Assessing the value of online palliative care information
Seth Nicholls A * and Jennifer Tieman AA
Abstract
This study aimed to assess the value of an online palliative care resource (CareSearch) in providing evidence-based information to clinicians and consumers; and online palliative care information more broadly from the perspective of key stakeholder organisations.
Nine semi-structured interviews with representatives from key stakeholder organisations were undertaken. A pragmatic, qualitative analytical approach was used to identify key findings.
Seven key findings were identified. These emphasised the criticality of CareSearch, the importance of access to high-quality online palliative care information, the need for a robust palliative care evidence base, challenges to the delivery of palliative care, the need to improve visibility, the need to improve accessibility, and the importance of co-design and lived experience.
CareSearch and online palliative care information have a critical role to play in responding to the challenges facing the sector. Maximising the value of such information will require improvements in access to evidence, visibility, usability, and the development of resources tailored to diverse users.
Keywords: CareSearch, clinical and consumer decision-making, end of life, evidence-based information, online health information, palliative care.
Introduction
As the Australian population ages and the demand for palliative care increases, so does the need for access to high-quality online palliative care and end-of-life evidence and information. In a knowledge-intensive industry such as health care, the availability of evidence-based information is crucial for clinical and consumer decision-making. Research has shown that online information can influence clinician and consumer decisions on health-related matters1,2 and the World Health Organization has identified ‘on-demand communication’ services that provide ‘clear, actionable, and thorough health information accessible via computer or mobile device’ as a critical source of support for individuals making health-related decisions.3 However, evidence pertaining to the impact of online health information is limited, with often only generic reporting on site visits and views. Metric usage data do not necessarily indicate the efficacy of online information in enabling or facilitating the efficacy of web-based resources in knowledge retention or use, or assess whether the outcomes that are ultimately desired (such as improvement in patient health) are being achieved.4–7
The importance of palliative care for people at the end of life is of specific interest in policy discussions. The Lancet’s Commission on the Value of Death8 has highlighted the need to rebalance death, dying and grieving across all systems, and challenges global bodies and governments to address this need. In Australia, the National Palliative Care Program9 aims to meet diverse needs through various projects and initiatives directed to issues such as family carers (CareSearch, CarerHelp and caring@home), workforce training and development (End of Life Essentials (EOLE), Program of Experience in the Palliative Approach (PEPA), Palliative Care Curriculum for Undergraduates (PCC4U)), CareSearch, paediatric palliative care (Quality of Care Collaborative Australia (QuoCCA) and the Paediatric Palliative Care website), underserved populations (Gwandalan Palliative Care, LGBTIQ+ Health Australia) and aged care (End of Life Directions for Aged Care (ELDAC), Palliative Aged Care Outcomes Program (PACOP) and palliAGED). Other national initiatives such as the Greater Choice at Home Palliative Care Program and the Comprehensive Palliative Care in Aged Care Measure seek to extend policy through primary health networks and State–Federal projects, respectively.
Given the demographic, workforce, policy, fiscal, and other challenges to the delivery of palliative care, a better understanding of how clinicians and consumers interact with online information is critical. This is because online health information has the potential to act as a ‘force multiplier’10 of interventions that seek to respond to these challenges. This article outlines key findings from a series of interviews designed to assess the value of the CareSearch website, as well as the value of online palliative care information more broadly. In collaboration with partner organisations (including Flinders University) and through an extensive dissemination network, CareSearch provides trustworthy, evidence-informed information on palliative care to health professionals and the general community (caresearch.com.au). In accordance with the Global Evaluation Initiative’s (BetterEvaluation) definition, value in this context is pragmatically defined as the ‘merit, worth or significance’ of a given intervention.11
By exploring stakeholders’ views on the utility of CareSearch (which receives more than 250,000 site visits annually, J Tieman, R Damarell, unpubl. data, 2024) and the value of online palliative care information, critical insights needed to improve healthcare information websites such as CareSearch were obtained. Ultimately, these insights have the potential to improve palliative and end-of-life care across the life course (from geriatric to paediatric) by contributing to the development of palliative and other online healthcare resources that enable consumers and clinicians to more effectively utilise information provided for both decision-making and practice.
Methods
Aim
This research aimed to assess the value of an online palliative care knowledge resource (CareSearch) and online palliative care information more broadly from the perspective of key stakeholder organisations (Table 1).
| Stakeholder organisations | |
|---|---|
| Adelaide Primary Health Network | |
| Australia New Zealand Society of Palliative Medicine | |
| Australian Centre for Grief and Bereavement | |
| End-of-Life Essentials | |
| LGBTIQ+ Health Australia | |
| Older Persons Advocacy Network | |
| Palliative Care Australia | |
| Palliative Care Nurses Australia | |
| Quality of Care Collaborative Australia (QuoCCA) |
Participants
Nine participants representing senior leadership, research, policy, advocacy, and service delivery roles from key national palliative care organisations and CareSearch partner projects were interviewed. Participants represented both consumers and clinicians and were identified based on their expertise in palliative/end-of-life care and knowledge of CareSearch. Invited to take part via email. those who were interested were provided with a Participant Information and Consent Form (Supplementary material File S1) detailing the study aims and risks of participating. All of those who participated provided written and informed consent.
Data collection
Data were collected between December 2022 and February 2023. Semi-structured interviews lasting approximately 1 h were conducted by one of the authors (SN) via MS Teams. To assess the value of CareSearch and online palliative care information more broadly, participants were asked about the sources of evidence used to guide their constituencies, how their organisations find and apply palliative care evidence, and the types of evidence they consider most valuable. They were also invited to discuss the importance of open access online information, barriers to accessing and using palliative care evidence, and specific challenges faced by health professionals and the community. Additionally, participants were asked about CareSearch’s role in the palliative care knowledge cycle and how it could better support organisations in translating evidence into practice, and were also given the opportunity to raise other relevant issues regarding the role and value of palliative care evidence. For context, participants were also asked to identify the main issues confronting palliative care in Australia over the next decade (Supplementary material File S2: Interview Guide).
Analysis
A pragmatic, qualitative analytical approach broadly consistent with inductive content analysis was used.12 Interviews were transcribed and reviewed by the authors to identify potentially significant findings. These findings are summarised in Table 2, which provides representative quotes from the interviews that reflect the issues and considerations described as influencing palliative care within Australia. Iterative coding (SN) of the dataset led to the creation of a reflective thematic map (SN) to help the authors better understand the relationship between findings emerging across the interviews and synthesise the data in a way that supported conceptual clarity (Fig. 1). The analytical approach was, however, also deductive to the extent that it was guided, in part, by a desire to help the CareSearch National Advisory Group (NAG) in their strategic direction of CareSearch. The NAG membership provides a mechanism by which the interests and expertise of constituencies associated with palliative care across health care, aged care and the community are represented and reflected in the project direction and developments. The map was reviewed by the authors to ensure fidelity to the original data, and a suite of key findings distilled that supported authentic representation of the interviews and ‘told the story’ of the data as a whole. Findings were incorporated into a report to the NAG and verbally presented to this group for review and validation against the project’s context and purposes, which could in turn inform discussions about future directions and/or potential activities.
| Finding | Illustrative quotation/s | |
|---|---|---|
| Demographic, workforce, policy and cultural challenges | Australia has a rapidly ageing population…the population of people requiring palliative care is expected to double from 100,000 to 200,000 by the year 2050 (SI02). | |
| Clearly, demand for palliative care services is already exceeding service and supply. That gap between demand and supply of services is going to continue to continue to grow without ongoing investment in palliative care services (SI01). | ||
| [Australia’s current healthcare workforce] has been depleted through people exiting out of the health system. Nurses, doctors, allied health professionals, volunteers, they’re all part of the multidisciplinary team approach and we know that there’s been an exit…the remaining staff cohort is exhausted and is insufficient to deliver the level of palliative care that’s required (SI02). | ||
| We know there’s going to be a major nursing workforce shortage, and there’s within specialist palliative care a real concern that many more senior nurses within that sector are due for retirement within the next number of years (SI04). | ||
| We need to think about how to…embed support [training] for clinicians that are not working in specialist palliative care roles, but working with people with palliative care needs [and] don’t feel skilled to provide that care (SI04). | ||
| …we don’t have uniformity in Australia between each state and territory and the Commonwealth government about the split of funding [for health care]…we…need to revisit the whole COAG [sic] arrangement and look at what the split is between Commonwealth and state funding and what that national coordination looks like (SI02). | ||
| It’s still a fairly taboo subject in our society, people often don’t feel comfortable talking about death and dying (SI02). | ||
| The criticality of high-quality information and evidence | Policymakers don’t have any key clinical indicators at the hospital level that speak to quality of care for people with palliative care needs (SI04). | |
| There’s [often] a huge gulf…in terms of what the evidence suggests and what current practice [is] (SI08). | ||
| Maximisation of access | There’s a need for resources that are accessible for the large proportion of the care workforce that comes from a non-English speaking background. I mean, there’s a minimum level of English proficiency that’s expected, but it does mean that plain language resources are really important (SI05). | |
| I think it’s incredibly important that people access information from a respected source like CareSearch or Palliative Care Australia, but they need to understand what it is they’re searching for… people aren’t going to necessarily go searching for palliative care, but they’ll go searching for end of life (SI02). | ||
| We use CareSearch…[partly because] I don’t have access to any of the big journal databases (SI07). | ||
| CareSearch: a critically important source of open access online information | CareSearch has great reach…[and] I can’t think of another show in town that has that kind of rigour. And as I said, the power of CareSearch is in the way it curates information. This sets it above and beyond anybody else (SI08). | |
| CareSearch…[is] a library of information for organisations, and potentially for consumers…that is peer reviewed, evidence-based [and] been screened and reviewed. And so the information’s legitimate (SI02). | ||
| We use CareSearch [to find palliative care evidence]…the minute I became Chief Executive and was looking for resources and new publications…[I went to] to CareSearch (SI07). | ||
| I generally refer people to CareSearch and to ELDAC, and to CarerHelp too…because I have found they provide very comprehensive access to a whole range of relevant resources in the one place (SI05). | ||
| Diverse users and vulnerable populations | There’s an enormous amount of work to be done [to accommodate] cultural diversity and…diversity in its broadest sense. I’d like to see greater efforts around accommodation of clients from LGBTIQ+ backgrounds and also…Aboriginal Torres Strait Islander individuals (SI08). | |
| [We need] to acknowledge that paediatrics is different to…adult palliative care (SI09). | ||
| Co-design, case studies and lived experience | Nowadays when you go to talk to a politician, it can’t just be about the evidence, it has to be the case studies and it has to be about the statistics in terms of the numbers (SI02). | |
| [policy makers and others] need personal story as well…they need the lived experience [of Australians]…they need the voice of the people to go up to the top (SI03). | ||
| Visibility | …what I think is happening is that there are some emerging programs or organisations coming forward that have been consumer or grassroots developed, because either they don’t know about CareSearch or they don’t understand how to access the information (SI02). |
ELDAC, End of Life Directions for Aged Care; SI, study interview.
This pragmatic blend of inductive and deductive analysis explains the relationship between the five themes initially identified (Fig. 1) and the seven key findings comprising the focus of this paper. While the reflective map provided a thematically organised bird’s eye view of the data and diagrammatically presents findings disproportionately emphasised by participants across the interviews (highlighted in red), the findings discussed below represent a synthesis of that which emerged (inductively) from the data and were identified (deductively) on the basis of their relevance to the NAG’s task of providing strategic direction to CareSearch.
Results
Participants believed that CareSearch and high-quality online information about palliative care and end-of-life issues more broadly were critical in view of the issues confronting palliative care in Australia over the next decade. They also emphasised the importance of visibility, usability and accessibility, and emphasised the need to tailor information to a diverse range of users. Seven key findings were identified. These findings were acknowledged and endorsed as key considerations for CareSearch by the NAG. Additional illustrative quotations are provided in Table 2. To preserve participant anonymity, quotations have been attributed to the relevant study interview code (SI).
Demographic, workforce, policy and cultural challenges
Most participants identified Australia’s ageing population and the consequent increase in demand for palliative care as one of the most important issues facing the sector. Participants also identified a depleted, insufficient, and inadequately trained healthcare workforce as a pressing issue. Specifically, several participants suggested that there was a need to ensure that non-specialist clinicians and others working with people with palliative care needs had the knowledge and skills required to provide adequate care.
Health and aged care funding were also identified as key issues confronting the sector. As one participant noted, ‘Funding’s at the heart of…[the problem of staffing] within aged care’ and that in respect to palliative care ‘it’s just a reality that there’s not enough resources to go around’ (SI05). Several participants viewed state and territory funding arrangements and a lack of coordination across the health and aged care systems as challenges to palliative care delivery. The fragmented nature of Australia’s health and hospital network and the impact of voluntary assisted dying (VAD) legislation were also believed to be key challenges. A broader cultural discomfort with death and dying, lack of community understanding about palliative care, and difficulties conducting palliative care research were also viewed as impediments to high-quality care.
The criticality of high-quality information and evidence
Overall, it was clear that participants believed that the availability of high-quality information and evidence about palliative care and end-of-life issues was critical for those at the end of life, clinicians, carers, and the community. In particular, the need for open access online information about palliative care and end-of-life issues was emphasised. As one participant remarked, the provision of such information online is ‘critically important for lots of reasons’ (SI08). Other participants described the provision of such information as ‘absolutely integral’ (SI02) and ‘terrifically important’ (SI05), while another suggested that the availability of such information was ‘increasingly important’ in light of the growing dependence on online information (SI06). The need to make high-quality research evidence about palliative and end-of-life care available to policymakers and clinicians (to ensure policy and care were consistent with best practice) was also highlighted.
Maximisation of access
In addition to the importance of making high-quality online information and evidence about palliative care and end-of-life issues available, several participants also stressed the need to ensure that such information was accessible. In practice, this meant going beyond open access and ensuring that information is presented in ‘plain English’ for carers and others. The need for terminological clarity when marketing online palliative care resources was also highlighted, as was the need to ensure that evidence-based resources were able to be accessed by clinicians, policymakers, and others working with people at end of life. One interviewee noted, for example, the (potentially prohibitive) cost of accessing evidence-based resources via university databases, while another suggested that one of the reasons that CareSearch (as an open access resource) was so valuable was because they did not have access to large databases.
CareSearch: a critically important source of open access online information
Interviewees as a group viewed CareSearch as a critically important source of authoritative, up-to-date, open access online information about palliative care and end-of-life issues. For many of those interviewed, the value of CareSearch lay in the fact that it provides a unique source of carefully curated, synthesised, relevant palliative care and end-of-life resources based on peer-reviewed, evidence-based research.
It was evident, too, that interviewees viewed CareSearch as a trustworthy, legitimate source of information and evidence on palliative care and end-of-life issues that they could both use themselves and refer others to with confidence.
Diverse users and vulnerable populations
Many of those interviewed believed that it was necessary to tailor online palliative care information to the needs of a diverse range of users, including vulnerable populations and people with complex care needs. These included:
people in rural and regional areas
culturally and linguistically diverse populations
Aboriginal and Torres Strait Islander peoples
LGBTIQ+ communities
people with disabilities
children
Other participants remarked that ‘people with disabilities are a dramatically underserved population in relation to their palliative care needs’ (SI02) and that there were ‘significant issues with geographic access to quality palliative care’ (SI07). The need for tailored information at different stages of life was also acknowledged.
Co-design, case studies and lived experience
Several interviewees spoke of the importance of more co-designed research with older people and their families and carers in the palliative care context. As one participant suggested, ‘what we’d like to see more of…[is] co-designed research with older people and their families and carers, certainly in the palliative care context’ (SI05). Such comments appeared to be driven by a perceived need to ‘listen…[more closely] to the patient groups and the consumers about what they need’ (SI02) and draw on ‘the voice of experience’ regarding what works in palliative and end-of-life care (SI07).
The need to further utilise case studies and draw on the lived experience of those at the end of life, their family members, carers, and others was also emphasised, with some participants suggesting that case studies and personal stories were necessary to persuade policymakers and others of the need for palliative care funding.
Visibility
In addition to availability and access, ensuring that online palliative care resources were visible (i.e. easy to find) to people at end of life, carers and practitioners was stressed. While the visibility of such resources was viewed as important from the perspective of time-poor practitioners seeking ready access to high-quality information to inform practice, visibility was also viewed as a means of avoiding duplication by those who were not aware that such resources existed.
Discussion
The findings have implications for the strategic direction of CareSearch and the provision of online palliative care and end-of-life evidence and information more generally. With respect to CareSearch, the findings both complement the project team’s experiential knowledge of online information provision and support the NAG’s ability to guide the project. By identifying critical issues from the perspective of key stakeholders, the findings equip both groups with a higher resolution understanding of the cultural, demographic, institutional and technological eco-system from within which CareSearch is delivering information. This augmented knowledge of the complex, rapidly changing, resource-constrained (real world) environment in which it is operating makes a valuable contribution to the evidence base that CareSearch needs, in order to continue providing critical information on end-of-life care, in a way that supports and informs practice and decision-making and meets the needs of its intended users.
The findings also suggest a clear need for ongoing investment in the kinds of digital resources of which CareSearch is an exemplar. Interviewees were emphatic, for example, that the provision of high-quality, open access online information about palliative care and end-of-life issues was ‘critically important’, particularly in view of the ageing of Australia’s population, consequent future growth in demand for palliative care services, and ongoing health and aged care workforce shortages. It was also clear that interviewees viewed CareSearch as a unique source of carefully curated open access palliative care and end-of-life resources for people at the end of life, their families, carers, clinicians and others. As one interviewee remarked, they couldn’t think of ‘another show in town’ that has CareSearch's rigour.
Key findings from the study also have relevance for CareSearch as a (discrete) digital resource, the provision of online palliative care information more broadly, and the design and development of healthcare information websites in general. For example, interviewees’ comments regarding the need to maximise access to trustworthy information and evidence on palliative care, improve the visibility, timeliness and usability of the information and evidence available, and market palliative care information effectively to diverse users all suggest avenues through which the delivery of palliative care and end-of-life information could be enhanced. These findings can also help to inform best practice and impact frameworks for the development and evaluation of healthcare information websites, both of which have the potential to enhance the efficacy of such resources by providing a more rigorous, evidence-based approach to the design, development and evaluation of such sites.7
Limitations
This study involved a small and selected set of interviewees. While the selection was intentional to provide different perspectives on the role of CareSearch, the nature of responses may not reflect all of the issues of importance in the sector. Interviewees may also have felt circumspect in their comments given any relationship with CareSearch, and comments may have been influenced by the COVID-19 pandemic.
Data availability
The interview data used and/or analysed in the current study can be made available from the corresponding author on reasonable request.
Declaration of funding
CareSearch is funded by the Australian Government Department of Health and Aged Care.
Acknowledgements
The authors thank Dr Katrina Erny-Albrecht for her contribution to the early conception and design of this paper, and Dr Raechel Damarell for her contribution to the article’s overarching narrative framework.
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