The production and dissemination of information is central to Pain Concern’s mission to help, support and inform those who live with pain and healthcare professionals. By producing good quality information we believe we can make a real difference to the lives of people with pain.
All of the information in our radio programmes, displayed on our website, in our magazine and information leaflets is designed to be accessible, helpful and reliable for people living with pain and healthcare professionals.
Pain Concern is certified by the Information Standard, a quality mark scheme approved by the UK Department of Health. Pain Concern is committed to adhere to procedures of evidencing and expert peer review for all information falling under the terms of the Standard.
Pain Concern produces factual information on health care in the form of leaflets and information sheets and webpages. These fall within the scope of the Information Standard. These publications are normally written by expert authors or created from interviews with experts in the field. We ensure that the evidence for the information contained in these publications is obtained using a prescribed list of sources, verified through peer review and validated by our medical advisors, according to a specified process and procedure.
Pain Concern also produces radio programmes, also available as podcasts, verbatim transcripts of these recordings, a magazine and webpages which contain news, comment and opinion. These fall outside the scope of the Standard because they are unscripted and/or may contain opinion and/or fall under the category of Third Party Information.
Much of our material is provided by experts in the field of pain. Opinion from third parties will be clearly indicated as such, but where information from third parties is considered as falling within the scope of the Information Standard it will be verified with reference to sources of evidence and peer reviewed in the same way as materials produced by Pain Concern.
The production and dissemination of information is central to Pain Concern’s mission to help, support and inform those who live with pain and healthcare professionals. By producing good quality information we can make a real difference to the lives of people with pain.
- Helping people to understand more about pain may help them to feel less concerned or anxious, more confident about discussing their condition with healthcare professionals and better able to explain their condition to family, friends and colleagues.
- Informing people about pain management (self-management techniques, pharmacological or other treatments) can reduce anxiety, help them to manage their symptoms and build confidence.
- Personal stories of people who have found ways to lead a full life despite chronic pain provide encouragement and a sense of not being alone.
- Informing people about developments in healthcare policy and medical research may empower them to advocate for better pain services or may help them to better understand their condition.
- Informing and educating healthcare professionals and the public will lead to greater understanding and improved treatment of chronic pain conditions.
When producing, editing or sub-editing any Pain Concern information product we are always mindful of our audience and aim to make the material and its presentation as informative, supportive and empowering as possible for them. We aim to be responsive to our readers and listeners; answering questions that frequently arise and covering the topics that they have brought to our attention.
- All information must be factually correct and based on up-to-date evidence or be attributed.
- Nothing should be offensive, overly critical, defamatory, libellous or otherwise inappropriate.
- Pain Concern does not recommend or advise against treatments but
- presents evidence and
- allows respected experts to give their opinion.
- Giving patients a voice is an important area of our publications, but it is important to distinguish between the personal views of contributors and the views of Pain Concern.
- Executive Committee members should give a clear statement when writing for Pain Concern whether they are acting in a personal capacity or writing on behalf of Pain Concern.
- As a charity Pain Concern cannot become involved in political campaigns or take a political view on any issue. However, we can and do advocate for benefits for patients in pain.
- Criticism of pain services, professions, health services, etc., should be specific and factual rather than general and emotive.
2. Guidelines on good practice
- Content offering information, general advice or guidance should clearly communicate its aims and purpose.
- Content should be presented in a form which is accessible to its audience, including those with poor vision, and avoiding jargon or unnecessary specialist language where appropriate.
- Layout and language used should be consistent throughout a product.
- Where relevant/appropriate, alternative treatment/care options are clearly stated.
- Our publications will follow the ABPI code on description of medicines and in particular we use generic rather than proprietary names for medicines unless clearly inappropriate to do so.
- Any advertising should be clearly identified.
- Sponsorship is to be acknowledged in accordance with the specifics of any agreement reached with sponsors.
- Any conflict of interest should be disclosed.
- Content commissioned by Pain Concern should reflect the organisation’s views and policies.
- The Executive Committee will appoint an editor to oversee this policy for each Pain Concern publication or on-line content.
- The Listeners and Readers Panel review the content where appropriate.
- In cases of doubt the editor will consult medical advisors before publication.
4. Information Standard (IS) products
- The primary purpose of IS products is the dissemination of factual information based on peer-reviewed evidence as well as clinical experience.
- Material which is based on opinion only or on third party information which has not been verified falls outside the scope of the Information Standard.
- All the above principles and procedures will apply, but additionally see Information Product Flow Chart, and note the following:
- Sources of supporting evidence are to be indicated in endnotes in the internal copy of the product (please see appendix 1).
- The ‘Information Production Checklist’ form is to be attached to the internal copy of the document and filled in for new products, or updated for products under revision.
- The date of issue is clearly indicated on the product along with the planned review date (e.g. ‘February 2013. To be reviewed February 2016.’).
- Products are subject to review before the planned date as consistency with new evidence/guidelines requires. A review may also be initiated in response to expert advice or user comments.
- The magazine’s primary purpose is the dissemination of factual information
- There may be a forum for readers’ letters or opportunities for people in pain and healthcare professionals to submit extended pieces expressing personal views that differ from those of Pain Concern. Provided that this is clearly stated this does not represent a breach of this policy provided that principles 2, 5, 6 and 7 above are followed.
- Each magazine includes an approved disclaimer
6. Social media
- Flickr, YouTube, Facebook, Twitter etc are primarily used for mass communications.
- Such media are public and they generate discussion. It is accepted that opinions will be expressed that differ from those of Pain Concern. This does not represent a breach of this policy provided that principles 2, 5, 6 and 7 above are followed.
- The website’s primary purpose is the dissemination of factual information
- There is a forum for registered users to discuss topics of interest hosted at healthunlocked.com and it is accepted that this will publish opinions that differ from those of Pain Concern. This does not represent a breach of this policy provided that principles 2, 5, 6 and 7 above are followed.
- Any blogs on the website should belong to Pain Concern. They should therefore come under editorial review. Blogs that are of a personal nature can be linked to the website but should remain separate from it.
- The website includes an approved disclaimer.
8. Online broadcasting
- Programmes are for the dissemination of factual information and the professional opinions of established experts.
- Content is controlled by the Producer and is reviewed by the Assistant Producer for compliance with the ABPI code and any defamatory, libellous or other inappropriate content.
- In cases of doubt relating to medical issues the Assistant Producer will consult the medical director.
- In case of the absence of the appropriate Assistant Producer the committee will appoint an alternative.
- In addition the Listeners’ and Readers’ Panel reviews the content for ease of listening.
- The advisory board oversees the scope of the programmes.
- Each programme includes an approved disclaimer.
9. Other written and verbal communication
- All other communication must be of the highest professional standard and must comply with this policy where appropriate.
Appendix 1: How to use evidence
When writing or editing information products falling within the scope of the Information Standard (IS) it is important to check that the information is supported by evidence or based on clinical experience. However, it is also important to bear in mind the needs of the target audience when selecting what information to include or exclude.
- Studies or surveys conducted in the UK generally carry more weight than those conducted overseas.
- Evidence which is used to support standard medical practice (e.g. Clinical Knowledge Summaries or NICE Guidelines) will often be more relevant to our readers than that exclusively published in specialist scientific journals.
- Use sensible judgement when describing possible side effects. Aim to provide reliable and well-researched information whilst avoiding causing alarm or reluctance to engage in treatment which may be more damaging than any potential adverse reaction.
- Don’t overwhelm the reader with facts or statistics. Stick to what is relevant to the pain management issue discussed by the publication and focus on supporting the information rather than a detailed analysis of all the research and statistics available. E.g. an article on chronic pain (CP) after surgery might give a statistic (supported with evidence in a footnote!) for the percentage of patients estimated to develop chronic pelvic pain after hip-replacement surgery as an example of a common post-surgical CP condition, but probably doesn’t need to give a table of percentages for all other post-surgical CP conditions with a detailed analysis.