Bringing together patients' perspectives on eHealth and mHealth

Patient Information – Patient Group Provides Leaflet Service

You open up your medication. You start to read the leaflet. Your eyes glaze over as you squint through folded pages of small, jargon-filled text. Research shows that those who persevere with reading the leaflet can actually become more anxious and less compliant with treatment.

What roles can patient groups have in closing the comprehension gap on the Patient Information Leaflet (PIL)?

The Australian experience

In Australia, consumer groups helped drive commitment to mandatory standardised Consumer Medication Information (CMI) from pharmaceutical companies. This ensures that treatment information is written in a standard format across all medications, grouped under clear headings.  

Although the content is as close as possible to each pharma company’s Patient Information Leaflet, in testing the CMI approach was found to be much more readable and accessible. That’s a key need when most PILs are well beyond the health literacy of most of us.

It’s been a long journey since the 1990s in creating and enhancing the CMI model. However, the battle for Australian consumer groups continues with low awareness by patients, and patchy implementation by doctors and pharmacists.  

However, consumer medication information is more widely available than ever, including: 

  • printed on request when drugs are prescribed or dispensed at pharmacies
  • downloadable from Australia’s Therapeutic Goods Administration (TGA)
  • searched and saved on a consumer app, MedSearch.
Empowering patients with visual needs

Many communities are cut off from equal access to information about treatments. For example, the last thing you want to do is use Google Translate to put a Patient Information Leaflet into your own language. Equally, for people with visual needs, running the text of a PIL through a screen reader can be far from user-friendly.

Many countries have laws to ensure that PILs are easy to use and comprehensible, but the final result proves that adherence to these regulations is pretty poor.

The UK patient organisation, the Royal National Institute of Blind People (RNIB) partnered with the UK’s not-for-profit company Datapharm, which collates the electronic Medicines Compendium (the eMC).  This brings together in one site all approved and regulated medical prescribing and patient information in the UK.

The RNIB and eMC ensure that pharma meets it commitment to give partially-sighted or blind people access to their Patient Information Leaflets, across a range of formats including:

  • On the eMC website
  • Large print versions
  • Braille
  • Audio CDs
  • Via the RNIB’s free Medicine Leaflet line.

NEXT STEPS:

Compare standard product information with easier to use Australian Consumer Medication Information leaflets at…

Click here

Read the review of the MedSearch app at myhealthapps.net…

Click here

Download the app from the Australian Therapeutic Goods Administration…

Click here

Find out more about the eye health information services offered by The Royal National Institute of Blind People (RNIB) at…

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