-designed prospective cohort studies and randomised controlled trials can also be considered.

Other available evidence should be considered only if the above does not provide a sufficient body of evidence. For example when researching rare cancer types. 

Writing

For all materials and drafts the writer must comply with:

• the health and patient information writer guidelines
• the most current style guide
• training and advice on web writing
• the plain English Campaign general guidelines and their guidelines for writing medical information

Our current house style includes:

• use of white space
• use of the second person, rather than third
• use of active voice
• bullets where appropriate
• short sentences
• medical terms secondary to plain English description
• friendly tone
• use of diagrams, illustrations, videos and animations

Writers must adhere to the house style for all site content.

Health information

A Health Information team member is responsible for producing the first draft. The draft then follows a review and editing process carried out by a senior member of the team (at least managerial level).

Further copy review and editing is conducted as appropriate by the Cancer Information Nurses, the Cancer Statistics team, Science Communications, or the Policy team.

Suitable images are selected either from the Cancer Research UK photo library or sourced externally if necessary.

Patient information

A Patient Information Specialist Writer produces a first draft of new material. The draft is then passed on to one of the team managers for editing. Further amendments may be needed after feedback as part of the editing process.

Editing

A manager edits and checks each draft of new information for:

• clinical accuracy
• readability
• grammar
• punctuation
• style
• links throughout each section, to other parts of the website and to other sites
• referencing
• accessibility
• relevance

The writer or manager make any necessary changes identified during the check.

External review

External specialist reviewers are selected by someone in the Patient Information or Health Information team. Specialist reviewers are asked to declare any possible conflict of interest.

Health information

The Health team managers ask external specialists to look at pages on a case by case basis.

Patient information

Reviewers for each section are selected individually from our panel of specialist reviewers, according to the subject of that section. For cancer type sections, reviewers are qualified oncology or haematology professionals or other healthcare professionals currently in clinical practice in the UK. For example, we use cancer surgeons, medical and clinical oncologists, specialist nurses, oncology pharmacists, dietitians and physiotherapists.

The reviewer usually includes one oncologist and one cancer surgeon for sections about a cancer type. For cancers not normally treated with surgery, such as leukaemia, one haematologist reviewer is usually selected. 

We ask the reviewers to comment on:

• the overall tone of the section
• whether the information represents current UK clinical practice
• whether there is an appropriate balance between different treatments
• any additional aspects we should include
• upcoming treatments that we should refer to, including treatments still in trial
• diagrams – checking existing ones and suggesting possible additional ones
• any upcoming UK guidance they are aware of that might affect this information

For Coping with Cancer sections, reviewers might include GPs, community cancer nurses, financial advisors, and other qualified professionals with areas of relevant expertise.

Once comments are received from the external reviewers, we incorporate them as appropriate.

The pages of all returned reviews are kept on file as an electronic copy or hard copy for 5 years. The person implementing the comments makes notes on the documents about whether comments have been incorporated and when. An explanation of why any comments from reviewers are not included is noted on the review copy. The team contact the specialist reviewer about any areas of confusion or inconsistency that cannot be otherwise resolved. 

Reviewer payments

We pay a fee to our professional reviewers for the sections or pages that they review. They also agree to respond promptly to one off queries that may occur during the year. For example, this might be checking a paragraph to be included about a new form of treatment.

Payment is made when the completed review has been returned. We retain the right to withhold payment of the fee if reviews are not carried out to a satisfactory standard. This is determined on an individual basis by the manager responsible for the content. Some reviewers choose to waive the payment. 

Review for video, animations and diagrams

Videos and animations are usually produced with the input of relevant specialists. They are consulted during writing of the script or preparation of the content being produced. For example, the script for 'exercises for breast cancer' was written with the input of specialist physiotherapists.  

Specialist input is recorded as part of the production process. If specialists are not included in production, then the video/animation/diagrams are sent to specialists for review before being uploaded onto the site.

Availability of our information in different languages

Our information is primarily in English. We consider every translation request we receive. But unfortunately, we are do not have the resource to fulfil all of these requests. When developing or reviewing information, we will prioritise the translation of information:

• where there is the greatest need
• and that potentially has the most impact

When it is not possible to provide information in a certain language, we will consider how we can work with other organisations to do this. 

Lay review

We contact one or more lay reviewers to review and provide feedback on each new page, section, video or leaflet.

Patient information

We have a panel of lay reviewers. The panel includes anyone affected by cancer. For example, a person with cancer or a family member, partner, or close friend of someone who has had a cancer diagnosis. 

We recruit lay reviewers through:

• our website
• the Cancer Research UK nurse helpline
• our online forum Cancer Chat
• our Patient Involvement Team

For each new piece of content we ask at least one lay reviewer to check that:

• that the tone and style is friendly and supportive
• the information is understandable
• it is accessible
• it reflects their experience

We also ask if there is any other useful information we could add.

As well as new information, we ask lay reviewers to look at a sample of existing information. This is usually done at the same time as an external review by a specialist.

Health information

We aim to recruit members of the general public to comment on draft content. Recruitment happens through Cancer Research UK user testing routes, channels and networks. For example, social media and our involvement networks.

We ask reviewers:

• how easy the content is to understand
• whether it is informative and useful
• if the tone is appropriate
• what the main takeaway messages are

Responses as rating scales and free text comments are included.

Overall we must have feedback from a minimum of 3 people. If this has not been reached via the above, other methods are explored.

Feedback as a whole is considered by the writer, alongside the scientific evidence. If significant changes are made, content may be re-checked with lay reviewers.

Proofreading

Following the incorporation of reviewer comments, proofreading of all new content is carried out by the appropriate manager on the final draft. The writer or manager correct any spelling, typing or grammatical errors.

Adding content to the site

All content is entered into our online content management system, including illustrations and video. Site content for the Health Information team is mounted by a member of the Digital team. Patient information content is mounted by a member of the Patient Information team or the Digital team.

Whoever mounts the content checks each page on the front end of the site for formatting or link errors. A manager also carries out a final check as soon as possible after the content goes live.

Archiving

We archive all drafts of new information and reviewer comments electronically or occasionally in hard copy.

Health information

Previous versions for both new and updated content are stored in the appropriate web section folder located on the internal server.

Patient information

All drafts of new patient information content produced during development, up to the final copy, are stored in Sharepoint.

The current Cancer Research UK website content management system automatically creates an archive version of every piece of information (entity). 

Expiring information

If material is to be removed permanently from the site, it is unpublished electronically. Expiring content is carried out by a member of the Digital team or a manager in the Health or Patient Information teams. They create redirects for the expired content to direct users to other appropriate content on the site. 

The teams can access expired pages if necessary. For example in the case of a user query.

When content is permanently removed from the site, it remains in the content management system. It might also be archived in the archive folder in Sharepoint. This material is kept for up to 5 years.

Page dating

All pages have the date of last review (or date it was originally made live in the event of new content). Some of our pages also now include a date for next review. These dates are the bottom of each page.

We aim to review all content within 12 to 36 months of the last review date.

Review and updating of existing content

For existing site content, we have a strong commitment to ensuring the currency of information.

We update our website content with all relevant NICE decisions, treatment guidelines, major clinical trial results, and scientific evidence changes as soon as possible after their publication. Members of the team with a clinical background in the Patient Information team and the managers in the Health Information team have sufficient expertise and subject knowledge to implement these changes without prior external review.

Health information

An officer drafts the new content and it is signed off by a manager before being saved on the system and uploaded to the website.

Patient information

Content changes are documented in the review database and can be viewed in the content management system.

Periodic review

In addition to this system of maintaining currency, we thoroughly review existing site sections every 12 to 36 months. Review is carried out internally for health information.  Patient information alternate between an external or internal review for each section.

External review for patient information is usually carried out by up to two specialist reviewers.

Internal review for patient information is carried out by one of the following:

• a clinical member of the Cancer Research UK Patient Information team
• a member of the Cancer Research UK Cancer Information Nurse Team

Internal review for health information is carried out by a health information officer. The content is edited and peer reviewed as described above.

Review preparation consists of a search of sources listed in the researching section above. This is carried out according to our internal review guidelines.

Feedback and user testing

We welcome feedback from our users on the information we provide and on the ease of use and accessibility of our website. We receive thousands of items of feedback each year and most of these are very positive.

We read all feedback and retain it to inform our site development. 

Collecting feedback

There are several ways of providing feedback to us. You can click on the 'Contact Us' link in the footer on any page on this website. The link takes you to a page with a link to our website feedback form. Or you can email the Patient Information team at patientinformation@cancer.org.uk

All comments received by email or on the site feedback form are reviewed by a member of the team. Clinical questions sent to the site are forwarded to the Cancer Research UK Cancer Information Nurse Team.

We also receive feedback from the annual pop-up survey that appears at the bottom of each page. 

Responding to feedback

If a reply is required to a non medical enquiry or complaint, the feedback form is passed to our admin team, who either answer it personally or pass it on to someone else in the team who has experience with the issue raised.

We respond to all genuine questions from members of the public in the UK.

We are not obliged to respond to:

• enquiries from people outside the UK
• enquiries containing abusive language or swearing
• repeated enquiries from the same person on the same point - we send a response to this effect

If the enquiry is from a student asking for help with research, we send a standard response that directs them to our online resources. We may decide, on a case-by-case basis, that a more detailed response is justified.

If the enquiry does not contain a question, and is not a complaint, we will usually not respond. However, there may be times when we respond if it is appropriate to do so.

If an enquiry comes to us that another team within Cancer Research UK is better placed to answer, we forward it to the appropriate department.

We endeavour to reply to enquiries within 7 working days. If this is likely to be longer you will be notified that your message has been received and is being attended to.

We amend site content in response to any feedback if it is considered to be appropriate.

Surveys and usability and readability testing

We periodically carry out usability and readability testing with representatives of the site's main user groups:

• people diagnosed with cancer or having treatment
• cancer survivors
• relatives of people diagnosed with cancer
• health professionals
• people concerned about cancer symptoms
• people interested in health awareness

We carry out periodic surveys of our patient information site users. We also have regular usability testing sessions with the general public and representatives of our main audience groups.

For health information, we hold interviews with our audience groups and the lay public. We also run periodic focus groups to gather feedback on particular aspects of our information.

Questions about cancer

If you have a question about cancer, you can write to our team of cancer information nurses using our Send a Question form. If you are in the UK and you include your email address, they will reply to you personally by email. If you would prefer a reply by post, you can give your full postal address.

Complaints

It is rare for us to receive complaints. The most appropriate member of the Health Information or Patient Information team will reply. A record of the communication and actions taken is stored in the Patient Information team inbox or the Health Information team folders.

If the complaint relates to inaccurate or out of date information on the website we will amend the information as soon as possible. We will reply to the complainant to let them know and thank them.

We consider all viewpoints. In the case of a difference of opinion, we reserve the right not to continue with lengthy communication that we perceive to be of no benefit either to us or to the initiator.

Links to other websites

We provide links to websites that provide information or services that are useful to people affected by cancer. 

We limit lists of links, as we believe that long lists of links are less useful than shorter, more discriminating ones. This can be over-ruled with discretion. We would not wish to exclude a useful link solely on the grounds of numbers featured.

All sites we link to must be reputable and produce reliable, high quality information. We check that the information they provide is:

• evidence based with references available on the website or on request
• regularly updated
• written clearly and easy to understand

The sites should also have information that is additional to our own.

Links must be to organisations providing national services, rather than local, and must be UK based. Unless there is a special consideration (generally that a service is useful to our audience and difficult to find) we do not include links to commercial companies or services.

Links are approved on an individual basis. Link requests are reviewed by a member of the Patient or Health Information teams. A  manager has the final say on the inclusion of individual links.

We reserve the right to refuse to link to any website that we do not consider suitable for inclusion. Due to the many link requests we receive, our policy is to contact only those organisations whose request for a link is successful.

This site can and will link to sites who have a different opinion to our own on any given issue. However, we will not link to sites where the opposing viewpoint is based on poor evidence, rumour, hearsay, or uncorroborated personal opinion. We will not link to sites whose main aim is to sell an uncorroborated service or "treatment" to the public.

Links to blogs

We will not link directly to an external blog. Blogs aren't always updated regularly and the information may change from when the blog was first viewed by a member of the Patient or Health Information teams. We cannot link to information where there is a risk of the information becoming inaccurate or unreliable.

Blogs may also contain personal opinions that conflict with the views and beliefs of Cancer Research UK. 

If we receive a request for a link to an external blog we signpost the individual to Cancer Chat – our online cancer forum.