Doctor of Philosophy

dissertationDiabetes is a complex condition that can significantly affect quality of life and economic burden. New approaches to promoting diabetes knowledge and support to enhance diabetes management are necessary. Peer health is occurring within the diabetes online community (DOC), although very little is known about how it is being used to help manage diabetes. The purpose of this research was to better understand peer health within the nonmoderated, nontrained peer context of the DOC. In this multiple method approach, a cross-sectional survey was posted to DOC social media sites to describe adult DOC users, indicators of their health status, and perceived credibility of DOC information. A baby boomer subset of participants were interviewed to understand why they participated in the DOC, how they anticipated continued DOC use as they aged, and how they determined credibility of DOC information. Transcripts were analyzed using content analysis. Apomediation Theory guided this research. There were several significant findings. Individuals highly engaged with the DOC had better glycemic control. DOC users had high levels of diabetes self-care, health-related quality of life, and social capital. Baby boomers were using the DOC to increase their knowledge to improve self-care and for emotional support. The DOC was used in adjunct to, not in place of, regular healthcare visits to fill gaps in tacit knowledge and support. Baby boomer participants valued the wisdom of experienced individuals, "diabetes elders." Participants employed a process to find credible health information through the guidance of peers. Overall, DOC users found the DOC to be helpful with very little harm reported, suggesting DOC use is beneficial with low risk. Finally, DOC users found information from their healthcare providers to be more competent and trustworthy than information from the DOC, indicating DOC users still find their healthcare providers valuable. The findings from this research are promising. DOC users engage in a reciprocal process of sharing diabetes related experiences, encouraging knowledge attainment and support. Peer health in a naturally occurring online environment has the capacity to augment the traditional healthcare model by providing health information and peer support conveniently and at a low cost

Enhancing mHealth Technology in the Patient-Centered Medical Home Environment to Activate Patients With Type 2 Diabetes: A Multisite Feasibility Study Protocol.

BackgroundThe potential of mHealth technologies in the care of patients with diabetes and other chronic conditions has captured the attention of clinicians and researchers. Efforts to date have incorporated a variety of tools and techniques, including Web-based portals, short message service (SMS) text messaging, remote collection of biometric data, electronic coaching, electronic-based health education, secure email communication between visits, and electronic collection of lifestyle and quality-of-life surveys. Each of these tools, used alone or in combination, have demonstrated varying degrees of effectiveness. Some of the more promising results have been demonstrated using regular collection of biometric devices, SMS text messaging, secure email communication with clinical teams, and regular reporting of quality-of-life variables. In this study, we seek to incorporate several of the most promising mHealth capabilities in a patient-centered medical home (PCMH) workflow.ObjectiveWe aim to address underlying technology needs and gaps related to the use of mHealth technology and the activation of patients living with type 2 diabetes. Stated differently, we enable supporting technologies while seeking to influence patient activation and self-care activities.MethodsThis is a multisite phased study, conducted within the US Military Health System, that includes a user-centered design phase and a PCMH-based feasibility trial. In phase 1, we will assess both patient and provider preferences regarding the enhancement of the enabling technology capabilities for type 2 diabetes chronic care management. Phase 2 research will be a single-blinded 12-month feasibility study that incorporates randomization principles. Phase 2 research will seek to improve patient activation and self-care activities through the use of the Mobile Health Care Environment with tailored behavioral messaging. The primary outcome measure is the Patient Activation Measure scores. Secondary outcome measures are Summary of Diabetes Self-care Activities Measure scores, clinical measures, comorbid conditions, health services resource consumption, and technology system usage statistics.ResultsWe have completed phase 1 data collection. Formal analysis of phase 1 data has not been completed. We have obtained institutional review board approval and began phase 1 research in late fall 2016.ConclusionsThe study hypotheses suggest that patients can, and will, improve their activation in chronic care management. Improved activation should translate into improved diabetes self-care. Expected benefits of this research to the scientific community and health care services include improved understanding of how to leverage mHealth technology to activate patients living with type 2 diabetes in self-management behaviors. The research will shed light on implementation strategies in integrating mHealth into the clinical workflow of the PCMH setting.Trial registrationClinicalTrials.gov NCT02949037. https://clinicaltrials.gov/ct2/show/NCT02949037. (Archived by WebCite at http://www.webcitation.org/6oRyDzqei)

The conceptual and practical ethical dilemmas of using health discussion board posts as research data.

Increasing numbers of people living with a long-term health condition are putting personal health information online, including on discussion boards. Many discussion boards contain material of potential use to researchers; however, it is unclear how this information can and should be used by researchers. To date there has been no evaluation of the views of those individuals sharing health information online regarding the use of their shared information for research purposes

Open Humans:A platform for participant-centered research and personal data exploration

Background Many aspects of our lives are now digitized and connected to the internet. As a result, individuals are now creating and collecting more personal data than ever before. This offers an unprecedented chance for human-participant research ranging from the social sciences to precision medicine. With this potential wealth of data comes practical problems (e.g., how to merge data streams from various sources), as well as ethical problems (e.g., how best to balance risks and benefits when enabling personal data sharing by individuals). Results To begin to address these problems in real time, we present Open Humans, a community-based platform that enables personal data collections across data streams, giving individuals more personal data access and control of sharing authorizations, and enabling academic research as well as patient-led projects. We showcase data streams that Open Humans combines (e.g., personal genetic data, wearable activity monitors, GPS location records, and continuous glucose monitor data), along with use cases of how the data facilitate various projects. Conclusions Open Humans highlights how a community-centric ecosystem can be used to aggregate personal data from various sources, as well as how these data can be used by academic and citizen scientists through practical, iterative approaches to sharing that strive to balance considerations with participant autonomy, inclusion, and privacy.publishedVersio

Digital Health Interventions for Adults With Type 2 Diabetes: Qualitative Study of Patient Perspectives on Diabetes Self-Management Education and Support

Background: The prevalence of type 2 diabetes is increasing globally, and health services in many countries are struggling with the morbidity, mortality, and costs associated with the complications of this long-term condition. Diabetes self-management education (DSME) and behavioral support can reduce the risks of developing diabetes-related complications and improve glycemic control. However, their uptake is low. Digital health interventions (DHI) can provide sustained support and may overcome challenges associated with attending diabetes self-management sessions. They have the potential for delivery at multiple locations at convenient times, anonymity, and presentation of content in attractive and tailored formats. This study investigates the needs and wants of patients with type 2 diabetes to inform the development of digital self-management education and support. Objective: The objective of this study was to explore patient perspectives on unmet needs for self-management and support and the role of DHI in adults living with type 2 diabetes. Methods: This study used a qualitative approach based on data generated from 4 focus groups with 20 patients. Results: The data generated by the focus groups illustrated the significant burden that the diagnosis of diabetes places on many patients and the negative impacts on their emotional well-being, work, social life, and physical health. Although patients’ experiences of the health care services varied, there was agreement that even the best services were unable to meet all users’ needs to support the emotional regulation, psychological adjustment, and behavioral changes needed for successful self-management. Conclusions: By focusing on medical management and information provision, existing health care services and education programs may not be adequately meeting all the needs of patients with type 2 diabetes. DHIs have the potential to improve access to DSME and behavioral support and extend the range of content offered by health services to fit with a wider range of patient needs. Features that could help DHIs address some of the unmet needs described by participants in this study included placing an emphasis on emotional and role management, being available at all times, having up-to-date evidence-based guidance for patients, and providing access to peer-generated and professional advice

Where can teens find health information? A survey of web portals designed for teen health information seekers

The Web is an important source for health information for most teens with access to the Web (Gray et al, 2005a; Kaiser, 2001). While teens are likely to turn to the Web for health information, research has indicated that their skills in locating, evaluating and using health information are weak (Hansen et al, 2003; Skinner et al, 2003, Gray et al, 2005b). This behaviour suggests that the targeted approach to finding health information that is offered by web portals would be useful to teens. A web portal is the entry point for information on the Web. It is the front end, and often the filter, that users must pass through in order to link to actual content. Unlike general search engines such as Google, content that is linked to a portal has usually been pre-selected and even created by the organization that hosts the portal, assuring some level of quality control. The underlying architecture of the portal is structured and thus offers an organized approach to exploring a specific health topic. This paper reports on an environmental scan of the Web, the purpose of which was to identify and describe portals to general health information, in English and French, designed specifically for teens. It answers two key questions. First of all, what portals exist? And secondly, what are their characteristics? The portals were analyzed through the lens of four attributes: Usability, interactivity, reliability and findability. Usability is a term that incorporates concepts of navigation, layout and design, clarity of concept and purpose, underlying architecture, in-site assistance and, for web content with text, readability. Interactivity relates to the type of interactions and level of engagement required by the user to access health information on a portal. Interaction can come in the form of a game, a quiz, a creative experience, or a communication tool such as an instant messaging board, a forum or blog. Reliability reflects the traditional values of accuracy, currency, credibility and bias, and in the web-based world, durabililty. Findability is simply the ease with which a portal can be discovered by a searcher using the search engine that is most commonly associated with the Web by young people - Google - and using terms related to teen health. Findability is an important consideration since the majority of teens begin their search for health information using search engines (CIBER, 2008; Hansen et al, 2003). The content linked to by the portals was not evaluated, nor was the portals’ efficacy as a health intervention. Teens looking for health information on the Web in English have a wide range of choices available but French-language portals are much rarer and harder to find. A majority of the portals found and reviewed originated from hospitals, associations specializing in a particular disease, and governmental agencies, suggesting that portals for teens on health related topics are generally reliable. However, only a handful of the portals reviewed were easy to find, suggesting that valuable resources for teens remain buried in the Web

Towards Future Health Social Networking: Patient Generated Content And The Role Of Community Pharmacists

In this paper we aim to develop a patient centered perspective that puts at the centre of our focus patient practices and their appropriation of medical information, prescribed use of drugs and of health-care technology. Within this frame, we will initially discuss evidence from a qualitative case study on the role of community pharmacists in patients dealing with their problems. In line with the 2.0 revolution, we then suggest a technological architecture based on patient generated content and their health social networking – as many Health 2.0 platforms already do – that focuses on local relation and take into account the empirically assessed role of pharmacists and investing them with an interesting local task. Future challenges and initial reflections of the proposed approach will be discussed at the end

Issues in Evaluating Health Department Web-Based Data Query Systems: Working Papers

Compiles papers on conceptual and methodological topics to consider in evaluating state health department systems that provide aggregate data online, such as taxonomy, logic models, indicators, and design. Includes surveys and examples of evaluations

The Impact of ICT on Health Promotion: A Randomized Experiment with Diabetic Patients

This paper summarizes randomized experiment to study the effects of an Internetbased intervention on type 2 diabetes patients in Montevideo, Uruguay. The intervention consisted of a specially designed website and an electronic social network where participants were able to navigate freely, download materials, and interact with other diabetics and with specialists. No significant impact was found on participants` knowledge, behavior, or health outcomes. It was also found that only a minority of patients logged on to the website, and most were only reached by email and mobile text (SMS). Participation in the website is correlated with patients` characteristics, such as gender, marital status, and education.Randomized trial, Diabetes, Public health, Uruguay

Editors’ Introduction to the Special Section on Patient-centered e-Health: Research Opportunities and Challenges

We initiated the CAIS Special Section on Patient-Centered e-Health (PCEH) to provide support for the PCEH discipline, which has recently emerged to meet the practical need of supporting patients in managing their health. Because there are significant challenges in designing, developing, and using PCEH applications, there are many opportunities for IS researchers to study familiar topics, but in the very different healthcare delivery context. As an emerging discipline, PCEH is struggling with reconciling ambiguous definitions across studies, defining the discipline boundaries (how they overlap and are distinct from related research areas), and developing the exemplary research studies that can guide future research. Thus, the goal of this Special Section, as far as possible, is to gather a set of research articles that will move the PCEH discipline forward by providing resources and examples to support future PCEH research that is theory-based, is focused, and can build a cumulative literature and research tradition. In this Introduction to the CAIS Special Section, we argue that IS researchers are especially well-equipped to undertake PCEH research and thereby overcome the many challenges unique to PCEH study. We discuss the challenges in the emerging PCEH discipline and present approaches that IS researchers might take to meet these challenges and produce the exemplary studies needed to further the discipline. Our arguments and observations are supported by the fourteen articles that make up the Special Section. These fourteen articles represent four areas of emerging PCEH research, namely PCEH and the Healthcare Delivery Context; Models of Acceptance, Use, and/or Outcomes; Patient-centered Design Research; and Assessment of PCEH websites