Ask the Nurse: Recognising trustworthy myeloma information

Often, diagnosis is the first time most patients and their loved ones have heard of myeloma. It is normal to have a lot of questions and want to understand more about what you can expect.

When it comes to health information, only your healthcare team can give you myeloma advice specific to you. Remember that it’s okay to ask questions, and if you have any concerns, you don’t have to wait until your next appointment to speak to them.

However, more general health information can help you to feel informed and empowered for future decisions involving you and myeloma. This means it is important to feel able to trust the information you are using.

This month, we are addressing some of the questions we receive on the Myeloma Infoline that will help you to find trustworthy and supportive myeloma information.

What is bad information?

Disinformation and misinformation are the two main types of false health information:

  • Disinformation is false information created and spread to mislead you on purpose
  • Misinformation is unintentional false or misleading information, shared and spread by people because they believe it

There are some key signs which can help you recognise bad information.

Dramatic and attention-grabbing statements can sound exciting but if there isn’t good evidence to back them up, the information probably isn’t trustworthy.

Small trials, surveys or studies can offer useful contributions to clinical and scientific understanding but usually, a bigger sample size (more people taking part) means more comprehensive and reliable data.

Stories from other myeloma patients or family members can be reassuring and help you feel more connected. However, be cautious about making decisions based on one person’s experience. People can experience myeloma complications and respond to treatments in very different ways.

Keep reading to discover some of the questions that help identify good information.

Who created the information?

Knowing who created the information helps you judge how trustworthy it is.

Health information can be provided by trusted, reliable organisations like the NHS, who have an evidence-based approach.

If you don’t recognise the author, check if the information is backed, or endorsed, by recognised experts or trusted organisations such as National Institute for Health and Care Excellence (NICE) or Public Health England/Scotland/Wales or Public Health Agency (Northern Ireland). This means that an expert-review has confirmed the information is accurate and trustworthy.

At Myeloma UK, we are committed to producing high quality and trustworthy myeloma information, that is clear and easy to understand. Our patient information bears the PIF TICK, indicating it has been independently assessed as evidence based, using plain language and produced by trained staff.

You can read more about what the PIF TICK means here.

What is the purpose?

Good health information should provide you with balanced information that helps you to understand myeloma, its complications and treatment options. It can support you in making decisions around treatment and care.

If the information appears to be trying to sell you something, it is sensible to be cautious about the reliability of the information.

It is unusual for most medical and scientific information to completely reverse without warning. If information is very different to everything else you know, especially if it contradicts advice from your healthcare professionals, there may be another motive behind the work.

Is it balanced?

Be wary of information that emphasises a single choice or only tells you about the benefits or the risks. If information is biased, it does not always mean the information is false or untrue, but it may not give you the full picture.

Balanced views empower you when making your own informed decisions.

It is good to think about where the authors get their information from too. Look for a reference list, so you can track the evidence their information is based on. Some information may include contact details for you to get in touch and find out more about resources used.

Is it up to date?

Health and medical understanding changes over time so it’s important that information is up to date. Check for a publication date which can tell you when the information was created or last updated.

Trusted sources of health information should also include a review date – this lets you know how regularly the information is updated by the provider.

Is the internet/social media a safe place to find myeloma health information?

The internet and social media provide quick access to knowledge, news and information and helps us connect with others.

However, not all information published online is accurate or reliable. The questions above can help you to work out what to trust online.

On social media, it can be easy to assume that you can trust information shared or posted by your own friends and contacts. They may have shared the information in good faith, but it’s still sensible to ask yourself who originally provided that information too.

Run through the questions above and ask yourself if you would trust the information if it had not been shared by a friend.

What information do Myeloma UK offer?

Myeloma UK provide information for patients,  family and friends on our website. You can choose to explore information based on whether you are newly diagnosed, relapsing, in remission, or a family member/carer.

We are also dedicated to providing free patient information booklets on a wide range of topics, which can all be found online in our Information Hub. We do offer some booklets as a physical copy – fill in this form or contact us to place your order. These are all developed in collaboration with patients and regularly reviewed to make sure they are up to date and relevant for you.

Our Myeloma Information Specialists are here to provide information and support. You can get in touch by calling the Myeloma Infoline on 0800 980 3332 (UK) or 1800 937 773 (Ireland) Monday-Friday, 9am–5pm, or by using the Ask the Nurse email service.

Get in touch with us through the Myeloma Infoline on 0800 980 3332 (UK) or 1800 937 773 (Ireland) or by using the Ask the Nurse email service.

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