National health literacy programme for people living with IBD

National health literacy programme for people living with IBD

The aim of the CCA IBD project is to implement the Optimising Health Literacy and Access (Ophelia) process over 3 years to collaboratively codesign ways to improve delivery of information, services and resources for people with IBD and their carers.

Authors: Melanie Hawkins, Wayne Massuger, Christina Cheng, Roy Batterham, Gregory T Moore, Simon Knowles, Ranjit G Nadarajah, Leanne Raven, Richard H Osborne


Non-government organisations (NGOs) represent the interests of the communities they serve, whether this be locally, nationally or internationally.1 The role of a community sector NGO is to give voice to its community through citizen engagement, community development, advocacy and provision of information and services.2 The people represented by NGOs are often underserved or experiencing vulnerability, including people living with chronic health conditions, and research efforts are often met with the difficulty of reaching those most in need.3 4 A recent quality of care initiative has been undertaken by Crohn’s & Colitis Australia (CCA)5 to apply health literacy principles to better understand the experiences of people living with inflammatory bowel disease (IBD) and address the priority action to improve patient knowledge, as identified in the Australian Government’s IBD National Action Plan 2019.6–9 CCA is a national Australian NGO that represents and provides services to people with IBD. However, access to IBD information and care is inequitable, and CCA is aware that there are many Australians with IBD who are not reached by current communication and engagement activities.8 10

IBD in Australia

More than 85 000 Australians live with IBD, a group of chronic relapsing gastrointestinal disorders,11 12 the two main forms of which are Crohn’s disease and ulcerative colitis. IBD can be diagnosed at any age but most frequently between the ages of 15 and 29 years.13–15 Symptoms can be severe and debilitating, and can cause lifelong effects on individuals’ physical, emotional and social well-being, especially for young people and other vulnerable populations. Due to the nature of IBD, life-long management is required, and medical and lifestyle interventions can be complex and intrusive on people’s ability to live their life in the way they wish.16–19 Optimal self-management of health related to IBD often relies on the capacities of individuals, their engagement with healthcare professionals and the expertise of the not-for-profit organisations (such as CCA) that people depend on for multidisciplinary support, information and resources.

People living with IBD seek information relating to their disease and its management.20 21 It is known that people with IBD report a need for more information from their health professionals about medications and side effects, diet, disease complications and how to access IBD nurses.22 23 Studies also show that information to support self-management is needed for accessing advice and support from allied health professionals (eg, psychologists and dietitians) and IBD communities, including those that are based online.22–24 It is also important to recognise that information needs depend on several factors, including the stage (eg, prediagnosis and postdiagnosis) and status of disease (eg, active and remission).22 Despite the importance of these information needs, people living with IBD report that access to information is lacking, especially for people experiencing vulnerability (eg, young people).23 25

Self-management efforts are likely to be hindered by patient-related issues including health literacy or system-related issues such as services being perceived as not accessible or not responding to people’s needs. In addition, self-management may also be affected by the COVID-19 pandemic. This includes concerns relating to accessing medical care and medications and fears about being susceptible to getting COVID-19 while taking immunosuppressive medications. CCA is well placed to support people with IBD to manage their condition throughout their lives through improving IBD health information materials, services and resources and by being responsive to the health literacy needs and strengths of the IBD community.

Crohn’s & Colitis Australia

CCA is an Australian not-for-profit organisation that seeks to empower people to live life to its full potential as the search for causes and cures continues. As a community organisation that undertakes a comprehensive range of activities for and on behalf of people living with IBD, CCA provides information, education, support services and advocacy for people with IBD and their families or carers. It is an NGO that engages with the IBD community across the lifespan and operates in partnership with clinicians, government and industry to generate system change for improved quality of care, raise awareness of the IBD lived experience, and build research capacity in the search for a cause and cure.

The Optimising Health Literacy and Access (Ophelia) process

The Ophelia process26 27 is a codesign approach that uses multidimensional health literacy or digital health literacy questionnaires, the Health Literacy Questionnaire (HLQ)28 and the eHealth Literacy Questionnaire (eHLQ)29 to investigate the health literacy strengths, limitations and preferences of individuals and groups of people. The Ophelia process explores ways in which materials, resources and interventions could be designed and disseminated to be accessible, sustainable and useful solutions for the people who need them. It is also a model of collaboration that builds on local knowledge and wisdom to develop health literacy-informed interventions directly based on the needs identified within a community.30–34 A capacity building approach is used to support and enable organisations and health services to identify health literacy strengths and needs, codesign and develop interventions, and then implement and evaluate those interventions.35–37

Ophelia has three phases (figure 1).26 27 All phases involve close collaboration with key stakeholders including community members and frontline practitioners.26 27 Each Ophelia project seeks to improve health and equity by increasing the availability and accessibility of health information and services in ways that are appropriate to people’s diverse circumstances, strengths, limitations and preferences. The Ophelia process has previously been used in Australia31 32 37 38 and internationally,30 35 39 40 as well as being the foundation of the WHO National Health Literacy Demonstration Projects, conducted under the auspices of the WHO Global Coordination Mechanism on the prevention and control of non-communicable diseases (

Full research article here.