In the rare disease world, communication is king. Patients must communicate with those around them in order to get support, much needed help and to raise the profile of their disease. For rare disease patient groups, effective communication is just as important.

Without effectively communicating to those who hold a real stake in the work we do, the AKU Society would not be able to operate successfully. In order to do this, the AKU Society team actively looks into how we can improve the way we communicate with those who use our services and who support us in our vital work.

Last Wednesday, Lydia and Ciarán travelled down to London to exhibit at the Royal College of Physicians, where the Patient information Forum (PIF) were holding their Annual Conference for People Working in Health and Care Information Support. PIF understand the importance of effectively communicating health and social care information in a way that promotes understanding and is accessible to everybody who needs to use it. They are always looking for ways they can help improve how health information is targeted and how it can made even more accessible.

The theme of the conference was ‘power of partnership’,  aimed at  encouraging inclusive, mutually beneficial working relationships across a myriad of sectors that improve the quality of health information and the experience of those who access it.

While Lydia and Ciarán were there to promote the hard work of the AKU Society, they also took the opportunity to talk to other exhibitors who were there to showcase how they can help patient-centered organsations improve their health information. Like Videum, a platform that allows and helps institutions  who work in the health and care sector, upload videos that include interactive links and text that explain elements of the video in more detail. Vital if the video raises a question that can be answered straight away by text on screen.

We also spoke to the Information Standard, an organisation, set up by NHS England, which promotes itself as the measure of what the gold standard for health and care information is. Seeing the Information Standard ‘tick’ on the website or leaflets of a company that produces health information, shows that the source can be trusted.

In order to gain Information Standard accreditation, companies have to go through a rigorous process that shows they produce clear and accurate information, that is impartial up to date

and with clear references. In order to do this, Information standard members have to have a well-documented process of how they produce information. That way all information has gone through the same production process, leading to the same standard of quality throughout all information produced.

We are currently in the middle of applying for Information Standard accreditation, so look out for their logo on our website and any new leaflets soon and be safe in the knowledge that the information you are reading has been vetted to make sure it can be trusted.

Finally, we are also working on a new AKU Society website, which will be live very soon. We hope that this new website will be much clearer to read and will encourage more people to learn more about AKU. We will be looking for people to user test the site, so contact if you’re interested in getting involved.