Here are the slides and script from the consumer health information presentation. This can also be downloaded as an accessible Powerpoint

Slide deck contents

Introduce yourself and let participants introduce themselves.

There are the five questions that we will aim to answer in this session.

  1. What is consumer health information?
  2. What are the issues around consumer health information?
  3. Why is good consumer health information important?
  4. What is good consumer health information?
  5. How and where can I find it?

Ask participants to explain what consumer health information is. What do patients need to know?

If there are enough participants, get three of them to role-play as a clinician, a patient, a carer.

What do these three different groups want from patient information? What do they need to know? What does the clinician want the patient and carer to know?

The aim of this is to get them to consider the subject from different angles. They will be most familiar with the clinician’s perspective, so do aim to get them to take the patient’s or the carer’s view.

They might find that there is a lot of overlap between the three, they might also find that thinking about it from a patient’s or carer’s perspective makes them aware of things they hadn’t considered from the clinician’s perspective.

Some things they might come up with

A clinician

I have just diagnosed a patient with a health condition and I want to give them information that I think they will need and that will help them cope with the condition after they leave my office/surgery. I want to give them something short, otherwise they won’t read it. It should be easy to understand and easy and fast for me to get to.

A patient

I have just been diagnosed with a health condition. I want to know how this will affect my daily life, whether there are any activities I should stop doing for example, what medications I need to take and when, how they work, what my condition is, how it will affect me in the future, who I should speak to if I get worse or am experiencing side effects from my medication, what I can do to prevent it from happening again/getting worse.

A carer

I’m looking after someone with a health condition. Apart from wanting to know what the condition is and how it affects them, I want to know how I can best support them, what support they are likely to need from me now and in the future, if I can access any financial help to help with the cost of looking after them or to help me get a break from caring on occasion.

Some figures

36% of patients with a long-term condition, over 5.5 million people, disagree that they were given helpful information about their condition when they were first diagnosed.

21% of patients, representing over 3.2 million people, disagree that they have enough information to feel confident in discussing decisions about their care with their doctor.

29% of patients, over 4.4 million people, feel that their views are not taken seriously by their doctor.

These are some serious numbers.

If consumers/patients don’t get good information from you, where do they go? What do they do? (Answer: they search the internet and find all manner of weird and wonderful things). This leads directly into the next slide, which deals with issues surrounding patient information.

Issues around consumer health information

This brings us neatly to the next slide: let’s talk about some of the issues around consumer health information.

The images are meant to provoke thought about potential issues with consumer health information/information that is accessible to patients. Ask participants to name some of the issues such as

  • lots of misinformation about health
  • information written for healthcare professionals not easily accessible to patients (written in language that laypeople cannot understand; behind paywalls)
  • healthcare professionals not knowing where to look
  • the human factor: communication issues – fact against fiction doesn’t always work if the fiction is deeply entrenched (autism & vaccines example); people may feel that you’re being dismissive if you give them a booklet/printout, especially if you view it as a substitute for talking to them
  • bedside manner is still important (though beyond the remit of the library to teach!)

Good consumer health information

“Let’s think about the qualities of good patient information.”

Ask people to finish the sentence. You might want to use post-it notes and a flipchart for this.

Some words/phrases that you want to look for:

  • trustworthy
  • understandable
  • well-researched
  • easy to read
  • short
  • easy to find
  • free
  • tells you where it came from
  • links to further information if needed (who to speak to/where to find out more)
Title: Information standards. Images on page: Information standard check logo, Crystal Mark seal of approval
The Information Standard logo and the Plain English Campaign's Crystal Mark logo

These are two logos to watch out for when you are looking for consumer health information.

Crystal Mark – from the Plain English Campaign (opens in new tab)

For any kind of information (not health-specific)

The Crystal Mark is the Plain English Campaign’s seal of approval for the clarity of a document. It now appears on over 22,000 different documents in the UK and in other countries including the USA, Australia, Denmark, New Zealand and South Africa. It is the only internationally-recognised mark of its kind.

Launched in 1990, and the first mark of its kind, the Crystal Mark is now used by over 1600 organisations who want to provide the clearest possible information.

Crystal Mark holders (opens in new tab)

Information Standard – About TIS (opens in new tab) - health-information specific

NHS Choices is accredited under this, as are lots of charity websites

Any organisation achieving The Information Standard has undergone a rigorous assessment to check that their information production process generates high quality information. Members of The Information Standard also obtain the right to display the Standard’s logo on their information which acts as a quality mark and helps people easily identify reliable, high quality information.

List of certified organisations: certified organisations in TIS (opens in a new tab)

Finding consumer health information

All these are good sources of consumer health information. It’s not really important which site you use as long as you heed the basic principles/it fulfils the need.

All these are good sources of consumer health information. It’s not really important which site you use as long as you heed the basic principles/it fulfils the need.

Emphasise that communication skills are still needed.

Give out tasks for individual websites. Ask participants to solve the query. They will have ten minutes to do it. After that they will have to come back and tell the others about what they found.

A task for attendees

Hopefully people are now working on their tasks. Discussion should focus on their experience:

How helpful would this information be in a clinical situation?

Do they trust the website/source in question? Why/why not?

If they were the patient and were given this information, what would their assessment of it be?

Questions

You might want to ask them if they have any further questions. A good way to get people to ask questions is to ask them to chat to the person next to them about what they’ve found for a minute, then after a minute ask if they have come up with any questions.

Thank you

 

Contact Lisa Burscheidt on [email protected] or Audrey Keep Library on [email protected]