Introduction

1. Patient and Carer Information: Can they read and understand it? Rawlings D and Tieman JJ Palliative & Supportive Services, Flinders University, Adelaide, South Australia Introduction Palliative care will affect most people at some stage whether as a patient, carer, family member, neighbour or friend. Each of these people may need different information at different times. While it is important to provide good quality information, it is also important that the content can be easily understood¹. Health literacy is an important issue. It is defined as the knowledge and skills required to understand and use information relating to health issues. The Adult Literacy and Life Skills Survey, conducted in Australia in 2006, showed that 59% of adults had less than adequate literacy and health literacy skills². This means they would have difficulty with tasks such as locating relevant information on a bottle of medicine or understanding the maximum number of days that their prescribed medicine can be taken. A study of online palliative care documents included in HealthInsite, an Australian consumer resource, found that around 60% of documents would require some University level education to read. Reading levels for 40% of the retrieved items were seen to be as complex as reading tax legislation!³ Content Author A project team member is nominated as the section author. Team members attend training workshops on writing for the web. The content author is supported by an Advisory Group. This group includes representatives from Carers Australia, the Consumer Health Forum, palliative care nursing and social work, and the Federation of Ethnic Communities’ Council of Australia. End User Engagement Users of the section are invited to provide feedback through newsletters. National Advisory Group members are invited to seek feedback from their groups and to provide feedback. Information from evaluation projects is considered. End users are included in the Review Group. Feedback from end users led to the inclusion of more visual images, changes to page layouts, changes to the content architecture, and new content. Testing Readability Readability formulas remind us that patient information should match the reading skills of the intended user. CareSearch uses two simple measures, the Flesch Reading Ease and Flesch-Kincaid Grade Level. These scales look at the average number of words per sentence as well as the average number of syllables per word. By employing these formulae, the content author can modify the length of sentences and substitute shorter words, which in turn helps to make a simpler piece to read. Page Formats The Review Group was provided with options for page layout in the revised section. Review Process All content is examined and finalised in conjunction with the Review Group supporting the content author. The materials is also seen by the National Advisory Group. Specific content can be sent to the relevant external agency for formal review (eg organ donation). Results Quality processes are improving the presentation and usability of the For Patients and Families pages. This redevelopment has included reducing readability scores, new page structures with larger font sizes, and adding in other media such as videos. Using defined quality processes increases the likelihood of producing materials that can be understood by patients and carers. The updated consumer pages will be released for National Carers Week, October 2013. Conclusion Online palliative care information can help support patients and families at the end of life. Having trustworthy information can help encourage involvement in decision making. Processes need to be in place to ensure that information is current, reliable and easy to understand. References: ¹Walsh T and Volsko T (2008) Readability Assessment of Internet-Based Consumer Health Information Respiratory Care 53 (10) :1310 -1315 ²ABS, Health Literacy, Australia 423 3 . 0 200 6 ³Tieman J 2011 Investigating barriers to accessing online palliative care information, PhD Thesis, Flinders University For further information contact: deborah.rawlings@flinders.edu.au • Methods • CareSearch has developed quality processes to guide the development of content for different audiences. • Strategies that are used to improve communication include: • Training page authors in web writing • Using readability assessment processes and scores for content pages • Seeking input and feedback from intended page users, such as consumers • Undertaking formal peer review • Developing style templates for online presentation • Conducting usability testing, as appropriate. • These processes are being are applied in the redevelopment of the For Patients and Families section of the website.