Scenarios,personas and user stories: User-centered evidence-based design representations of communicable disease investigations

PurposeDespite years of effort and millions of dollars spent to create unified electronic communicable disease reporting systems, the goal remains elusive. A major barrier has been a lack of understanding by system designers of communicable disease (CD) work and the public health workers who perform this work. This study reports on the application of user-centered design representations, traditionally used for improving interface design, to translate the complex CD work identified through ethnographic studies to guide designers and developers of CD systems. The purpose of this work is to: (1) better understand public health practitioners and their information workflow with respect to CD monitoring and control at a local health agency, and (2) to develop evidence-based design representations that model this CD work to inform the design of future disease surveillance systems.MethodsWe performed extensive onsite semi-structured interviews, targeted work shadowing and a focus group to characterize local health agency CD workflow. Informed by principles of design ethnography and user-centered design we created persona, scenarios and user stories to accurately represent the user to system designers.ResultsWe sought to convey to designers the key findings from ethnographic studies: (1) public health CD work is mobile and episodic, in contrast to current CD reporting systems, which are stationary and fixed, (2) health agency efforts are focused on CD investigation and response rather than reporting and (3) current CD information systems must conform to public health workflow to ensure their usefulness. In an effort to illustrate our findings to designers, we developed three contemporary design-support representations: persona, scenario, and user story.ConclusionsThrough application of user-centered design principles, we were able to create design representations that illustrate complex public health communicable disease workflow and key user characteristics to inform the design of CD information systems for public health.     

Public health education by emergency nurses: A scoping review and narrative synthesis

ObjectiveTo identify the extent, range, and nature of the evidence on public health education provided by emergency nurses.MethodsA scoping review, using the methodological guidance of Joanna Briggs Institute, was conducted to scope and map the literature and research activity. Using predetermined criteria, databases, grey literature, and reference lists were searched for eligible sources. At least two authors reviewed each article. A narrative synthesis methodology was utilised to analyse and report the findings.ResultsThere was significant methodological heterogeneity between sources (n = 6). Three themes were identified: 1) Benefits of the system: An opportunity to inform the public, 2) The barriers: Time pressures and being prepared and 3) The strategies: Plan for structured and created teachable momentsConclusionLimited research is being conducted in this area. Further research is needed to understand emergency nurse’s practice and attitudes towards providing public health messages.Practice implicationsEmergency nurses need to utilise the ‘teachable moment‘ for every emergency admission, providing opportunistic preventative education to improve health outcomes and reduce demand on the healthcare system.     

Dr Google and the Consumer: A Qualitative Study Exploring the Navigational Needs and Online Health Information-Seeking Behaviors of Consumers With Chronic Health Conditions

BackgroundThe abundance of health information available online provides consumers with greater access to information pertinent to the management of health conditions. This is particularly important given an increasing drive for consumer-focused health care models globally, especially in the management of chronic health conditions, and in recognition of challenges faced by lay consumers with finding, understanding, and acting on health information sourced online. There is a paucity of literature exploring the navigational needs of consumers with regards to accessing online health information. Further, existing interventions appear to be didactic in nature, and it is unclear whether such interventions appeal to consumers’ needs.ObjectiveOur goal was to explore the navigational needs of consumers with chronic health conditions in finding online health information within the broader context of consumers’ online health information-seeking behaviors. Potential barriers to online navigation were also identified.MethodsSemistructured interviews were conducted with adult consumers who reported using the Internet for health information and had at least one chronic health condition. Participants were recruited from nine metropolitan community pharmacies within Western Australia, as well as through various media channels. Interviews were audio-recorded, transcribed verbatim, and then imported into QSR NVivo 10. Two established approaches to thematic analysis were adopted. First, a data-driven approach was used to minimize potential bias in analysis and improve construct and criterion validity. A theory-driven approach was subsequently used to confirm themes identified by the former approach and to ensure identified themes were relevant to the objectives. Two levels of analysis were conducted for both data-driven and theory-driven approaches: manifest-level analysis, whereby face-value themes were identified, and latent-level analysis, whereby underlying concepts were identified.ResultsWe conducted 17 interviews, with data saturation achieved by the 14th interview. While we identified a broad range of online health information-seeking behaviors, most related to information discussed during consumer-health professional consultations such as looking for information about medication side effects. The barriers we identified included intrinsic barriers, such as limited eHealth literacy, and extrinsic barriers, such as the inconsistency of information between different online sources. The navigational needs of our participants were extrinsic in nature and included health professionals directing consumers to appropriate online resources and better filtering of online health information. Our participants’ online health information-seeking behaviors, reported barriers, and navigational needs were underpinned by the themes of trust, patient activation, and relevance.ConclusionsThis study suggests that existing interventions aimed to assist consumers with navigating online health information may not be what consumers want or perceive they need. eHealth literacy and patient activation appear to be prevalent concepts in the context of consumers’ online health information-seeking behaviors. Furthermore, the role for health professionals in guiding consumers to quality online health information is highlighted.     

Integrating stakeholder feedback in translational genomics research: an ethnographic analysis of a study protocol’s evolution

PurposeThis study describes challenges faced while incorporating sometimes conflicting stakeholder feedback into study design and development of patient-facing materials for a translational genomics study aiming to reduce health disparities among diverse populations.MethodsWe conducted an ethnographic analysis of study documents including summaries of patient advisory committee meetings and interviews, reflective field notes written by study team members, and correspondence with our institutional review board (IRB). Through this analysis, we identified cross-cutting challenges for incorporating stakeholder feedback into development of our recruitment, risk assessment, and informed consent processes and materials.ResultsOur analysis revealed three key challenges: (1) balancing precision and simplicity in the design of study materials, (2) providing clinical care within the research context, and (3) emphasizing potential study benefits versus risks and limitations.ConclusionsWhile involving patient stakeholders in study design and materials development can increase inclusivity and responsiveness to patient needs, patient feedback may conflict with that of content area experts on the research team and IRBs who are tasked with overseeing the research. Our analysis highlights the need for further empirical research about ethical challenges when incorporating patient feedback into study design, and for dialogue with genomic researchers and IRB representatives about these issues.     

The active role of interpreters in medical discourse – An observational study in emergency medicine

ObjectiveTo study communicative tasks executed and related strategies used by patients, health professionals, and medical interpreters.MethodsEnglish proficient and limited English proficient emergency department patients were observed. The content of patient-hospital staff communication was documented via pen and paper. Key themes and differences across interpreter types were established through qualitative analysis. Themes and differences across interpreter type were vetted and updated through member checking interviews.Results6 English proficient and 9 limited English proficient patients were observed. Key themes in communicative tasks included: establishing, maintaining, updating, and repairing understanding and rapport. All tasks were observed with English proficient and limited English proficient patients. The difference with limited English proficient patients was that medical interpreters played an active role in completing communicative tasks. Telephone-based interpreters faced challenges in facilitating communicative tasks based on thematic comparisons with in-person interpreters, including issues hearing and lost information due to the lack of visual cues.ConclusionsProfessional interpreters play an important role in communication between language discordant patients and health professionals that goes beyond verbatim translation.Practical implicationsTraining for interpreters and health professionals, and the design of tools for facilitating language discordant communication, should consider the role of interpreters beyond verbatim translation.     

Bringing clinical pharmacogenomics information to pharmacists: A qualitative study of information needs and resource requirements

IntroductionAs key experts in supporting medication-decision making, pharmacists are well-positioned to support the incorporation of pharmacogenomics into clinical care. However, there has been little study to date of pharmacists’ information needs regarding pharmacogenomics. Understanding those needs is critical to design information resources that help pharmacists effectively apply pharmacogenomics information.ObjectivesWe sought to understand the pharmacogenomics information needs and resource requirements of pharmacists.MethodsWe conducted qualitative inquiries with 14 pharmacists representing 6 clinical environments, and used the results of those inquiries to develop a model of pharmacists’ pharmacogenomics information needs and resource requirements.ResultsThe inquiries identified 36 pharmacogenomics-specific and pharmacogenomics-related information needs that fit into four information needs themes: background information, patient information, medication information, and guidance information. The results of the inquiries informed a model of pharmacists’ pharmacogenomics resource requirements, with 3 themes: structure of the resource, perceptions of the resource, and perceptions of the information.ConclusionResponses suggest that pharmacists anticipate an imminently growing role for pharmacogenomics in their practice. Participants value information from trust-worthy resources like FDA product labels, but struggle to find relevant information quickly in labels. Specific information needs include clinically relevant guidance about genotypes, phenotypes, and how to care for their patients with known genotypes. Information resources supporting the goal of incorporating complicated genetic information into medication decision-making goals should be well-designed and trustworthy.     

Implementation of an organisation-wide health literacy approach to improve the understandability and actionability of patient information and education materials: A pre-post effectiveness study

ObjectiveLimited examples exist globally of coordinated, organisation-wide health literacy approaches to systematically improve the understandability and actionability of patient health information. Even fewer have been formally evaluated. The aim of this study was to use the Patient Education Materials Assessment Tool (PEMAT) to evaluate the effectiveness of an organisation-wide, evidence-based approach to improve the understandability and actionability of patient information materials in regional health service in New South Wales, Australia.MethodsTwo independent raters (blinded to the document version) evaluated pre- and post-implementation versions of 50 randomly-selected patient information materials using the PEMAT, with differences in understandability and actionability analysed using paired samples tests.ResultsMean (±SD) overall scores for understandability increased significantly by 5% (95% CI 2–8; p = 0.002) up to 77%±10%, and mean actionability (±SD) increased significantly by 4% (95% CI 0–8; p = 0.046) up to 56%±22%.ConclusionThese results demonstrate that organisation-wide approaches with standardised processes for staff to prepare, review and store written patient information and education materials can be successfully implemented to address the impacts and risks of low health literacy.Practice implicationsThe success of this approach provides a framework for other health organisations to work in partnership with patients to make health information more understandable and actionable.     

Barriers and facilitators to the availability of efficacious self-directed digital health tools for adults living with cancer and their caregivers: A systematic literature review and author survey study

ObjectiveThis study aimed to examine barriers and facilitators to the dissemination of efficacious self-directed digital health tools for adults affected by cancer, and quantify funding used to develop and evaluate these digital health tools.MethodsWe conducted: (1) a systematic literature review to identify efficacious self-directed digital health tools for adults affected by cancer, published between 2009 and 2019 and (2) an author survey to identify barriers and facilitators to dissemination of those tools, grant funding and the user centredness of their design (UCD) process.ResultsOf 1314 screened articles, 29 articles describing 26 tools met the inclusion criteria. From 26 surveys sent, 12 were completed, 6 of which described disseminated tools. Whilst researchers’ motivation and infrastructure support facilitate tool dissemination, limited funds, lack of infrastructure and limited research timelines are the most common barriers. A median of AUD$250,000 was spent on tools not disseminated to end-users.ConclusionAlthough incorporating UCD processes in the development of digital health tools is important, it is imperative to integrate implementation processes into the planning stages of tool development to ensure dissemination.Practice ImplicationsResearchers, academic institutions, funding agencies and government and non-government organisations all have roles to play to support long-term implementation.     

Predicting treatment process steps from events

MotivationThe primary economy-driven documentation of patient-specific information in clinical information systems leads to drawbacks in the use of these systems in daily clinical routine. Missing meta-data regarding underlying clinical workflows within the stored information is crucial for intelligent support systems. Unfortunately, there is still a lack of primary clinical needs-driven electronic patient documentation. Hence, physicians and surgeons must search hundreds of documents to find necessary patient data rather than accessing relevant information directly from the current process step. In this work, a completely new approach has been developed to enrich the existing information in clinical information systems with additional meta-data, such as the actual treatment phase from which the information entity originates.MethodsStochastic models based on Hidden Markov Models (HMMs) are used to create a mathematical representation of the underlying clinical workflow. These models are created from real-world anonymized patient data and are tailored to therapy processes for patients with head and neck cancer. Additionally, two methodologies to extend the models to improve the workflow recognition rates are presented in this work.ResultsA leave-one-out cross validation study was performed and achieved promising recognition rates of up to 90% with a standard deviation of 6.4%.ConclusionsThe method presented in this paper demonstrates the feasibility of predicting clinical workflow steps from patient-specific information as the basis for clinical workflow support, as well as for the analysis and improvement of clinical pathways.     

Collective-Intelligence Recommender Systems: Advancing Computer Tailoring for Health Behavior Change Into the 21st Century

BackgroundWhat is the next frontier for computer-tailored health communication (CTHC) research? In current CTHC systems, study designers who have expertise in behavioral theory and mapping theory into CTHC systems select the variables and develop the rules that specify how the content should be tailored, based on their knowledge of the targeted population, the literature, and health behavior theories. In collective-intelligence recommender systems (hereafter recommender systems) used by Web 2.0 companies (eg, Netflix and Amazon), machine learning algorithms combine user profiles and continuous feedback ratings of content (from themselves and other users) to empirically tailor content. Augmenting current theory-based CTHC with empirical recommender systems could be evaluated as the next frontier for CTHC.ObjectiveThe objective of our study was to uncover barriers and challenges to using recommender systems in health promotion.MethodsWe conducted a focused literature review, interviewed subject experts (n=8), and synthesized the results.ResultsWe describe (1) limitations of current CTHC systems, (2) advantages of incorporating recommender systems to move CTHC forward, and (3) challenges to incorporating recommender systems into CTHC. Based on the evidence presented, we propose a future research agenda for CTHC systems.ConclusionsWe promote discussion of ways to move CTHC into the 21st century by incorporation of recommender systems.     

Using crowdsourcing technology for testing multilingual public health promotion materials

Background

Effective communication of public health messages is a key strategy for health promotion by public health agencies. Creating effective health promotion materials requires careful message design and feedback from representatives of target populations. This is particularly true when the target audiences are hard to reach as limited English proficiency groups. Traditional methods of soliciting feedback—such as focus groups and convenience sample interviews—are expensive and time consuming. As a result, adequate feedback from target populations is often insufficient due to the time and resource constraints characteristic to public health.

Objective

To describe a pilot study investigating the use of crowdsourcing technology as a method to gather rapid and relevant feedback on the design of health promotion messages for oral health. Our goal was to better describe the demographics of participants responding to a crowdsourcing survey and to test whether crowdsourcing could be used to gather feedback from English-speaking and Spanish-speaking participants in a short period of time and at relatively low costs.

Methods

We developed health promotion materials on pediatric dental health issues in four different formats and in two languages (English and Spanish). We then designed an online survey to elicit feedback on format preferences and made it available in both languages via the Amazon Mechanical Turk crowdsourcing platform.

Results

We surveyed 236 native English-speaking and 163 native Spanish-speaking participants in less than 12 days, at a cost of US $374. Overall, Spanish-speaking participants originated from a wider distribution of countries than the overall Latino population in the United States. Most participants were in the 18- to 29-year age range and had some college or graduate education. Participants provided valuable input for the health promotion material design.

Conclusions

Our results indicate that crowdsourcing can be an effective method for recruiting and gaining feedback from English-speaking and Spanish-speaking people. Compared with traditional methods, crowdsourcing has the potential to reach more diverse populations than convenience sampling, while substantially reducing the time and cost of gathering participant feedback. More widespread adoption of this method could streamline the development of effective health promotion materials in multiple languages.     

Social Media and Mobile Apps for Health Promotion in Australian Indigenous Populations: Scoping Review

BackgroundHealth promotion organizations are increasingly embracing social media technologies to engage end users in a more interactive way and to widely disseminate their messages with the aim of improving health outcomes. However, such technologies are still in their early stages of development and, thus, evidence of their efficacy is limited.ObjectiveThe study aimed to provide a current overview of the evidence surrounding consumer-use social media and mobile software apps for health promotion interventions, with a particular focus on the Australian context and on health promotion targeted toward an Indigenous audience. Specifically, our research questions were: (1) What is the peer-reviewed evidence of benefit for social media and mobile technologies used in health promotion, intervention, self-management, and health service delivery, with regard to smoking cessation, sexual health, and otitis media? and (2) What social media and mobile software have been used in Indigenous-focused health promotion interventions in Australia with respect to smoking cessation, sexual health, or otitis media, and what is the evidence of their effectiveness and benefit?MethodsWe conducted a scoping study of peer-reviewed evidence for the effectiveness of social media and mobile technologies in health promotion (globally) with respect to smoking cessation, sexual health, and otitis media. A scoping review was also conducted for Australian uses of social media to reach Indigenous Australians and mobile apps produced by Australian health bodies, again with respect to these three areas.ResultsThe review identified 17 intervention studies and seven systematic reviews that met inclusion criteria, which showed limited evidence of benefit from these interventions. We also found five Australian projects with significant social media health components targeting the Indigenous Australian population for health promotion purposes, and four mobile software apps that met inclusion criteria. No evidence of benefit was found for these projects.ConclusionsAlthough social media technologies have the unique capacity to reach Indigenous Australians as well as other underserved populations because of their wide and instant disseminability, evidence of their capacity to do so is limited. Current interventions are neither evidence-based nor widely adopted. Health promotion organizations need to gain a more thorough understanding of their technologies, who engages with them, why they engage with them, and how, in order to be able to create successful social media projects.     

Health literacy in the eHealth era: A systematic review of the literature

ObjectivesThis study aimed to identify studies on online health service use by people with limited health literacy, as the findings could provide insights into how health literacy has been, and should be, addressed in the eHealth era.MethodsTo identify the relevant literature published since 2010, we performed four rounds of selection—database selection, keyword search, screening of the titles and abstracts, and screening of full texts. This process produced a final of 74 publications.ResultsThe themes addressed in the 74 publications fell into five categories: evaluation of health-related content, development and evaluation of eHealth services, development and evaluation of health literacy measurement tools, interventions to improve health literacy, and online health information seeking behavior.ConclusionBarriers to access to and use of online health information can result from the readability of content and poor usability of eHealth services. We need new health literacy screening tools to identify skills for adequate use of eHealth services. Mobile apps hold great potential for eHealth and mHealth services tailored to people with low health literacy.Practice implicationsEfforts should be made to make eHealth services easily accessible to low-literacy individuals and to enhance individual health literacy through educational programs.     

Exploring the scope of community-based rehabilitation in ensuring the holistic development of differently-abled people

BackgroundGlobally, it has been estimated that almost 15% of world''s population live with some form of disability, of which the majority are from developing nations.ObjectivesTo explore the role of community-based rehabilitation (CBR) in the health sector, identify the prevalent challenges, and to suggest measures to facilitate its smooth implementation in community.MethodsAn extensive search of all materials related to the topic was made using library sources including Pubmed, Medline and World Health Organization. Keywords used in the search included community, community-based rehabilitation, disabled, and public health.ResultsThe notion of community-based rehabilitation (CBR) emerged in 1978 with an aim to improve the accessibility of disabled people to rehabilitation services, especially in developing countries, by ensuring optimal use of locally available resources. CBR programs support people with disabilities by providing health services at their doorsteps, and thus estalish a strong linkage between people with disabilities and the health-care system.ConclusionCBR encompasses a set of interventions that are implemented for a diverse and complex group of disabled people, and thus necessitates careful planning and systematic execution for ensuring welfare of these vulnerable people.