Palliative care as an area of health care is complicated, both in provision of clinical care and balancing information needs of those who are palliative and their carers, families or friends. The internet has provided a mechanism to make palliative care information freely accessible and ‘on-demand’  available in times of urgency or uncertainty. The complexity of palliative care and situational stresses influence an individual’s ability to easily find, navigate and understand online information. For developers of online palliative care information resources, designing user interfaces with features supporting users to easily use and access information should be the primary focus during the development process.
Usability and the User Experience (UX)
The objective for all developers is to build a resource where end-users can accomplish the objective that the resource was designed for; requiring individuals to engage, learn, remember and navigate the user interface. Usability is the measure of how effective and efficient the interface is as perceived by the user  and can be measured empirically by applying rigorous research methods to evaluate:
- Satisfaction, and
- Identification of interface errors
Usability evaluation methods importantly involve engagement with stakeholders, experts and users to provide feedback to inform iterative improvements to design (content, language, information flow, architecture, navigation and visual representations) aiming to define the resource to the end-user. When applied across the design process, usability research contributes to the understanding of pragmatic aspects of how a user experiences online information and when combined with measures of satisfaction, provides an indication of how meaningful and relevant this experience was to the user.  Multiple usability evaluations undertaken across the development process can provide crucial information improving the final prototype prior to release , and usability can be assessed post-release ensuring the resource is continually meeting the needs of the audience. 
Usability and online palliative care resources
Regardless of whether palliative care online resources are designed for specific groups (such as nurses, carers or for a cohort of patients with a disease) or for a general audience, evaluation of usability is a critical step within the development process limiting influence of developer assumptions of user abilities and design. Characteristics of end-users are a limiting factor on successful use and access within diverse populations, including:
- Socioeconomic status (access to technology and internet)
- Education level
- Attitudes toward technology and experience.
Researchers acknowledge that these characteristics impact on being able to operate within digital environments or level of digital readiness. [6, 7] It is also recognised that they influence confidence in ability to understand content, assess information for trustworthiness or quality to actively inform health decisions. [6, 8] These same characteristics are barriers to access and use for specific groups within our population who would be readily engaging with palliative care online information as carers, patients or family members. These include people aged over 50 , minority or ethnic groups  and people with low levels of formal education and household income. 
Evaluating usability seems fundamental to development, so what’s the problem?
Reports from advocacy and research groups, supported by commentary from usability engineers have found that developers are not applying standards or guidelines during development of their resources effecting both accessibility and usability. Developers struggle to find an evidence-base supporting usability evaluation best practice , have no time nor money and as a result, do not undertake usability evaluation or complete evaluation very poorly. Ad-hoc usability evaluations often involve participation by highly experienced, motivated and technological savvy individuals who do not represent the intended audience actively excluding those who face barriers to access and use.
There is limited research investigating role of usability evaluations on user interface design of palliative care online resources. Researchers are generally unaware of features that could positively enrich the UX and ultimately, to support decision-making process of users who have difficulties accessing, understanding and using online information. Considerations on UX design will be imperative in the future as health systems and policies move toward models of consumer-directed care compelled by the inherent expectations that everyone can successfully use and access online health information.
My program of research
My PhD program of research will investigate the role that structured evaluations of usability and accessibility has on the development of online health information resources, and if this process improves UX of access and value of the resource. It will seek to explore existing evidence base supporting usability evaluation practice, determining if UX of online health toolkits can be improved through application of an evaluation model and investigate how relationships between specific user-characteristics and levels of digital readiness affect access and usability.
If you would like more information about this study, please contact: Amanda.Adams@flinders.edu.au
- World Health Organization (WHO). Classification of digital health interventions v1.0. Geneva: WHO; 2018.
- Nielsen J, Loranger H. Prioritizing web usability. Berkeley, CA, USA: New Riders; 2006.
- Interaction Design Foundation. User Centered Design [Internet]. 2019 [cited 2019 Jul 16].
- Orfanou K, Tselios N, Katsanos C. Perceived Usability Evaluation of Learning Management Systems: Empirical Evaluation of the System Usability Scale. International Review of Research in Open and Distributed Learning. 2015;16(2):227-46.
- Følstad A. Users’ design feedback in usability evaluation: a literature review. Hum-Cent Comput Inf. 2017.7:19.
- Horrigan JB. Digital Readiness Gaps [Web Research Report]. 2016 [updated 2016 Sep 20; cited 2019 Jul16].
- Pew Research Center. Internet/Broadband Factsheet [Internet]. 2019. [updated 2019 Jun 12; cited 2019 Jul 16].
- Choi N. Relationship between health service use and health information technology use among older adults: analysis of the US National Health Interview Survey. J Med Internet Res. 2011 Apr 20;13(2):e33.
- Ethnic Communities Council of Victoria (ECCV). An Investment Not an Expense - Enhancing health literacy in culturally and linguistically diverse communities: ECCV Policy Paper (979kb pdf). Carlton, VIC: ECCV; 2012.
- Marcilly R. Towards Evidence Based Usability in Health Informatics? Stud Health Technol Inform. 2015;218:55-60.
Amanda Adams, PhD Candidate, College of Nursing and Health Sciences, Flinders University
CareSearch maintains a Research Studies Register and invites all Australian researchers in palliative care to provide information on their current research activities for inclusion. Follow this link to complete the Research Studies Proforma to add your study.