This is the editorial policy for producing and reviewing health and patient information for Cancer Research UK About Cancer web pages.
This policy aims to ensure that information is produced to a high standard, is accurate, current, and accessible.
This policy covers information produced for Cancer Research UK's patient information and health information pages in the section called ‘About cancer’. It includes sections on
- causes of cancer
- cancers in general
- cancer types
- coping with cancer
The Health Information Team and the Patient Information Web Team produce the 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, colour, and 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.
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 consult external experts about our content.
We aim to 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.
Cancer Research UK is also a certified member of the Information Standard. This scheme aims to improve the quality of health and social care information in the UK.
The Information Standard makes sure that the cancer information we produce is:
- supported by the best evidence available
- reviewed regularly
- produced according to quality guidelines
It also means that we involve people affected by cancer and the public in our information production. All Cancer Research UK content that is Information Standard approved is marked with the Information Standard logo.
Cancer Research UK is responsible for the accuracy of the information we publish and neither the Information Standard scheme operator not the scheme owner shall have any responsibility whatsoever for costs, losses or direct or indirect damages or costs arising from inaccuracy of information or omissions in information published on the website.
Major new content is planned by the health team and patient information web 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
After identifying needs a case is made for the new content. This is discussed at a team meeting and a plan for the content creation is put in place.
Prioritisation and planning for new content takes place at editing meetings and team meetings. The Senior Patient Information Manager and Patient Information Manager (Clinical Review) are responsible for the writing programme in consultation with the Patient Information Web Team.
Most information is written in-house by members of the health information team or the patient information web team.
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.
The patient information web team originates the 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 to 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 originated in-house 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 (ie the editorial workflow and specialist review process).
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: current published NICE, SMC, SIGN, ESMO guidance
- Medical practice guidelines published by relevant UK medical bodies: eg Royal colleges, British Society of Haematology, Scottish Medicines Compendium, British Association of Surgical Oncology (BASO) etc
- Trusted reports: WHO, World Cancer Research Fund (WCRF) and International Agency for Research on Cancer (IARC)
- Primary, peer reviewed literature: search 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, eg when researching rare cancer types.
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
- short pages where possible
- use of diagrams, illustrations, videos and animations
Writers must adhere to the house style for all site content.
A health 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 cancer information nurses, the cancer statistics team, science communications, or the policy team.
Suitable image(s) are selected either from the Cancer Research UK photo library or sourced externally if necessary
A specialist information writer produces a first draft of new material, ensuring that it is clinically accurate and the information is balanced and reflects UK clinical practice. The draft is then passed on to one of the team managers for editing re plain English, grammar, link consistency and fact checking. Further amendments may be needed after feedback during the editing process.
A manager edits and checks each information draft for
- clinical accuracy
- links throughout each section, to other parts of the site and to other sites
The originator of the information or the manager make any necessary changes identified during the check.
External specialist reviewers are selected by a Patient Information Web Team Manager or a Health Team Manager, in consultation with other clinical editorial team members. Specialist reviewers are asked to declare any possible conflict of interest.
The health team managers ask external specialists to look at pages on a case by case basis.
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 health professionals currently in clinical practice in the UK, such as cancer surgeons, medical oncologists, specialist nurses, oncology pharmacists, dietitians and physiotherapists.
Usually, for a specific cancer, the reviewers include one oncologist and one cancer surgeon. For cancers not normally treated with surgery, such as leukaemia, one oncology haematologist could be 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, the originator of the content incorporates them as appropriate.
The pages of all returned reviews are kept on file in hard copy or as an electronic 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 are noted on the review copy.
The team contact the specialist reviewer about any areas of confusion or inconsistency that cannot be otherwise resolved.
Once all external reviewers' comments have been incorporated, a Patient Information Web Team manager carries out a final review. They ensure that the information is balanced in terms of the evidence and reflects current UK medical practice.
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, such as 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, as 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 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 should be sent to specialists for review before being uploaded onto the site.
We contact one or more lay reviewers to review and provide feedback on each new page, section or leaflet.
We have a panel of lay reviewers. The panel is comprised of people who have had cancer themselves or are relatives of people with cancer. They have varying levels of health literacy.
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 1 lay reviewer to check:
- that the tone and style is friendly and supportive
- the information is understandable
- it is accessible
- it reflects their experience
- whether there is additional helpful information we could add
We aim to recruit 10 members of the general public to comment on draft content. This will happen for site sections or groups of pages together. Recruitment happens through CRUK user testing routes, channels and networks: for example, social media and friends/family of patients in our involvement network. When recruiting we ask that they’ve not had a cancer experience.
We ask reviewers:
- how easy the content is to understand
- whether it is informative and useful
- if they are happy with the tone
- what the main takeaway messages are
A free text comment box will also be included.
Overall we must have feedback from a minimum of 3 people. If this has not been reached via the above, other methods should be explored.
Feedback as a whole will be considered by the writer, alongside the scientific evidence. If significant changes are made, content may be re-checked with lay reviewers.
Following the incorporation of reviewer comments, proofreading of all new content is carried out by the appropriate manager on the final draft. They correct any spelling, typing or grammatical errors.
Content may be mounted on site prior to this final check, but is not made live until after proofing and checking.
Adding content to the site
All content is entered into our online content management system, including illustrations and video. Site content for the health team is mounted by a member of the Digital team. Patient information content is mounted by a member of the patient information web 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 from the health team or patient information team also carries out a final check as soon as possible after the content goes live.
We archive all drafts of new information and reviewer comments electronically or occasionally in hard copy.
Previous versions for both new and updated content are stored in the appropriate web section folder located on the server here:
Prevention content – G:\Health Information Department\Ev + Info\Website\Healthy Living\Site sections
Early diagnosis and screening content – G:\Health Information Department\Ev + Info\Website\Spot Cancer Early
The patient information eRoom holds all drafts of new patient information content produced during development, up to the final copy.
The current Cancer Research UK website content management system automatically creates an archive version of every piece of information (entity).
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 Web 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, eg for 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 eRoom. This material is kept for up to 5 years in line with the requirements of the Information Standard.
All pages have the date of last review (or date it was originally made live in the event of new content). The date is at the bottom of each page. We are working towards adding the date of next review.
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. The members of the team with a clinical background in the Patient Information Web team and the managers in the Health Information team have sufficient expertise and subject knowledge to implement these changes without prior external review.
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.
Content changes are documented in the review database and can be viewed in the content management system.
In addition to this system of maintaining currency, we throughly review existing site sections every 12 to 36 months. Review is carried out internally for health information and alternately externally and internally for patient information.
External review for patient information is 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 web team
- a member of the Cancer Research UK information nurse team
Internal review for health information is carried out by a health information officer. The content is ediited and peer reviewed as described above.
Review preparation consists of a search of sources listed in the researching section above and is carried out according to our in-house review guidelines.
Clinical trials database
The clinical trials database has its own review policy.
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.
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 a page with a link to our website feedback form. Or you can email the patient information web team at email@example.com
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 information nurse team.
We also receive feedback from the permanent 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 unless we 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 responding is appropriate, in which case we will do so.
If an enquiry comes to us that another team within CRUK, or another organisation, is better placed to answer, we forward it to the appropriate department.
We endeavour to reply to patient information enquiries within 3 working days and health information 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.
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.
It is rare for us to receive complaints. They are responded to and sent by the most appropriate member of the Health Information team or the Patient Information Web team. A record of the communication and actions taken is stored in the patient information web team in-box or the health 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 and respond to the complainant to let them know.
While all views are considered, in the case of a difference of opinion, we reserve the right not to continue with lengthy communication, either written or verbal, 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. Sites must provide information that is additional to our own.
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 number featured.
All sites we link to must be reputable and produce reliable, high quality information that is regularly updated. 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 information web or health information team. A Patient Information Web team manager or a Health Information 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 are updated regularly and information may change and differ from when the blog was first viewed by a member of the Patient Information Web or Health Information team. 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. The only blog we link to is the Cancer Research UK science blog.
If we receive a request for a link to an external blog we signpost the individual to Cancer Chat – our on line cancer forum.
Policy review date
This policy will be reviewed in or before August 2018.