Where do you go for health information? Do you ask family and friends, or are you a member of an organisation that filters information to keep you informed? Do you travel a well-worn path returning to trusted sources or do you roam the sometimes-untamed offerings of the internet?
With ten years of experience in providing evidence-based online information on palliative care, CareSearch is aware that the way people access information varies and that making information available is often of itself not enough. We also know that whatever the path, many people are overwhelmed and distracted by the volume of information available.
To better understand the palliative care information needs of people and organisations, and to directly connect them with the most useful resources, the CareSearch Engagement Project was launched in 2018. The project aim was to develop and test a structured approach to uncovering sector specific information channels and to use this knowledge to deliver and disseminate the most relevant and needed palliative care information.
The uptake of knowledge is helped by tailoring information to the audience and considering the context or setting in which it is being accessed and used. [1, 2] By taking information to where it is needed, we hoped to increase the reach and awareness of the CareSearch and palliAGED websites and resources and in so doing improve access to evidence-based support in palliative care. Given the diversity across Australia’s population and care system, developing an efficient way to reach this level of understanding was regarded as important. Three very different groups were initially targeted by the project: aged care, allied health, and patients, carers and families.
Context in health care is complex and influenced by many factors including individuals, organisational arrangements, infrastructure and networks.  So we began the project by examining the literature to gain insights into the contexts within which each of the groups operate and therefore how we might work together. We then called for expressions of interest and received responses from more than 120 individuals from over 90 separate organisations. Clearly, we were not alone in thinking that access to information on palliative care is important. Representatives from each group then joined us for workshops where we discussed the idea of ‘sector’ information channels and how and what information on palliative care might be delivered via existing channels. Each group also helped to refine our understanding of the sector context. Armed with new insights and improved understanding, we then devised action plans to test our new knowledge.
Working with the sector and for the sector, in 2019 we undertook activities with each of the target groups. Hopefully, you will have come across some of our many articles which are listed on the Engagement Project webpage. Perhaps you have made use of the navigation aids such as the ones for carers or allied health added to the CareSearch website on the basis of feedback from the groups. After six months of action we took stock of what had been done and what the impact was on uptake of CareSearch/palliAGED resources. Not surprisingly we found between sector variation, but also common points of intersect including the topics of interest. Understanding what palliative care is and isn’t was high on most lists. When outcomes were presented at a second workshop the sustained level of enthusiasm for the project was apparent. Although palliative care is relevant across the life course it appears that population ageing is driving increased interest and demand for information to support decision-making and care at the end of life.
As we complete our analysis of the Engagement Project one finding common across the sectors has been the importance of trust, both in the provider of information and the information itself. The rigorous quality processes applied by CareSearch in providing evidence-based information are key elements of gaining and maintaining this trust. We plan to publish the findings of the CareSearch Engagement Project in 2020. To keep updated with reports and articles related to this project please visit the Engagement Project page.
- Davies HTO, Powell AE, Nutley SM. Mobilising knowledge to improve UK health care: learning from other countries and other sectors – a multimethod mapping study. Southampton (UK): NIHR Journals Library; 2015 Jun. (Health Services and Delivery Research, No. 3.27.)
- Squires JE, Graham I, Bashir K, Nadalin-Penno L, Lavis J, Francis J, et al. Understanding context: A concept analysis. J Adv Nurs. 2019 Dec;75(12):3448-3470. doi: 10.1111/jan.14165. Epub 2019 Sep 4.
Katrina Erny-Albrecht, Senior Research Fellow, CareSearch, Flinders University