Health Information Policy
Consultants, contractors, and volunteers (including trustees) of the charity will be required to comply with the content of this policy.
Action Kidney Cancer is committed to providing the highest standards in the provision of kidney cancer health information for patients and their families and carers, both on our website and in hard copy. We are committed to providing objective and trustworthy information and advice on all aspects of kidney cancer.
Our website is maintained by a qualified member of our team. The health information is written by a member of our team with extensive experience and training in medical writing for patients and their families and carers. All health information is reviewed by healthcare professionals and patients for accuracy and readability.
This policy covers all content on our website, including all written content, downloadable materials, and news posts, as well as printed materials, such as booklets and fact sheets.
We strive to ensure that the information we provide is accurate, clearly presented and evidence based. We try to meet the health literacy requirements of kidney cancer patients and their families and carers. All the information we present is based on current peer reviewed scientific knowledge and research.
All kidney cancer health information on our website is checked and approved by a professionally qualified medical oncologist or urologist specialising in kidney cancer or a clinical nurse specialist for accuracy and completeness.
The following sections set out our editorial guidelines, standards, and processes.
Purpose of the policy
Health literacy is the ability of an individual to obtain, understand and translate knowledge and information to maintain and improve their health in a way that is appropriate for the individual and the healthcare system.
This policy aims to ensure that all Action Kidney Cancer consultants, contractors, volunteers, and trustees are aware of their individual responsibilities in relation to the production of health information that is appropriate for kidney cancer patients and their families and carers.
The guidelines within this policy cover all types of health information produced by Action Kidney Cancer. This includes but is not limited to health information:
- On the Action Kidney Cancer website
- On the Action Kidney cancer clinical trials database
- In printed materials, such as leaflets and booklets.
Failure to follow this policy could result in contractual action.
This policy will establish a consistent approach by which we address all aspects of the management of health information, including creation, accuracy, review, and accessibility.
This policy applies to all consultants, contractors and volunteers working with Action Kidney Cancer, including trustees.
It is the policy of Action Kidney Cancer to ensure that:
- Content on the Action Kidney Cancer website and in Action Kidney Cancer printed materials will be accurate, balanced, and transparent. Health information will be based on the best available scientific evidence and data sources.
- The health information produced by Action Kidney Cancer will be impartial and objective.
- The health information produced by Action Kidney cancer will be accountable to the users. Feedback from users is welcomed and any mistakes admitted and rectified.
- Action Kidney Cancer is a charity founded by patients, for patients. We will always put the users of our health information first and foremost when developing new materials and website content. Patients, families, carers, and healthcare professionals are consulted to ensure we meet user’s needs.
- All health information produced by Action Kidney Cancer will be suitable for a general audience.
- All consultants, contractors, volunteers, and trustees working with Action Kidney Cancer are to be made aware of this Health Information Policy.
Roles and responsibilities
The founder or CEO of Action Kidney Cancer will have ultimate responsibility for the development and production of health information for the Action Kidney Cancer website.
The founder or CEO of Action Kidney Cancer will appoint a dedicated consultant medical writer with appropriate qualifications, training, and experience to have responsibility to produce health information within Action Kidney Cancer. This person will be responsible for ensuring consultants, contractors and volunteers working for Action Kidney Cancer comply with the requirements of this Health Information Policy.
The medical writer will work with an external design consultancy and/or website design consultancy to format the health information for presentation on the Action Kidney Cancer website, and for the design and production of leaflets and booklets.
All health information produced by Action Kidney Cancer will be reviewed by an expert clinician, specialising in the care and treatment of kidney cancer patients and an expert kidney cancer patient with lived experience. All Action Kidney Cancer health information is produced in collaboration with patients, family members and/or carers.
Creating health information
Action Kidney Cancer will follow best practice for creating high quality health information by following these guidelines:
- A clear process for creating health information, referenced with evidence where possible. This includes a process for checking content and getting clinical and patient approval, a planned review cycle and transparency about sponsorship.
- The use of relevant, up to date and recognised clinical evidence. Health information will be created using high quality clinical evidence and will be reviewed by kidney cancer clinical experts. Evidence will be checked and updated as necessary at each review.
- Complying with relevant laws on copyright and licensing. See the Action Kidney Cancer Information Policy for data protection.
- Action Kidney Cancer health information will be developed in response to the needs of the patients, families, and carers we support.
- Action Kidney Cancer health information will be easy to use. Content and design will be clear. Patient-friendly language will be used so that it is easy to understand.
- Action Kidney Cancer health information is inclusive and easy to access for everyone who needs it.
Process for creating health information
Action Kidney Cancer will follow these steps for creating health information for use on the website or as hard copy leaflets or booklets.
- The topics for our health information will be agreed with the Action Kidney Cancer management team, Medical Affairs and Patient Support, and the Action Kidney Cancer Trustees and/or Medical Advisory Board.Our health information is developed to meet the needs of the patients, families, and carers we support.
- The format (website, leaflet, booklet etc.) will be decided within the Action Kidney Cancer management team to meet the needs of patients, families, and carers. The format will be chosen to be inclusive and allow easy access for everyone who needs it.
- A consultant medical writer will be selected to draft the health information using relevant and up to date, evidence-based information. The medical writer will have the necessary qualifications, experience, and training to write health information for patients, their families, and carers.
- The draft health information will be reviewed for accuracy, clarity of language, relevance of clinical evidence, and patient friendly format and language. The health information will be reviewed by at least one clinical expert from our Medical Advisory Board or Board of Trustees, a member of the Action Kidney Cancer Patient Support team, and at least one expert patient or carer. The clinical expert will check that the health information is accurate, clinically safe and has been developed using relevant evidence-based information.
- Following the review, the health information will be finalised and posted on the Action Kidney Cancer website. If sponsorship has been used to fund the production of the health information, this will be clearly acknowledged with the names and logos of the sponsors either on the website page, leaflet or booklet.
Process of writing health information for patients
The medical writer will ensure that the health information is up-to-date, accurate, clear, and concise:
- Content is checked by qualified clinicians for accuracy, clinical safety, and evidence.
- A short list of the sources of information and/or articles for further reading is displayed at the end of our health information, as required.
- Content is factual, neutral, and unambiguous. We do not use medical jargon or metaphors. We define medical terminology either in the text or by using an interactive glossary on our website. We describe the medical terminology using plain English first, followed by the medical term, e.g., kidney cancer (renal cell carcinoma).
- We avoid being subjective, for example using words like ‘good’, ‘bad’ or ‘easy’, e.g., by using phrases such as ‘a good chance of recovery’.
- However, ‘good’ and ‘bad’ can be used to describe symptoms, e.g., ‘bad pain’ or ‘lack of sleep is bad for your health’ etc.
- We use language that is easy to understand for patients, family members and carers. We use plain English that is checked for understanding by the patients themselves.
- We aim for a reading age of around 12 years and occasionally check understanding with children aged 11-14 years.
- We keep our health information concise and to the point. Where possible we will use short words, short sentences (about 20 words maximum) and short paragraphs.
- We use subheadings and bullet points where possible, to help the reader navigate the health information.
- We use the active voice e.g., ‘report your side effects to your GP’ rather than ‘your GP should be made aware of your side effects’.
Qualifications, experience, and training of the medical writer
The medical writer responsible for the production of Action Kidney Cancer health information should be qualified to degree level or higher, with a degree in a scientific, biologic or medical discipline. They should also have experience of writing patient information materials in another role, such as the pharmaceutical industry, the NHS, or another health charity.
The medical writer will receive training in the form of attendance at conferences, webinars, and online training courses on the production of patient-friendly health information materials. The medical writer will be responsible for reading guidelines on the production of health information for patients.
The medical writer will also be responsible for liaising directly with the charity founder or CEO as required and keeping them up to date with kidney cancer health information and research through attendance at kidney cancer conferences, searching and reviewing kidney cancer news items, reading published kidney cancer research papers, watching webinars, and listening to podcasts with expert kidney cancer clinicians.
Review of health information
All written Action Kidney Cancer health information is reviewed for accuracy and completeness by the medical writer, a clinical expert from our Medical Advisory Board or Board of Trustees, and an expert patient member of the Action Kidney Cancer Patient Support team every 2 years. The date the content was checked, and the date of the next review will be displayed at the end of the written document.
This cycle of review of our health information content will ensure the information is kept up to date and clinically accurate.
Feedback is invited from patients, family members and carers so that the health information can be reviewed and improved. Feedback from end users is actively managed and responded to.
Monitoring and review
This policy will be monitored by the Action Kidney Cancer management team biennially to judge its effectiveness and will be updated in accordance with changes in the law as appropriate. We will report to the Board of Trustees on any actions or activities undertaken that are covered by this policy. Any information provided by consultants, contractors, volunteers, trustees, or members of the Action Kidney Cancer community for monitoring purposes will be used only for these purposes, and will be dealt with in accordance with the Data Protection Act 2018.
Policy Written: November 2023
Next Review: November 2025