The Information Standard
Information that is clear, accurate, evidence-based, up-to-date and easy to use allows people, patients and communities to become better informed and more involved in their health and care.
NHS England developed a quality standard to support the production of high quality health information. The Information Standard had 6 principles that organisations had to adhere to in order to be certified. This assessment and certification scheme is now closed, and the certification ended on 31 July 2019.
The six principles are:
- Information Production - you have a defined and documented process for producing high quality information
- Evidence Sources - you only use current, relevant and trustworthy evidence sources
- User understanding and involvement - you understand your users and you user-test your information
- End Product - you confirm that your finished information product has been developed following your process and is of good quality
- Feedback - you manage comments/complaints/incidents appropriately
- Review - you review your products and your process on a planned and regular basis
At the MS Trust, we were proud to be certified by the Information Standard. We feel that these six principles are vitally important, and we will continue to produce our information on this basis.
All our information, whether it sits on the website, is printed or sent out via email, is produced in-house by our team of Information Officers. We do not normally solicit external writers, with the exception of blog posts telling personal stories from people affected by MS.
We identify information needs through consultation with service users and health professionals, in the context of existing resources from a variety of sources.
When producing a new piece of information or reviewing an existing piece, we always review the recent scientific literature on that subject, and assess the evidence for different claims or points of view. We search peer-reviewed journals using portals such as MedLine/PubMed.
We seek expert advice from health professionals who are specialists in MS or the specific topic for each information resource. This might include MS specialist nurses, physiotherapists, neurologists or other specialists. We involve health professionals in the whole process of information production, from identification of need through to final review. We have an Expert Review Panel who read and review our material regularly.
We seek input from people affected by MS in meeting their information needs, including what they need, how they need it and how it should be presented. Our Service User Reviewer Panel give comments before, during and after the production process, and we are always seeking to broaden the range of people with MS that we consult.
We offer opportunities for people with MS, their carers and friends to suggest changes and additions to our information by promoting new and existing resources via social media. We monitor feedback closely.
All of our information web pages include the option to give feedback via the Hotjar function. Service users can give as much or as little information as they like in this form, and the responses are collated and reviewed weekly. Where readers have opted to give contact details, we respond directly to them to thank them for their feedback and explain any action we have taken as a result. These responders are invited to join the Service User Reader's Panel.
We review and update all our information on a three year cycle. This includes information on web pages, our publications, and our audio and video content. Expert contributors are invited to comment on their input in our material to identify if and where their point of view has changed.
Patient Information Forum
The MS Trust is proud to be a member of the Patient Information Forum (PIF) a network of organisations involved in producing high quality health information and support. PIF offer events, conferences and online resources to help improve health information. Member organisations include hospitals, charities, NHS consultants and medical companies.
As PIF members, the Information Team benefit from training and networking opportunities. We can compare our approach with other organisations that provide health information and discuss issues with other members. Being members does not indicate that PIF have evaluated our information or endorse it. In 2020, a new PIF quality mark will be launched that will indicate endorsement of high-quality evidence-based information and support, and the MS Trust will be working actively to earn that accreditation.
MS Trust resources, such as the MS Decisions online tool, have been selected as case studies to demonstrate good practice at PIF consultations and events.