Evaluation of online cancer information for Aboriginal and Torres Strait Islander peoples: a systematic environmental scan

Abstract

Background

Aboriginal and Torres Strait Islander peoples experience greater cancer incidence rates, unmet information needs, and poorer cancer outcomes compared to the general Australian population. This environmental scan evaluated cancer websites for Aboriginal and Torres Strait Islander peoples in Australia.

Methods

An environmental scan using 8 Google searches was conducted in July 2025 to identify cancer-related websites targeted toward Aboriginal and Torres Strait Islander peoples in Australia. Patient-facing resources were assessed for readability, understandability, and actionability using grade level assessments of readability and the Patient Education Materials Assessment Tool. Cultural relevance was assessed using an Aboriginal cultural relevance measure.

Results

Of 239 search results, 12 websites were patient facing and contained material for Aboriginal and Torres Strait Islander readers, primarily on common cancers. Readability generally exceeded the recommended Grade 6 reading level, with only one resource below Grade 6 level. Resources were considered understandable with scores of >80% for 7/12 websites (range 50-100%); 2/12 included summaries and 7/12 plain language. Actionability scores ranged from 0% to 100% (M = 63.6%, SD = 37.0), with wide variation. Cultural relevance averaged 3.8/7 (SD = 1.9) with only one resource meeting all criteria (7/7). Most lacked cultural specificity and did not provide Aboriginal and Torres Strait Islander languages translations.

Conclusion

Our results necessitate co-design with Aboriginal and Torres Strait Islander peoples for resources appropriate to community needs and including information on a broad range of cancers. Websites should optimize the readability and cultural safety of information for Aboriginal and Torres Strait Islander peoples seeking cancer information.

Introduction

Aboriginal and Torres Strait Islander (Australian First Nations) peoples are the First Peoples of Australia, with diverse cultures, languages, and strong connections to Country, family, and community. They experience significant inequities in health outcomes, compared to non-Indigenous Australians due to the ongoing impacts of colonization, racism, social and economic disadvantage, and barriers to culturally safe health care, including a disproportionate burden of cancer morbidity and mortality.^1-3 Between 2012 and 2016, Australian First Nations peoples were 1.4 times more likely to be diagnosed with cancer compared to non-Indigenous Australians, and between 2016 and 2021 the age standardized cancer mortality rate for First Nations people increased by 15%.^1,4 Australian First Nations people are also more likely to be diagnosed at later stages of cancer and have lower participation rates in cancer screening programs.^5,6 These inequities affect not only individuals diagnosed with cancer, but families and carers assisting in providing care and support.⁷ There remains a dearth of cancer resources that are readable, culturally safe, and tailored to the needs and preferences of Australian First Nations peoples.

Inequalities in health outcomes amongst colonized peoples are linked to the historical trauma of colonization which continues to impact the health and wellbeing of First Nations peoples.⁸ Intergenerational trauma, disruption of cultural identity, family, kinship, and connection to Country have a role in First Nations peoples’ social determinants of health.^9-11 Structural and systemic barriers, including economic, social, political, and cultural factors, continue to restrict access to health services, information, and support.^12-14 Factors such as systemic racism, cultural alienation, and intergenerational trauma are associated with lower health literacy rates.¹⁵ Thus, generalized information on cancer may not be culturally appropriate or accessible to Australian First Nations populations.

Accessible health information is central to patient-centered care as a facilitator of individuals’ understanding of and agency in their own healthcare.¹⁶ Tailored information about cancer across types and stages, along with access to medical, psychosocial, physical, and financial support, must be readable and understandable in order for patients to address information needs and foster actionability.^16-18 However, typically health information is written at a higher grade level than appropriate for the general population, impacting users’ comprehension and decision making.^19,20 These challenges are amplified for First Nations peoples, who require culturally relevant resources that address specific health barriers, including cultural and healthcare system barriers. Culturally-tailored resources must demonstrate cultural respect, harnessing person-centered and strengths-based lenses to ensure relevance and build trust with Australian First Nations users.²¹

Culturally appropriate patient education resources can enhance health literacy and improve engagement in health initiatives and participation in healthcare.^22-24 For Australian First Nations peoples, culturally safe care recognizes the importance of embedding Indigenous values, knowledge systems, and practices within healthcare resources and interactions.²⁵ Further, culturally safe communication is critical to empowering individuals in their health journeys, addressing historical trauma, and restoring trust in healthcare systems.²⁶ Despite the importance of culturally safe language and communication, there is a paucity of research that has quantified and synthesized the quality and relevance of online cancer information for Aboriginal and Torres Strait Islander peoples in Australia. Previous evaluations of websites have focused on general cancer resources, and none assessed whether resources were inclusive of First Nations communities.^27-29

The aims of this study were to:

1. Identify online resources providing cancer-related information specific to Aboriginal and Torres Strait Islander peoples, particularly relating to screening, management, treatment, information, and care.

2. Assess the readability, understandability, actionability, and cultural relevance and inclusiveness of online cancer health information resources for Aboriginal and Torres Strait Islander peoples.

Methods

Positionality statement

As a research team, we were conscious of the importance of our backgrounds and perspectives and reflexively considered how they might influence our approach to research. The authorship team includes Aboriginal (G.G. and C.J.) and non-Indigenous (C.M.S., D.I., M.B., H.D. and G.H.) researchers. We bring collective expertise in Indigenous health, public health, and psycho-oncology.

Search strategy

An environmental scan of grey literature was conducted to identify publicly available resources directly referencing Aboriginal or Torres Strait Islander communities either through culturally-tailored content, use of inclusive imagery, language, or by explicitly addressing the population. The review followed a systematic grey literature search method.³⁰ Ethical approval was not required as no participants were involved.

A search was conducted in January 2025 and repeated in July 2025, using incognito mode on Google Chrome to reduce the potential for search bias. Key search terms were developed to simulate typical search patterns of patients, based on our previous cancer environmental scans.^31-33 Eight searches were conducted and the first 3 pages of search results were screened, totaling 239 websites.³⁴ Each search result page showed 10 results with the exception of one page, where an advertisement was shown as a search result. Each website was screened with data extraction including the website title/organization, URL, a brief description of content, and the target population. Websites were evaluated for content relevance and suitability based on information provided and Aboriginal investigators C.J. and G.G. were consulted on refining the search and ensuring capture of any missing websites relevant to the environmental scan. Uncertain cases were discussed with the research team.

Eligibility criteria

Inclusion criteria required resources to:

1. contain webpages/sections specifically targeting Aboriginal and/or Torres Strait Islander and/or Australian Indigenous and/or Australian First Nations peoples;

2. be in webpage format or contain downloadable PDF materials; and

3. include cancer-related information.

Resources were excluded if they redirected users to external sources, that is did not provide information resources directly. In these cases, the linked sites were assessed for eligibility. Academic journal articles, videos, or standalone PDFs and information irrelevant to cancer or Aboriginal or Torres Strait Islander health were excluded (eg, statistics on cancer or information on arthritis).

Evaluation of patient information resources

Readability

A readability assessment was conducted using a publicly available readability calculator (https://readable.com/). For consistency, a section of the website was chosen that focused on a specific type of cancer (most often bowel or breast). If such a section was not available, a paragraph containing general content on cancer was selected to ensure assessment of a section that patients would be likely to read.³⁵ The calculator applied formulas based on word count, sentence length, and syllable count to determine scores for comprehension and understanding. Readability was assessed using 5 validated tools: Flesch-Kincaid Grade Level (FKGL), Gunning-Fog Index (GFI), Coleman-Liau Index (CLI), Simple Measure of Gobbledygook (SMOG) Index, and Flesch-Kincaid Reading Ease (FRE) score. The first 4 scales provide a grade level score of readability while the FRE provides a reading ease score. Once all scores were entered, descriptive statistics were calculated in Excel. The use of multiple readability calculators was used to minimize bias, consistent with other approaches to assessing readability.^14,31,36

FKGL, GFI, CLI, SMOG scoring is based on an American grade level of schooling. Grade 8 would be a readability score of 8.0 which is around reading skills level of 13 to 14-year-olds.³⁷ FRE scores range from 0.0 to 100.0, a lower score means a resource is harder to read.¹⁴ The target score for the “general public” is 65, equivalent to a FKGL grade level 6, meaning most people can understand the text.³⁸ In Australia, the recommended readability score is a FKGL grade 8 or an FRE 60.^39,40 However, it is estimated Aboriginal and Torres Strait Islander peoples may experience lower reading grade levels compared to the general population, thus a FKGL score Grade 6 is likely appropriate.^41,42

Understandability and actionability

The Patient Education Materials Assessment Tool for printable web material (PEMAT-P) is a reliable and validated tool⁴³ which was used to systematically evaluate the understandability (17 items) and actionability (7 items) of patient-centered educational materials.⁴⁴ Understandability refers to the extent to which users can interpret the material.⁴⁴ Actionability describes whether the guidance enables consumers to make decisions or take actions.⁴⁴

Each PEMAT criterion is scored either Disagree (0 points), Agree (1 point), or Not Applicable (item not included for scoring), giving a potential maximum score of 17 for understandability and 7 for actionability.⁴⁴ Understandability and actionability percentage scores represent the number of criteria scored as “agree” as a proportion of the total number of applicable criteria (scored as agree or disagree). Higher scores indicate the source is more understandable or actionable.⁴⁴ Previous studies considered a PEMAT score of ≥70% as a minimum threshold for understandability and actionability.^31,45 Two independent reviewers, including 1 cancer expert, assessed the resources and a moderator experienced with environmental scanning and cancer materials resolved any discrepancies in scoring.

Cultural relevance

Cultural relevance was assessed using criteria developed specifically to evaluate resources for First Nations peoples.^33,46 The resources identified were assessed against 7 items relating to the sensitivity and accessibility of material³³ (see Table S1). Each criterion was scored as either 1 (met) or 0 (met), and the scores combined to provide a cultural inclusiveness score out of a maximum of 7. Two independent reviewers, including 1 Aboriginal reviewer (C.J.), completed cultural relevance scoring and a moderator identified any discrepancies for discussion. Although the Cultural Relevance tool has not been widely validated, it was developed by a research team guided by a senior Aboriginal researcher and co-author GG to assess cardio-oncology patient education resources.^33,46

Results

A total of 239 search results were reviewed for eligibility. Of these, 12 (5.0%, N = 12) websites met the inclusion criteria (see Figure 1), these websites appeared a total of 107 times (44.8%) across search results. The remaining 132 (55.2%, N = 132) were excluded primarily due to being redirected to contact information or support services (7.6%, N = 18), or the resources not relevant to cancer or Aboriginal or Torres Strait Islander peoples (7.1%, N = 17.0). Among the 12 included resources, the majority focused on information related to breast (N = 7), bowel (N = 6), cervical (N = 6), and lung (N = 5) cancers, although 7 provided information on more than 1 cancer type and 2 provided general cancer information (see Table 1). Only 4 of the 12 included resources were primarily focused on First Nations peoples.

Figure 1.

Flow diagram of cancer resource identification and inclusion.

Table 1.

Types of cancer addressed across included online resources.

Cancer type	1	2	3	4	5	6	7	8	9	10	11	12
Bowel	✓ a	✓		✓	✓	✓	✓				✓
Breast	✓	✓		✓	✓		✓	✓	✓
Cervical	✓	✓		✓	✓	✓	✓
Lung	✓	✓		✓		✓	✓
Prostate	✓	✓		✓			✓
Bladder		✓		✓
Brain		✓
Cancer of unknown primary		✓		✓
Colorectal				✓
Endometrial		✓
Head and neck		✓		✓			✓
Kidney		✓		✓
Leukaemia		✓					✓			✓
Liver		✓		✓
Melanoma		✓		✓	✓
Lymphoma		✓		✓			✓			✓
Oesophageal		✓		✓
Ovarian		✓		✓
Pancreatic		✓		✓
Stomach				✓
Thyroid				✓
Uterine				✓			✓
General cancer information			✓									✓

^aGrey shading depicts each cancer type included in each online resource.

Readability

The readability analysis found the FKGL scores ranged from grade 3.4 to 15.3 (M = 9.1; SD = 4.2, median = 8). The GFI scores ranged from grade 3.7 to 15.2 (M = 9.5; SD = 4.0, median = 8.7). Similarly, the CLI ranged from 4.5 to 16.8 (M = 11.1; SD = 4.0, median = 10.64), and SMOG scores from grade 6.5 to 16.2 grade (M = 11.3; SD = 3.5, median = 10.1). When averaged across all scores, the mean grade score was 10.2 (SD = 3.9, median = 9.2). Median grade levels were consistently above Australian and international recommendations, as show in Figure 2. The FRE mean score was 52.3 (SD = 21.1, median = 59, range 21.2-79.3).

Figure 2.

Readability scoring—median reading grade of included websites. Note. The line for each instrument shows the median and box shows 25%-75% quartiles and whiskers are min and max. Reading grade levels can extend beyond grade 12 (high school completion). Levels 13-16 typically represent university-level text complexity, while levels above 16 indicate graduate/professional-level reading difficulty. Abbreviations: CLI = Coleman‐Liau Index; FKGL = Flesch‐Kincaid Grade Level; GFI = Gunning‐Fog Index; SMOG = Simple Measure of Gobbledygook Index.

Understandability and actionability

Understandability scores ranged from 50% to 100% (M = 80.3%; SD = 15.4%). The mean score was 80.3% and indicated good understandability.⁴⁴ Four resources scored 93.3%, 2/12 included summaries and only 7/12 were written in plain language. While this suggests a generally acceptable level of understandability, wide variation was evident (see Table 2). Actionability scores ranged from 0% to 100% (M = 63.6%, SD = 37.0). Although 4 resources had scores of 100%, 2 scored 0, with most websites lacking instructions and tools (eg, formulae for calculations, planning templates etc.).

Table 2.

PEMAT understandability and actionability scores.

All resources (N = 12)	Understandability	Actionability
Mean (SD)	80.3 (15.4)	63.6 (37.0)
Range	50.0 to 100.0	0.0 to 100.0
Individual resource scoresa
Resource 1	50.0	0.0
Resource 2	93.3	80.0
Resource 3	66.7	50.0
Resource 4	82.4	33.3
Resource 5	60.0	60.0
Resource 6	90.9	100.0
Resource 7	75.0	80.0
Resource 8	75.0	60.0
Resource 9	83.3	0.0
Resource 10	93.3	100.0
Resource 11	100	100.0
Resource 12	93.3	100.0

Abbreviation: PEMAT = Patient Education Materials Assessment Tool.

^aPatient Education Materials Assessment Tool.

Cultural relevance

The cultural relevance score ranged from 1 to 7/7 (M = 3.8; SD = 1.9, Median = 4). Only 2 of the 12 resources had information available in Aboriginal and Torres Strait Islander languages or offered a translation service. Secondly, there was a lack of culturally specific support for First Nations peoples with only 4/12 resources mentioning further support for First Nations cancer patients and carers (see Table 3). Only one resource (#2) met all criteria for cultural relevance and inclusiveness.

Table 3.

Cultural relevance scoring against criteria for each resource.

	Resource a
Cultural relevance criteria	1	2	3	4	5	6	7	8	9	10	11	12
1. Visual aids	✓	✓	✓	✓	✓		✓			✓	✓	✓
2. Data	✓	✓	✓	✓	✓	✓		✓	✓	✓
3. Design/artwork	✓	✓			✓	✓	✓			✓	✓	✓
4. Leadership	✓	✓	✓		✓	✓				✓	✓	✓
5. Language/translation		✓	✓
6. Strengths-based		✓	✓		✓	✓				✓		✓
7. Contact for support		✓	✓								✓	✓
Total (/7)	4	7	6	2	5	4	2	1	1	5	4	5

^aGrey shading depicts resources which include cultural relevance criteria.

Discussion

In our environmental scan, 12 websites were identified as providing cancer information for Aboriginal and Torres Strait Islander individuals. The websites were mostly focused on breast, bowel, cervical, and lung cancers which are among the most prevalent cancer types in First Nations Australians.⁴⁷ However, information was lacking on prostate and head and neck cancers, as well as less common types, such as sarcoma and brain cancer. The websites scored well for understandability per PEMAT thresholds, but readability remains a significant barrier, particularly consumer group calls for health materials at reading grade level 6.^44,48 Cultural relevance and inclusiveness scores varied with only one website meeting all criteria proposed by First Nations researchers.³³

Cultural relevance and inclusiveness scores were moderate with 8/12 resources scoring 4/7. While this measure is relatively new and without specified standards for adequacy, these results are similar to evaluations of gynecology cancer websites.⁴⁶ There was a lack of culturally specific support for Australian First Nations peoples with only 4/12 resources providing First Nations patients and carers contact information. Most resources failed to meet key criteria such as the inclusion of Indigenous-specific support contacts, involvement of Indigenous leaders in content development, or availability in Indigenous languages. Notably, our review focused on access to websites only, rather than downloadable only materials, to authentically replicate approaches.

The absence of language translation options is particularly concerning as it reduces the accessibility of information and opposes priorities of equity and access proposed by Cancer Australia, the Australian Cancer Plan,⁴⁹ and calls for action from Australian Government First Nations partners.⁵⁰ Resources that did include interpreter contact details were notably more culturally appropriate, yet only 2 were scored as providing language or translation options in our review. Given the diversity of cultural and linguistic backgrounds across First Nations communities, language and translation options would support equitable health communication, fostering health literacy, patient empowerment, potentially improving healthcare access and action.^51,52 Resources for First Nations Australians should be co-designed with input from Aboriginal and Torres Strait Islander, particularly those who identify barriers to cancer information and care, to ensure the material is culturally relevant and targeted at amelioration of lived experience barriers.

Australian recommended readability standard is a FKGL Grade 8 level or an FRE score of 60.^39,40 In comparison to recommended readability standards in Australia, using the FKGL (Grade 8), we found the majority (8/12) of websites were written at a level significantly above the grade suggested. Websites scored a mean FKGL of 9.1, which is considered “difficult to read.” This is significantly more difficult to read compared to the recommended Grade 6 readability level previously used in literature for First Nations audiences.^41,42 Previous environmental scans in oncology have also found websites to have readability scores exceeding the recommended grade level,^31,53,54 reducing patients’ understanding of cancer prevention, screening, and treatment- and help-seeking avenues.⁵⁵

A PEMAT score of ≥70% is a minimum threshold for appropriate understandability.⁴⁵ The range of understandability scores from 50% to 93% indicates substantial variability in potential ease of comprehension and navigation for users. Notwithstanding the range of scores, websites commonly lacked summaries and used a passive voice. These limitations are consistent with evaluations of other online health resources, suggesting avenues for improvement in the structure and presentation of public health information.⁵⁶ Combining visual elements with plain language may significantly improves message comprehension for First Nations individuals with particular potential for the health processes, prevalences and incidence rates across demographic groups, and infographics to supplement text.⁵⁶

Actionability scores ranged from 0% to 100%, with wide variation in the actionability of material and only half of sites having adequate actionability, according to PEMAT thresholds.⁴⁴ This finding is consistent with poor actionability scores for online materials for people with and after cancer.³¹ While one interpretation of this finding is the necessitation of actionable steps in cancer information, such as checklists for clinical visits, lived experience expert input may also reveal the extent of desire for actionable steps as part of cancer informational needs.

Clinical implications

Creating digital resources to address cancer information needs must involve consultation with First Nations investigators and iterative conversations with First Nations peoples throughout canvasing, design, and implementation. Whilst AI tools can assist by simplifying and automating parts of the creation process, it is important to have consent to share data from First Nations peoples with AI models (eg, for generating summaries) and with clear consideration of the privacy and sovereignty of the data.⁵⁷ AI tools may also assist with translation services, but recognizing and accounting for biases inherent in AI models toward Western ideas ensures cultural appropriateness and the relevance of information generated by AI services.

Strengths and limitations

This review did not capture resources that do not appear via standard Google searches, such as those found on social media or streaming platforms. Exploration of the quality of multimedia resources and non-website platforms, such as short-form videos, would provide insights on availability and understandability across diverse formats and may elucidate a need to expand on accessibility options for cancer information.

Our review was conducted with First Nations peoples as co-investigators and co-authors, supporting the cultural validity of this evaluation and aligning with standards for evaluation of cultural relevance.^33,46 While the cultural relevance tool used has not been formally validated, it was developed by First Nations researchers and administered with a First Nations researcher assessor.^33,46 We note, however, that PEMAT scoring is a subjective judgment and may be impacted by assessors’ experiences with cancer research. Additionally, resources not available online, such as print and audiovisual materials available in public health and clinical settings, are not captured in this environmental scan.

Conclusion

This review identified 12 cancer websites for First Nations people in Australia focused on breast bowel, cervical, and lung cancer information symptoms and treatment pathways. Although the websites scored well for understandability, actionability varied and the overall readability of most materials remains at a high grade level, creating a significant barrier for First Nations peoples with lower health literacy. Cultural relevance and inclusiveness scores varied and only one website met all criteria. More resources need to be developed for First Nations people including resources focusing on less common cancers. To improve cultural relevance and inclusiveness, comprehension and readability, co-designed resources in partnership with First Nations peoples should focus on adopting language that reflects cultural preferences and health literacy levels.

Author contributions

Chloé Maxwell-Smith (Conceptualization, Formal analysis, Funding acquisition, Investigation, Methodology, Project administration, Resources, Supervision, Writing—original draft, Writing—review & editing), Daniela E. Iazzi (Data curation, Formal analysis, Investigation, Methodology, Writing—original draft, Writing—review & editing), Cally Jetta (Conceptualization, Formal analysis, Writing—review & editing), Gail Garvey (Conceptualization, Investigation, Writing—review & editing), Mandy Basson (Conceptualization, Funding acquisition, Methodology, Writing—review & editing), Haryana M. Dhillon (Conceptualization, Investigation, Writing—review & editing), and Georgia K.B. Halkett (Conceptualization, Data curation, Formal analysis, Funding acquisition, Investigation, Methodology, Project administration, Supervision, Writing—review & editing)

Supplementary material

Supplementary material is available at JNCI Cancer Spectrum online.

Funding

D.I. was supported by a Curtin University Faculty of Health Sciences Summer Research Scholarship. This project was funded by The Abbie Basson Sarcoma Foundation Ltd. Sock it to Sarcoma! G.G. was supported by a National Health and Medical Research Investigator Grant (GNT #2034453).

Conflicts of interest

H.M.D, who is a JNCICS Associate Editor and co-author on this article, was not involved in the editorial review or decision to publish the manuscript. Mandy Basson, Executive Director of The Abbie Basson Sarcoma Foundation Ltd. Sock it to Sarcoma! declares she has no conflicts of interest relevant to this publication. Mandy Basson has not received financial support, research funding, consultancy fees, honoraria, or any other benefits from commercial or industry entities that could influence the work presented. No personal, academic, or professional relationships exist that could be perceived to affect the impartiality of this article. The remaining authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Data availability

Data is available from the corresponding author on request.