HEALTH LITERACY FORUM: Informed consent issues

1. HEALTH LITERACY FORUM: Informed consent issues PROFESSOR HELEN KELEHER, MONASH UNIVERSITY 15TH MAY 2012

2. Questions • What are the issues in informed consent ? • What are the barriers to giving informed consent? • What is the reading age required for the informed consent forms used in your organisation?

3. Readability Assessment • Readability of the information is a factor in gaining informed consent • –most people prefer less complex language esp when they are under stress • Plain language is generally clearer and easier to understand

4. Readability Assessment Tools • Flesch-Kincaid Reading Level: An index that gives the years of education required to comprehend a document. The Flesch Grade Level readability formula takes into consideration the total number of words, the number of syllables, and the total number of sentences in a piece of writing. • Flesch Reading Ease: Indicates on a scale of 0 to 100 the difficulty of comprehending a document. It is calculated using sentence length and the number of syllables in a word. • Simple Measure of Gobbledygook (SMOG): Estimates the years of education a person needs to understand a piece of text focusing on sentence and word length. Reading level is calculated using the number of polysyllabic words in a set number of sentences. • Gunning Fox Index: Estimates the years of formal education needed to understand the text on a first reading. Texts for a wide audience generally need a fog index less than 12. Texts requiring near-universal understanding generally need an index less than 8.

5. Informed consent is a process…. • So how can people with low literacy give fully informed consent? • http://www.templehealth.org/ICTOOLKIT/html/ictoolkitpage16.html

6. Microsoft Word has a readability tool available as follows but only measures grade-level to Year 12: • Under the “Tools” menu, select “Options.” • Click on “Spelling & Grammar” tab. • Check “Show readability statistics” under the “Grammar” heading. • This function provides readability scores using the Flesch-Kincaid Reading Level tool and the Flesch Reading Ease tool.

7. Suitability of Assessment Materials (SAM): Print material is ranked against 21 criteria using a 3 point likert scale based on 6 factors : • Content • Literacy demand • Graphics • Layout and typography • Learning stimulation and motivation • Cultural appropriateness

8. PRISM Readability Toolkit The PRISM recommendations for editing: • Replacing jargon and other complex terms with familiar vocabulary • Creating single-topic paragraphs and concise sentences • Using reader-friendly formatting • Checking the reading level—achieving a target of 8th grade or below in most cases.

9. Useful resources • PRISM: Quick Reference Guide for Improving Readability. • Document Readability Calculator • http://www.online-utility.org/english/readability_test_and_improve.jsp • Text Readability Scores • http://www.addedbytes.com/lab/readability-score/ • The Readability Test Tool • http://www.read-able.com/