9th July 2021 // Alice Baron
As I sat there waiting for the specified 15 minutes after receiving my COVID-19 vaccination, I read through the information booklet I was given several times (choosing a venue with no phone service seemed like a smart, if unintentional, way to force people into reading the information) and it struck me just how many people had done the same. I could see everyone around me holding on to the same little booklet, and I knew that everyone who had sat there before had also held on to a copy of that same booklet. A piece of health information for everyone.
This year, the whole world has needed health information like never before. Over the last year, everyone has had questions about COVID-19 from what it is and how it may affect us to vaccines and their effectiveness.
This has caused the whole population to realise the need for health information in a way not fully appreciated before.
Although this new focus has increased the amount of health information out there, it’s not all been good information. Health information is complicated and it can be done badly – I’m sure almost all of us can think of an example. But we deserve better. You as myeloma patients, carers and loved ones deserve better.
I believe that no matter what information people need – whether that’s about vaccinations, public health initiatives or myeloma – they should be able to easily access high quality and trustworthy information that meets that need.
Good health information is clear. It’s simple. It’s easy to understand. There shouldn’t be jargon that alienates people and makes them feel stupid for not understanding. Information providers need to remember that it may the first time someone is hearing about a condition. Many myeloma patients, for instance, have never heard the word myeloma until their diagnosis. Clear, concise and simple language ensures that everyone can understand.
But information is not just about the words. The format and way information is presented needs to be accessible too. That’s why we have a strive to offer information in a range of formats, from Infopacks and Infoguides, to videos, webinars and a phone line.
It’s about opening up information for anyone and everyone that needs it.
Health information needs to be evidence based and validated by science and experts. It should be factual, balanced and not have an agenda. Where there are grey areas or unknowns, a balanced, honest overview should be presented to help you make your own mind up and understand the context.
We base all our information on official guidelines and the latest research and we follow best practice to ensure it’s factual. We work with healthcare professionals and experts in their fields to review and update our information to ensure it can be trusted.
There’s no one size fits all when it comes to information and information needs are dynamic; they’ll change as you change.
Health information needs to be tailored to your situation and your needs. Information should meet you where you are – relevant to your age, gender, situation, background and condition – so it doesn’t overwhelm you or leave you needing more.
We work with a panel of patients and carers who advise us on what we do and what we should be doing. We listen to their opinions, needs and insight to ensure our information is fit for purpose and meets the range of needs of everyone affected by myeloma and its related conditions.
Ultimately, information done right is empowering. It should equip you with the knowledge you need and act as a tool to help you make decisions, prepare for the future and live well today. Health information should equip and inform, empower and educate.
At Myeloma UK, we’re committed to producing health information that meets the criteria for quality health information. Because of this, our information attained the PIF TICK accreditation last year. If you want to find out exactly what is involved in attaining and maintaining this quality mark, the new PIF TICK website explains it in detail.
I hope that wherever you are and whatever situation you’re in, you can trust in the information from Myeloma UK. We’ll keep on doing what we can to ensure you have the information you need, and if we’re not meeting the mark, please tell us. We want you to feel empowered and know that we’re here to support and inform you every step of the way.
I hope that every health information producer will work to the same goals, so no matter which little booklet you’re holding (or not, if that’s not the best format for you), you’ll find the quality information you need.