Why online palliative care information matters now more than ever

An article written by Dr. Seth Nicholls, Research Fellow, CareSearch, Flinders University and Professor Jennifer Tieman, Director, CareSearch, Flinders University

The ability to access high-quality information on palliative and end-of-life care comprises a cornerstone of Australia’s National Palliative Care Strategy. [1] This is because access to such information provides people affected by life-limiting illness and those they rely on with the foundation needed to make informed decisions about the care they receive. Since 2008, CareSearch has played a pivotal role in supporting this objective, by providing access to trustworthy, evidence-based palliative care information and resources. However, while CareSearch comprises a critical and unique component of Australia’s palliative care knowledge infrastructure, a digital landscape increasingly pervaded by AI-driven content, misinformation and malicious actors means that over the next decade, ensuring access to trustworthy information will be more important – and challenging – than ever before.

This context presents CareSearch with both challenges and opportunities. On the one hand, an increasingly complex and rapidly evolving digital environment makes it harder for users – particularly those with low digital literacy – to distinguish high-quality, evidence-based information from poor-quality, misleading, or AI-generated content. On the other hand, it presents CareSearch with an opportunity to go beyond information provision, by developing and delivering resources that help consumers, carers, clinicians, and others confidently navigate the new digital landscape and further realise the benefits of trustworthy palliative care information.

To better understand how clinicians, consumers and others are engaging with CareSearch and online palliative care information more broadly and ensure that CareSearch continues to meet the evolving needs of its users, we surveyed 133 people between June-August 2025. Our online survey examined:

• How health professionals and others value and use trusted, evidence-based palliative care knowledge and resources (including CareSearch)
• Find and share palliative care information using technology
• Assess the trustworthiness of online information
• Clinician and consumer views on artificial intelligence
• Opportunities to improve access to online palliative care and end-of-life information.

One of the most striking findings of the survey was the importance that participants placed on the availability of evidence-based palliative care and end-of-life information. Of the 98 people who responded to the question ‘How important is it that evidence-based information exists on palliative care and end-of-life for health professionals and community members?’, 100% reported that the availability of such information was either ‘important’ or ‘very important’ to them. Striking, too, was that of the 54 participants who had visited CareSearch, 87% reported that they had found the information they were looking for, with 94% indicating that finding this information was either ‘important’ or ‘very important’ to them (see table below).

Importantly, the survey also yielded valuable insights into how health professionals and the community engage with and use information and resources provided by CareSearch. Specifically, findings related to the following provide CareSearch with insights that can help to optimise the real-world use – and impact – of its resources going forward:

• What users of CareSearch primarily search for (e.g. information on symptom management, Advanced Care Planning resources)
• The tasks that information provided by CareSearch is used to support (e.g. patient care, teaching, and referral)
• How CareSearch information and evidence are actually used by clinicians and consumers (e.g. clinical and other decision-making)
   

In addition to the above, findings from the survey suggest that technology has a central and ongoing role to play in the dissemination and utilisation of much-needed information on palliative care. When asked how they used technology to find or share health information, 98% (of 103 respondents) indicated that they ‘looked for health information online’ either ‘frequently’ or ‘sometimes’, with over 90% (of more than 100 respondents) also suggesting that they used smartphones and computers daily. Given the extent to which those who were surveyed reported using technology such as computers, smartphones and the internet to find or share health information, these findings illustrate the extent to which technology is likely to be a primary conduit for healthcare knowledge dissemination going forward.

As we have previously argued, online health information has the potential to act as a much-needed force multiplier in response to an ageing population, the increasingly pervasive and widespread use of technology, and the need for clear, trustworthy information in a complex and uncertain online environment. [2,3] The survey findings discussed therefore offer a timely and useful snapshot of digital technology’s impact on the palliative care landscape, underscoring the need for continued investment in trustworthy, accessible, and user-centred resources. By listening to the voices of those who receive and deliver palliative care, CareSearch can help to ensure that digital innovation serves the palliative and end-of-life needs of all Australians in the coming decade.

Reference

1. Australian Government Department of Health. National Palliative Care Strategy 2018. Canberra: Commonwealth of Australia; 2018.
2. Nicholls S, Tieman J. Assessing the value of online palliative care information. Aust Health Rev. 2025; 49; AH2503.
3. Tieman J, Nicholls S. Enhancing the efficacy of healthcare information websites: a case for the development of a best practice framework. BMJ Open 2024;14:e088789.

Authors

Dr. Seth Nicholls

Research Fellow, CareSearch

Flinders University

Professor Jennifer Tieman

Matthew Flinders Professor

Director, CareSearch and Research Centre for Palliative Care, Death and Dying (RePaDD)