Designing and evaluating a web-based selfmanagement site for patients with type 2 diabetes - systematic website development and study protocol

ABSTRACT: BACKGROUND: Given that patients provide the majority of their own diabetes care, patient self-management training has increasingly become recognized as an important strategy with which to improve quality of care. However, participation in self management programs is low. In addition, the efficacy of current behavioural interventions wanes over time, reducing the impact of self-management interventions on patient health. Web-based interventions have the potential to bridge the gaps in diabetes care and self-management. OBJECTIVE: To improve self-efficacy, quality of life, self-care, blood pressure, cholesterol and glycemic control and promote exercise in people with type 2 diabetes through the rigorous development and use of a web-based patient self-management intervention. METHODS: This study consists of five phases: (1) intervention development; (2) feasibility testing; (3) usability testing; (4) intervention refinement; and (5) intervention evaluation using mixed methods. We will employ evidence-based strategies and tools, using a theoretical framework of self-efficacy, then elicit user feedback through focus groups and individual user testing sessions. Using iterative redesign the intervention will be refined. Once finalized, the impact of the website on patient self-efficacy, quality of life, self-care, HbA1c, LDL-cholesterol, blood pressure and weight will be assessed through a non-randomized observational cohort study using repeated measures modeling and individual interviews. DISCUSSION: Increasing use of the World Wide Web by consumers for health information and ongoing revolutions in social media are strong indicators that users are primed to welcome a new era of technology in health care. However, their full potential is hindered by limited knowledge regarding their effectiveness, poor usability, and high attrition rates. Our development and research agenda aims to address these limitations by improving usability, identifying characteristics associated with website use and attrition, and developing strategies to sustain patient use in order to maximize clinical outcomes.     

Online usability and patients with long-term conditions: a mixed-methods approach

BackgroundTo improve the information position of health care consumers and to facilitate decision-making behavior in health the Dutch ministry of Health commissioned the National Institute for Public Health and the Environment to develop, host and manage a public national health and care portal (www.kiesbeter.nl) on the Internet. The portal is used by over 4 million visitors in 2010. Among them, an increasing amount of patients that use the portal for information and decision making on medical issues, healthy living, health care providers and other topics.ObjectiveFirst objective is to examine what usability aspects of the portal kiesBeter.nl matter for chronic patients and their informal carers with regard to information seeking, self-management, decision making, on line health information and other variables. Second objective is to make evidence-based practical recommendations for usability improvement.MethodsAn innovative combination of techniques (semi-structured interviews; eHealth Literacy scale; scenario-based study using think-aloud protocol and screen capture software; focus group) is used to study usability and on line information seeking behavior in a non random judgment sample of three groups of patients (N = 21) with long-term medical conditions (arthritis, asthma and diabetes).ResultsThe search strategy mostly used (65%) by the relatively well-educated subjects is ‘orienteering’. Users with long-term conditions and their carers expect tailored support from a national health portal, to help them navigate, search and find the detailed information they need. They encounter serious problems with these usability issues some of which are disease-specific. Patients indicate a need for personalized information. They report low impact on self-management and decision making. Overall judgment of usability is rated 7 on a Likert type 0–10 scale. Based on the outcomes recommendations could be formulated. These have led to major adaptations to improve usability.LimitationsA non-representative composition of a small non random judgment sample does not permit generalization to other populations and cognitive bias cannot be quantified. However if mixed methods are applied valid conclusions can be drawn with regard to usability issues.     

Optimization of infobutton design and Implementation: A systematic review

ObjectiveInfobuttons are clinical decision tools embedded in the electronic health record that attempt to link clinical data with context sensitive knowledge resources. We systematically reviewed technical approaches that contribute to improved infobutton design, implementation and functionality.MethodsWe searched databases including MEDLINE, EMBASE, and the Cochrane Library database from inception to March 1, 2016 for studies describing the use of infobuttons. We selected full review comparative studies, usability studies, and qualitative studies examining infobutton design and implementation. We abstracted usability measures such as user satisfaction, impact, and efficiency, as well as prediction accuracy of infobutton content retrieval algorithms and infobutton adoption/interoperability.ResultsWe found 82 original research studies on infobuttons. Twelve studies met criteria for detailed abstraction. These studies investigated infobutton interoperability (1 study); tools to help tailor infobutton functionality (1 study); interventions to improve user experience (7 studies); and interventions to improve content retrieval by improving prediction of relevant knowledge resources and information needs (3 studies). In-depth interviews with implementers showed the Health Level Seven (HL7) Infobutton standard to be simple and easy to implement. A usability study demonstrated the feasibility of a tool to help medical librarians tailor infobutton functionality. User experience studies showed that access to resources with which users are familiar increased user satisfaction ratings; and that links to specific subsections of drug monographs increased information seeking efficiency. However, none of the user experience improvements led to increased usage uptake. Recommender systems based on machine learning algorithms outperformed hand-crafted rules in the prediction of relevant resources and clinicians’ information needs in a laboratory setting, but no studies were found using these techniques in clinical settings. Improved content indexing in one study led to improved content retrieval across three health care organizations.ConclusionBest practice technical approaches to ensure optimal infobutton functionality, design and implementation remain understudied. The HL7 Infobutton standard has supported wide adoption of infobutton functionality among clinical information systems and knowledge resources. Limited evidence supports infobutton enhancements such as links to specific subtopics, configuration of optimal resources for specific tasks and users, and improved indexing and content coverage. Further research is needed to investigate user experience improvements to increase infobutton use and effectiveness.     

Complementary methods of system usability evaluation: Surveys and observations during software design and development cycles

Poor usability of clinical information systems delays their adoption by clinicians and limits potential improvements to the efficiency and safety of care. Recurring usability evaluations are therefore, integral to the system design process. We compared four methods employed during the development of outpatient clinical documentation software: clinician email response, online survey, observations and interviews. Results suggest that no single method identifies all or most problems. Rather, each approach is optimal for evaluations at a different stage of design and characterizes different usability aspect. Email responses elicited from clinicians and surveys report mostly technical, biomedical, terminology and control problems and are most effective when a working prototype has been completed. Observations of clinical work and interviews inform conceptual and workflow-related problems and are best performed early in the cycle. Appropriate use of these methods consistently during development may significantly improve system usability and contribute to higher adoption rates among clinicians and to improved quality of care.     

Teaching clinical reasoning and decision-making skills to nursing students: Design,development, and usability evaluation of a serious game

BackgroundSerious games (SGs) are a type of simulation technology that may provide nursing students with the opportunity to practice their clinical reasoning and decision-making skills in a safe and authentic environment. Despite the growing number of SGs developed for healthcare professionals, few SGs are video based or address the domain of home health care.AimsThis paper aims to describe the design, development, and usability evaluation of a video based SG for teaching clinical reasoning and decision-making skills to nursing students who care for patients with chronic obstructive pulmonary disease (COPD) in home healthcare settings.MethodsA prototype SG was developed. A unified framework of usability called TURF (Task, User, Representation, and Function) and SG theory were employed to ensure a user-centered design. The educational content was based on the clinical decision-making model, Bloom’s taxonomy, and a Bachelor of Nursing curriculum. A purposeful sample of six participants evaluated the SG prototype in a usability laboratory. Cognitive walkthrough evaluations, a questionnaire, and individual interviews were used for the usability evaluation. The data were analyzed using qualitative deductive content analysis based on the TURF framework elements and related usability heuristics.ResultsThe SG was perceived as being realistic, clinically relevant, and at an adequate level of complexity for the intended users. Usability issues regarding functionality and the user–computer interface design were identified. However, the SG was perceived as being easy to learn, and participants suggested that the SG could serve as a supplement to traditional training in laboratory and clinical settings.ConclusionsUsing video based scenarios with an authentic COPD patient and a home healthcare registered nurse as actors contributed to increased realism. Using different theoretical approaches in the SG design was considered an advantage of the design process. The SG was perceived as being useful, usable, and satisfying. The achievement of the desired functionality and the minimization of user–computer interface issues emphasize the importance of conducting a usability evaluation during the SG development process.     

The value of Retrospective and Concurrent Think Aloud in formative usability testing of a physician data query tool

ObjectiveTo compare the performance of the Concurrent (CTA) and Retrospective (RTA) Think Aloud method and to assess their value in a formative usability evaluation of an Intensive Care Registry-physician data query tool designed to support ICU quality improvement processes.MethodsSixteen representative intensive care physicians participated in the usability evaluation study. Subjects were allocated to either the CTA or RTA method by a matched randomized design. Each subject performed six usability-testing tasks of varying complexity in the query tool in a real-working context. Methods were compared with regard to number and type of problems detected. Verbal protocols of CTA and RTA were analyzed in depth to assess differences in verbal output. Standardized measures were applied to assess thoroughness in usability problem detection weighted per problem severity level and method overall effectiveness in detecting usability problems with regard to the time subjects spent per method.ResultsThe usability evaluation of the data query tool revealed a total of 43 unique usability problems that the intensive care physicians encountered. CTA detected unique usability problems with regard to graphics/symbols, navigation issues, error messages, and the organization of information on the query tool’s screens. RTA detected unique issues concerning system match with subjects’ language and applied terminology. The in-depth verbal protocol analysis of CTA provided information on intensive care physicians’ query design strategies. Overall, CTA performed significantly better than RTA in detecting usability problems. CTA usability problem detection effectiveness was 0.80 vs. 0.62 (p < 0.05) respectively, with an average difference of 42% less time spent per subject compared to RTA. In addition, CTA was more thorough in detecting usability problems of a moderate (0.85 vs. 0.7) and severe nature (0.71 vs. 0.57).ConclusionIn this study, the CTA is more effective in usability-problem detection and provided clarification of intensive care physician query design strategies to inform redesign of the query tool. However, CTA does not outperform RTA. The RTA additionally elucidated unique usability problems and new user requirements. Based on the results of this study, we recommend the use of CTA in formative usability evaluation studies of health information technology. However, we recommend further research on the application of RTA in usability studies with regard to user expertise and experience when focusing on user profile customized (re)design.     

Blended face-to-face and online/computer-based education approaches in chronic disease self-management: A critical interpretive synthesis

ObjectiveTo review the literature on chronic disease self-management programs that blend face-to-face and online/computer-based education design and delivery.MethodsA critical interpretive synthesis was conducted. Studies that described blended chronic disease self-management programs were reviewed. Two reviewers performed independent database searches, eligibility screening, and data extraction. Findings were synthesized using a conceptual mapping process.ResultsTwelve articles were included in the final review. Studies focused on patients with diagnoses of diabetes, asthma, and chronic obstructive pulmonary disorder. Factors influencing the design and delivery of programs focused on patient characteristics (such as disease prognosis, time since diagnosis, social determinants of health, health literacy, and proficiency with online/computer-based technologies).ConclusionsBlended learning self-management programs should consider the suitability of programs in light of health conditions and patient characteristics. Individual patient needs can be identified through clinician-driven assessments, including collaborative goal setting and the selection of pertinent educational tools.Practice ImplicationsWhen considering the design and delivery of chronic disease self-management education programs, healthcare providers should consider three factors: 1) patient characteristics, 2) learning perspectives, and 3) design technology options that best meet patient abilities, clinician expertise, and administrative capacity.     

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.     

Diabetes self-management: perspectives of Latino patients and their health care providers

Lifestyle modification programs tailored to experience, culture, psychosocial characteristics, and world-view can improve knowledge, self-care behaviors, and glucose control among Latinos with diabetes. Few data exist, however, on improving diabetes self-management among Latinos. In addition, views and practices of practitioners caring for these patients have received little attention. OBJECTIVE: This study describes findings from qualitative research to inform the refinement of self-management interventions tailored to Latino patients with type 2 diabetes. METHODS: Two practitioner focus groups assessed perceptions of patients' knowledge, attitudes, and behaviors. Four patient focus groups examined knowledge, beliefs, practices, barriers, and facilitators. Data were transcribed and subjected to content analysis. RESULTS: Thirty-seven patients seeking care at a community clinic participated, along with 15 health care practitioners. Important knowledge gaps regarding diabetes causation and self-management were identified. Negative attitudes towards self-management were common among patients. Key facilitators included strong religious faith and support of medical practitioners. Families both facilitated and prevented adoption of self-management practices. CONCLUSION: This study provides unique insights into the knowledge, attitudes, practices, and perceived barriers facing Latino patients and their providers regarding diabetes self-management. PRACTICE IMPLICATIONS: Study findings underscore the need to develop tailored programs for this population and to train practitioners on their implementation.     

A latent profile analysis on patient empowerment programme in a Hong Kong primary care setting

ObjectiveThis study identified the profiles of subgroups of type 2 diabetic (T2DM) patients of the Patient Empowerment Programme (PEP) by different levels of benefits gained in diabetic self-management behaviors, self-efficacy, and health literacy.MethodsThis study adopted a non-experimental repeated-measures design on T2DM patients who joined PEP, using structured questionnaires. Latent profile analysis (LPA) was used to identify patterns of participants’ change on the outcome measures.ResultsFindings of LPA revealed that participants who were older, unemployed, weaker in diabetic self-management, and having a higher self-perception in personal disease risk were more likely to join the empowerment sessions and gained more benefits from the program. Participants with lower impairment in energy function and lower autonomy in personal health care showed more improvement in the outcomes.ConclusionThe study identified significant factors associated with patients’ participation on and benefits gained from a service delivery model integrating health education and patient empowerment in a primary care setting.Practice implicationFindings from this study shed light on strategies to improve the PEP design in order to meet the needs of individuals with different health-related profiles.     

Adopting the sensemaking perspective for chronic disease self-management

BackgroundSelf-monitoring is an integral component of many chronic diseases; however few theoretical frameworks address how individuals understand self-monitoring data and use it to guide self-management.PurposeTo articulate a theoretical framework of sensemaking in diabetes self-management that integrates existing scholarship with empirical data.MethodsThe proposed framework is grounded in theories of sensemaking adopted from organizational behavior, education, and human–computer interaction. To empirically validate the framework the researchers reviewed and analyzed reports on qualitative studies of diabetes self-management practices published in peer-reviewed journals from 2000 to 2015.ResultsThe proposed framework distinguishes between sensemaking and habitual modes of self-management and identifies three essential sensemaking activities: perception of new information related to health and wellness, development of inferences that inform selection of actions, and carrying out daily activities in response to new information. The analysis of qualitative findings from 50 published reports provided ample empirical evidence for the proposed framework; however, it also identified a number of barriers to engaging in sensemaking in diabetes self-management.ConclusionsThe proposed framework suggests new directions for research in diabetes self-management and for design of new informatics interventions for data-driven self-management.     

Patient empowerment: reflections on the challenge of fostering the adoption of a new paradigm

Diabetes is a self-managed illness in which the decisions most affecting the health and well being of patients are made by the patients themselves. Many of these decisions involve routine activities of daily living (e.g., nutrition, physical activity). Effective diabetes care requires patients and health care professionals to collaborate in the development of self-management plans that integrate the clinical expertise of health care professionals with the concerns, priorities and resources of the patient. Collaborative diabetes care requires a new "empowerment" paradigm that involves a fundamental redefinition of roles and relationships of health care professionals and patients. The challenges of fostering the adoption of a new paradigm differ substantially from those associated with the introduction of new technology. Those challenges are discussed in this paper.     

Do participation and personalization matter? A model-driven evaluation of an Internet-based patient education intervention for fibromyalgia patients

Objectives

To evaluate the effectiveness of an Internet-based patient education intervention, which was designed upon principles of personalization and participatory design.

Methods

Fifteen months after the first release of the website, 209 fibromyalgia patients recruited through health professionals completed an online questionnaire to assess patients’ use of the website, health knowledge, self-management behavior, and health outcomes. These constructs were combined into an a-priory model that was tested using a structural equation modeling approach.

Results

Results show that the usage of certain tools of the website – designed and personalized involving the end users – impacts patients’ health knowledge, which in turn impacts self-management. Improvements in self-management ultimately lower the impact of Fibromyalgia Syndrome leading to better health outcomes.

Conclusion

This study empirically confirmed that the adoption of a participatory approach to the design of eHealth interventions and the use of personalized contents enhance the overall effectiveness of systems.

Practice implications

More time and effort should be invested in involving patients in the preliminary phases of the development of Internet-based patient education interventions and in the definition of models that can guide the systems’ evaluation beyond technology-related variables such as usability, accessibility or adoption.     

A systematic review of IT for diabetes self-management: Are we there yet?

BackgroundRecent advances in information technology (IT) coupled with the increased ubiquitous nature of information technology (IT) present unique opportunities for improving diabetes self-management. The objective of this paper is to determine, in a systematic review, how IT has been used to improve self-management for adults with Type 1 and Type 2 diabetes.MethodsThe review covers articles extracted from relevant databases using search terms related information technology and diabetes self-management published after 1970 until August 2012. Additional articles were extracted using the citation map in Web of Science. Articles representing original research describing the use of IT as an enabler for self-management tasks performed by the patient are included in the final analysis.ResultsOverall, 74% of studies showed some form of added benefit, 13% articles showed no-significant value provided by IT, and 13% of articles did not clearly define the added benefit due to IT. Information technologies used included the Internet (47%), cellular phones (32%), telemedicine (12%), and decision support techniques (9%). Limitations and research gaps identified include usability, real-time feedback, integration with provider electronic medical record (EMR), as well as analytics and decision support capabilities.ConclusionThere is a distinct need for more comprehensive interventions, in which several technologies are integrated in order to be able to manage chronic conditions such as diabetes. Such IT interventions should be theoretically founded and should rely on principles of user-centered and socio-technical design in its planning, design and implementation. Moreover, the effectiveness of self-management systems should be assessed along multiple dimensions: motivation for self-management, long-term adherence, cost, adoption, satisfaction and outcomes as a final result.     

Communicating with older diabetes patients: self-management and social comparison

OBJECTIVE: The health status and life experiences of older diabetes patients may be highly heterogeneous, thus making their perspectives particularly relevant for developing individualized self-management plans for this population. Our earlier research showed older diabetes patients' healthcare goals and self-management behaviors are frequently shaped through social comparisons with peers/family members. The present paper explores this role of social comparison in their self-management practices and develops a conceptual model depicting the process. METHODS: Data were collected using open-ended, semi-structured interviews to elicit 28 older, type 2 diabetes patients' healthcare goals and self-management practices. Qualitative techniques were used to extract salient themes. RESULTS: Social comparison plays a salient role in routinizing older patients' self-management practices. Almost all patients assess their self-management by making "downward" comparisons with individuals doing worse than them; "upward" comparisons are rarely invoked. Occasionally patients' social comparisons lead them to adopt "normalizing" behaviors resulting in deviations from medically recommended self-care. CONCLUSION: The findings formed the basis for developing a conceptual model delineating the role of social comparison in self-management that can be beneficial for providers in tailoring educational interventions for self-management. PRACTICE IMPLICATIONS: Fostering these comparisons can help providers enhance communication on initiating and sustaining self-management practices.     

Mobile Applications for Diabetics: A Systematic Review and Expert-Based Usability Evaluation Considering the Special Requirements of Diabetes Patients Age 50 Years or Older

Background

A multitude of mhealth (mobile health) apps have been developed in recent years to support effective self-management of patients with diabetes mellitus type 1 or 2.

Objective

We carried out a systematic review of all currently available diabetes apps for the operating systems iOS and Android. We considered the number of newly released diabetes apps, range of functions, target user groups, languages, acquisition costs, user ratings, available interfaces, and the connection between acquisition costs and user ratings. Additionally, we examined whether the available applications serve the special needs of diabetes patients aged 50 or older by performing an expert-based usability evaluation.

Methods

We identified relevant keywords, comparative categories, and their specifications. Subsequently, we performed the app review based on the information given in the Google Play Store, the Apple App Store, and the apps themselves. In addition, we carried out an expert-based usability evaluation based on a representative 10% sample of diabetes apps.

Results

In total, we analyzed 656 apps finding that 355 (54.1%) offered just one function and 348 (53.0%) provided a documentation function. The dominating app language was English (85.4%, 560/656), patients represented the main user group (96.0%, 630/656), and the analysis of the costs revealed a trend toward free apps (53.7%, 352/656). The median price of paid apps was €1.90. The average user rating was 3.6 stars (maximum 5). Our analyses indicated no clear differences in the user rating between free and paid apps. Only 30 (4.6%) of the 656 available diabetes apps offered an interface to a measurement device. We evaluated 66 apps within the usability evaluation. On average, apps were rated best regarding the criterion “comprehensibility” (4.0 out of 5.0), while showing a lack of “fault tolerance” (2.8 out of 5.0). Of the 66 apps, 48 (72.7%) offered the ability to read the screen content aloud. The number of functions was significantly negative correlated with usability. The presence of documentation and analysis functions reduced the usability score significantly by 0.36 and 0.21 points.

Conclusions

A vast number of diabetes apps already exist, but the majority offer similar functionalities and combine only one to two functions in one app. Patients and physicians alike should be involved in the app development process to a greater extent. We expect that the data transmission of health parameters to physicians will gain more importance in future applications. The usability of diabetes apps for patients aged 50 or older was moderate to good. But this result applied mainly to apps offering a small range of functions. Multifunctional apps performed considerably worse in terms of usability. Moreover, the presence of a documentation or analysis function resulted in significantly lower usability scores. The operability of accessibility features for diabetes apps was quite limited, except for the feature “screen reader”.