Consumer-led design of patient resources: a qualitative study of cancer resources — ASN Events

Consumer-led design of patient resources: a qualitative study of cancer resources (#297)

Alyssa White 1 , Sandy McKiernan 2 , Carol Chenco 3 , Eliza Turnbull 4
  1. Cancer Council NSW, Wooloomoolloo, NSW, Australia
  2. Cancer Information and Support Services, Cancer Council WA, Perth, WA, Australia
  3. Centre for Behavioural Research in Cancer, Cancer Council Victoria, Melbourne, Victoria, Australia
  4. Marketing and Brand, Cancer Council Australia, Sydney, NSW, Australia

• To identify patient/carer feedback to printed cancer information.
• To actively involve consumers in the design criteria for one national suite of resources for people affected by cancer (post diagnosis).

Six focus groups of cancer patients and carers from SA and Victoria (n43), including two rural groups, were held in 2009 to review sample publications from various state Cancer Councils, Canadian Cancer Society, Marie Curie and MacMillan. The resources were set out on a table for initial impressions, and then the patients and carers participated in a two-hour moderated focus group using semi-structured questions.

Analysis of the focus group transcripts indicated that Cancer Council is seen as a supportive and trustworthy organisation that produces credible and accurate cancer information. Respondents identified several important criteria for printed cancer information: clearly identifiable brand and associated bright colour use; simple design and masthead with no inclusion of unrelated images or pictures of people; A5 format for ‘in the bag’ discretion with legible text size; inclusion of visual diagrams for complex information, but limited use of cartoons; clear headings, contents page and logical content arrangement; summary points and highlight boxes; no expensive production or paper; ongoing consumer review involvement.

National design and editorial style guides were produced based on findings from the focus groups and related research (“Literature Review: Current recognised standards for the development of patient and carer health information resources 1999-2009”: Chenco, C., White, V., 2009; “Research to assist in the development of a national ‘house style’ for Cancer Council Publications”, Alan Jacobs Research Associates, 2010).
The style guides have been used to publish 30 booklets for people affected by cancer, which are distributed by all state and territory Cancer Councils (in excess of 500,000 distributed 2012-13FY).
A broader readership survey and an e-book pilot are both being undertaken in 2013-14.