A Comprehensive Digital Self-care Support System for Older Adults With Multiple Chronic Conditions: Development, Feasibility, and Usability Testing of myHESTIA.

The objective of this mixed methods study is to evaluate the need for a comprehensive digital self-care support system (CDSSS) for older adults with multiple chronic conditions (MCC) and to examine whether such a system can be developed to enable daily capture of self-care data. The 3-phase study involved Phase-1: user needs assessment and prototype development; Phase-2: preliminary user evaluation of the prototype; and Phase-3: 4-week small group usability and feasibility testing of the tracking component of the prototype. Results of Phase-1 show the need for a CDSSS. Phase-2 results demonstrate interest among older adults in using such a CDSSS and Phase-3 findings show that older adults found the tracking component of the system easy to use for capturing daily inputs. Overall, the findings show that it is feasible to design a CDSSS for older adults with MCC in a way that is usable and functional for them.

Exploring Interactive Survivorship Care Plans to Support Breast Cancer Survivors: Protocol for a Randomized Controlled Trial.

BACKGROUND: Breast cancer is the most common form of cancer among American women, accounting for 23% of all cancer survivors nationally. Yet, the availability of adequate resources and tools for supporting breast cancer survivors has not kept up with the rapid advancement in treatment options, resulting in unmet supportive care needs, particularly among low-income and minority populations. This study explores an alternative means of delivering breast cancer survivorship care plans (SCPs), with the aim of improving survivor morbidity, patient knowledge, and self-management of treatment-related symptoms, as well as addressing inconsistencies in follow-up care visits. OBJECTIVE: The overall goal of this study is to improve the uptake of SCP recommendations via an educational intervention for breast cancer survivors, to improve treatment-related morbidity, patient knowledge, self-management, and adherence to follow-up visits. The specific aims of the study are to (1) evaluate the feasibility of the online SCP, and (2) assess the impact of the online SCP on survivorship outcomes. METHODS: We will enroll 50 breast cancer survivors who have completed initial breast cancer treatment into a 2-armed, randomized, waitlist-controlled pilot trial, and collect data at baseline and 6 months. For the first aim, we will use mixed methods, including surveys and personal interviews among the intervention group, to determine the feasibility of providing an online, interactive SCP (called ACESO) based on the survivors' online user experience and their short-term adoption. For the secondary aim, we will compare the 2 groups to assess the primary outcomes of survivor knowledge, self-efficacy for self-management, perceived peer support, and adherence to SCP-recommended posttreatment follow-up visits to oncology and primary care; and the secondary outcomes of treatment-related morbidity (body weight, fatigue, depression, anxiety, sexual function, distress, and sleep quality). We assess these outcomes by using measurements from validated instruments with robust psychometric properties. RESULTS: We have developed and refined the online breast cancer survivorship plan, ACESO, with consultation from breast cancer oncologists, nurses, and survivors. Approval for the study protocol has been obtained from the Institutional Review Board. An advisory board has also been established to provide oversight and recommendations on the conduct of the study. The study will be completed over a period of 2 years. CONCLUSIONS: The results of this pilot study will inform the feasibility and design of a larger-scale pragmatic trial to evaluate the impact of an online breast cancer SCP on treatment-related morbidity and self-efficacy for self-management. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/23414.

Finding the Edges of Problems: Social Media as an Exploratory Research Tool.

Social media use in public health and other health related research applications has seen a rapid increase in recent years. However, there has been very limited utilization of this growing digital sector in agricultural injury research. Social media offers immense potential in gathering informal data, both text and images, converting them into knowledge, which can open up avenues for research, policy, and practice. There are a number of ways social media data can be utilized in agricultural injury research. This paper touches on the adoption of these data sources in health research and discusses the use of social media as an exploratory research tool that can peer into and identify the edges of potential health and safety problems.

Mobile applications for breast cancer survivorship and self-management: A systematic review.

The use of mobile technology and mobile apps has become pervasive in our daily lives for completing a variety of daily tasks. Mobile health (mHealth) apps can provide an accessible platform for self-management among breast cancer (BC) survivors, as they recover from not just the intensive cancer treatments, but also their associated side-effects. They also offer a means to learn about survivorship topics and connect with peer survivors online, irrespective of their geographical location. This study is an attempt to assess the availability and characterize the self-management features of free mobile apps for breast cancer survivors on the Google Play (Android) and Apple App Store (iOS). Out of 249 such apps for the Android, only eight satisfied initial criteria, while only one of 174 iOS apps that met inclusion criteria was included for further analysis. A content analysis of the nine apps that met inclusion criteria was conducted to assess the inclusion of the following mHealth self-management features derived from the Chronic Care Model: symptom tracking; survivorship education; information-sharing with family and/or caregivers; scheduling follow-up visits; personal alerts and reminders; and social networking. Survivorship education was found to be the most common self-management feature among the apps reviewed, followed by social networking. The results of this study highlight the dearth of available mHealth resources for BC survivors. Future efforts in app development should involve survivors and healthcare providers to ensure comprehensive resources that address their unmet needs are made more accessible.

Personal decision support for survivor engagement: formulation and feasibility evaluation of a conceptual framework for implementing online cancer survivorship care plans.

BACKGROUND: Although cancer survivorship care plans have been in use for several years, they have been shown to not be effective in meeting the long-term needs of cancer survivors, in addition being generic and passive in nature. Interactive survivorship care plans in the form of a personal decision support aid could provide an opportunity to not only engage survivors in their health care, but also capture meaningful treatment-related outcomes to use as a rich data source as the basis for making informed decisions. The objective of this research is to formulate an evidence-based model framework for implementing breast cancer survivorship guidelines via an online breast cancer survivorship care plan (SCP). METHODS: The study was completed in three steps. In the first step, or the requirements gathering phase, we conducted personal interviews of breast cancer survivors to determine their use of the survivorship care plan (SCP) and related needs to determine core SCP functions and formulate an implementation framework for an online SCP. In the second step, we used the framework as a guide to design and develop the online SCP tool. Finally, in the third step, we conducted preliminary testing to determine the feasibility of the developed tool among online users. RESULTS: Fifteen breast cancer survivors were consulted, who reported several issues from their use of the traditional paper-based SCP. Four themes were identified that represent the SCP's core desired functions. Eight features were matched to implement these core functions. Using a personal decision approach, an online SCP tool called ACESO that incorporates these features and functions was developed. Preliminary feasibility testing yielded overall positive responses from breast cancer survivors (n = 51). CONCLUSION: Our study demonstrated that survivors face challenges from their use of a traditional paper-based SCP. The online SCP we developed is technically feasible and has the potential to effectively engage breast cancer survivors in self-management and shared decision-making with their clinicians and caregivers. Further testing is required to assess its usability and long-term impact.

Usability and acceptance evaluation of ACESO: a Web-based breast cancer survivorship tool.

PURPOSE: The specific objective of this research is to design and develop a personalized Web application to support breast cancer survivors after treatment, as they deal with post-treatment challenges, such as comorbidities and side effects of treatment. METHODOLOGY: A mixed-methods approach, utilizing a combination of think-aloud analysis, personal interviews, and surveys, was adopted for user acceptance and usability testing among a group of breast cancer survivors. User feedback was gathered on their perceived value of the application, and any user-interface issues that may hinder the overall usability were identified. RESULTS: The application's portability and capability of organizing their entire breast cancer-related medical history as well as tracking various quality of life indicators were perceived to be valuable features. The application had an overall high usability; however, certain sections of the application were not as intuitive to locate. Visual elements of the website were appreciated; however, overall experience would benefit from incorporating more sociable elements that exhibit positive re-enforcement within the end user and provide a friendlier experience. CONCLUSION: The results of the study showcase the need for more personalized tools and resources to support survivors in self-management. It also demonstrates the ability to integrate breast cancer survivorship care plans from diverse providers and paves the way to add further value-added features in consumer health applications, such as personal decision support. IMPLICATIONS FOR CANCER SURVIVORS: Using a personal decision support-based tool can serve as a training tool and resource, providing these patients with pertinent information about the various aspects of their long-term health, while educating them about any related side effects and symptoms. It is hoped that making such tools more accessible could help in engaging survivors to play an active role in managing their health and encourage shared decision-making with their providers.

Should Health Care Organizations Use Information Gleaned from Organization-Sponsored Patient Support Groups in Strategic Planning?

Online forums and partnerships with patients have several benefits, such as the creation of new products and services. However, as with any such initiatives, there are risks as well as benefits. Through analysis of a case of misinformation being spread through a health care provider-sponsored online support group for patients dealing with obesity, this article outlines best practices and strategies to deploy in such organization-sponsored patient support groups. These strategies would enable organizations and patients to use such forums to the fullest extent while preventing or managing their potential risks as best as possible.

How Should Organizations Promote Equitable Distribution of Benefits from Technological Innovation in Health Care?

Technological innovations typically benefit those who have good access to and an understanding of the underlying technologies. As such, technology-centered health care innovations are likely to preferentially benefit users of privileged socioeconomic backgrounds. Which policies and strategies should health care organizations adopt to promote equitable distribution of the benefits from technological innovations? In this essay, we draw on two important concepts-co-creation (the joint creation of value by multiple parties such as a company and its customers) and digitalization (the application of new digital technologies and the ensuing changes in sociotechnical structures and relationships)-and propose a set of policies and strategies that health care organizations could adopt to ensure that benefits from technological innovations are more equitably distributed among all target populations, including resource-poor communities and individuals.

Factors that impact Patient Web Portal Readiness (PWPR) among the underserved.

OBJECTIVE: Healthcare organizations in the US are increasingly using Patient Portals as a means to provide patients with partial access to their health records and thereby comply with the 'meaningful use' of Health Information Technology policy issued by the US federal government. Patient portals are used to not only provide access to parts of the health records such as lab results but also offer services such as customized educational materials and appointment scheduling. While prior studies examining the adoption rates of these patient portals have not offered consistent findings, many of the studies have reported limited adoption and use [1] of patient portals, especially among the underserved population. This study explores the factors behind the reduced adoption rate of patient portals among the underserved by focusing on their Patient Web Portal Readiness (PWPR). DESIGN: The study empirically evaluates the impact of three important variables on PWPR among the underserved: (a) Personal Health Information Management (PHIM) activities, (b) patient attitude toward personal health record keeping; and (c) use of Internet for health information seeking. The study also incorporates three other factors: (d) access to Internet; (e) demographics; and (f) presence of chronic illness. MEASUREMENTS: Data were collected through a survey from 132 patients from the underserved population who visited 5 free clinics in the Northern Virginia area in the US. The paper-based survey was administered to the patients who visited these free clinics for care. RESULTS: The study findings show support for the hypotheses related to the impact of the two key factors - Personal Health Information Management (PHIM) activities and attitude toward personal health record keeping - on PWPR. The findings also indicate that the use of Internet for health information seeking has relatively more impact than patient's Internet access on PWPR. Overall, the findings imply the critical importance of complementary activities - e.g., PHIM activities, Internet-based health information seeking - to enhance PWPR among the underserved population.

Using Social Media Data to Identify Potential Candidates for Drug Repurposing: A Feasibility Study.

BACKGROUND: Drug repurposing (defined as discovering new indications for existing drugs) could play a significant role in drug development, especially considering the declining success rates of developing novel drugs. Typically, new indications for existing medications are identified by accident. However, new technologies and a large number of available resources enable the development of systematic approaches to identify and validate drug-repurposing candidates. Patients today report their experiences with medications on social media and reveal side effects as well as beneficial effects of those medications. OBJECTIVE: Our aim was to assess the feasibility of using patient reviews from social media to identify potential candidates for drug repurposing. METHODS: We retrieved patient reviews of 180 medications from an online forum, WebMD. Using dictionary-based and machine learning approaches, we identified disease names in the reviews. Several publicly available resources were used to exclude comments containing known indications and adverse drug effects. After manually reviewing some of the remaining comments, we implemented a rule-based system to identify beneficial effects. RESULTS: The dictionary-based system and machine learning system identified 2178 and 6171 disease names respectively in 64,616 patient comments. We provided a list of 10 common patterns that patients used to report any beneficial effects or uses of medication. After manually reviewing the comments tagged by our rule-based system, we identified five potential drug repurposing candidates. CONCLUSIONS: To our knowledge, this is the first study to consider using social media data to identify drug-repurposing candidates. We found that even a rule-based system, with a limited number of rules, could identify beneficial effect mentions in patient comments. Our preliminary study shows that social media has the potential to be used in drug repurposing.

Social support and responsiveness in online patient communities: impact on service quality perceptions.

BACKGROUND: Hospitals frequently evaluate their service quality based on the care and services provided to patients by their clinical and non-clinical staff.(1,2) However, such evaluations do not take into consideration the many interactions that patients have in online patient communities with the health-care organization (HCO) as well as with peer patients. Patients' interactions in these online communities could impact their perceptions regarding the HCO's service quality. PURPOSES: The objective of this pilot study was to evaluate the impact of social support and responsiveness that patients experience in an HCO's online community on patients' perceptions regarding the HCO's service quality. METHOD: The study data are collected from CHESS, a health-care programme (Comprehensive Health Enhancement Support System) run by the Centre for Health Enhancement System Studies at the University of Wisconsin-Madison. FINDINGS: Findings show that the social support and the responsiveness received from peer patients in the online patient communities will impact patients' perceptions regarding the service quality of the HCO even when the organizational members themselves do not participate in the online discussions. PRACTICE IMPLICATIONS: The results indicate that interactions in such HCO-provided online patient communities should not be ignored as they could translate into patients' perceptions regarding HCOs' service quality. Ways to improve responsiveness and social support in an HCO's online patient community are discussed.

Feasibility, benefits and challenges of using telemonitoring for the aging with Developmental Disabilities (DD): An exploratory study.

Telemonitoring is being increasingly used to provide services to patients with developmental disabilities in residential community settings. The objective of this study is to assess the feasibility, benefits and challenges of using telemonitoring for aging patients with developmental disabilities. We also assess the benefits and challenges of telemonitoring for the caregivers of these patients. Focus groups and questionnaire-based surveys were used to collect data from patients and caregivers. The study found that telemonitoring was feasible and beneficial for the aging with developmental disabilities, albeit for those who are moderate to high functioning. It was not beneficial or feasible for those with very low functional capabilities. The study found that telemonitoring was beneficial towards providing more independence, more self-confidence in carrying out daily activities, and more knowledge regarding their disease. The study also found that telemonitoring was useful for caregivers to better understand their patients and their needs, better coordinate the services delivered, and to enhance the satisfaction of caregiving. The discussions include limitations of using quantitative methods in this type of setting.

Understanding electronic medical record adoption in the United States: communication and sociocultural perspectives.

BACKGROUND: This paper adopts a communication and sociocultural perspective to analyze the factors behind the lag in electronic medical record (EMR) adoption in the United States. Much of the extant research on this topic has emphasized economic factors, particularly, lack of economic incentives, as the primary cause of the delay in EMR adoption. This prompted the Health Information Technology on Economic and Clinical Health Act that allow financial incentives through the Centers of Medicare and Medicaid Services for many health care organizations planning to adopt EMR. However, financial incentives alone have not solved the problem; many new innovations do not diffuse even when offered for free. Thus, this paper underlines the need to consider communication and sociocultural factors to develop a better understanding of the impediments of EMR adoption. OBJECTIVE: The objective of this paper was to develop a holistic understanding of EMR adoption by identifying and analyzing the impact of communication and sociocultural factors that operate at 3 levels: macro (environmental), meso (organizational), and micro (individual). METHODS: We use the systems approach to focus on the 3 levels (macro, meso, and micro) and developed propositions at each level drawing on the communication and sociocultural perspectives. RESULTS: Our analysis resulted in 10 propositions that connect communication and sociocultural aspects with EMR adoption. CONCLUSIONS: This paper brings perspectives from the social sciences that have largely been missing in the extant literature of health information technology (HIT) adoption. In doing so, it implies how communication and sociocultural factors may complement (and in some instances, reinforce) the impact of economic factors on HIT adoption.

Information seeking and social support in online health communities: impact on patients' perceived empathy.

OBJECTIVE: Many healthcare organizations (HCOs) including Kaiser Permanente, Johns Hopkins, Cleveland Medical Center, and MD Anderson Cancer Center, provide access to online health communities as part of their overall patient support services. The key objective in establishing and running these online health communities is to offer empathic support to patients. Patients' perceived empathy is considered to be critical in patient recovery, specifically, by enhancing patient's compliance with treatment protocols and the pace of healing. Most online health communities are characterized by two main functions: informational support and social support. This study examines the relative impact of these two distinct functions-that is, as an information seeking forum and as a social support forum-on patients' perceived empathy in online health communities. DESIGN: This study tests the impact of two variables that reflect the above functions of online health communities-information seeking effectiveness and perceived social support-on perceived empathy. The model also incorporates the potential moderating effect of homophily on these relationships. MEASUREMENTS: A web-based survey was used to collect data from members of the online health communities provided by three major healthcare centers. A regression technique was used to analyze the data to test the hypotheses. RESULTS: The study finds that it is the information seeking effectiveness rather than the social support which affects patient's perceived empathy in online health communities run by HCOs. The results indicate that HCOs that provide online health communities for their patients need to focus more on developing tools that will make information seeking more effective and efficient.

Evaluating patient experience in online health communities: implications for health care organizations.

BACKGROUND: Online communities that focus on health-related matters have rapidly increased in number in the last several years or so. The increasing demand from health consumers for such forums have led several leading health care organizations (HCOs), including Kaiser Permanente and Johns Hopkins, to establish online communities/discussion forums as part of their patient-support services. Patients' interactions in such HCO-led online health communities potentially add another important dimension to the overall patient experience. However, there has been limited research focus on measuring or evaluating patients' experience in such online health communities. PURPOSES: The objective of this study was to evaluate patients' online community experience (OCE) and examine its impact on patients' attitude toward the HCO and its services. METHOD: The data collection was conducted using an online questionnaire sent to consumers/patients who participated in the online health communities of three large academic medical centers: the Johns Hopkins Pathology discussion board, run by the pathology department at Johns Hopkins University; the MD Anderson Cancer survivor board, run by MD Anderson Cancer Center at the University of Texas; and the Joslin Discussion Board, run by Joslin Diabetes Center affiliated with Harvard Medical School. Confirmatory factor analysis was done to validate the four dimensions of OCE. Linear regression technique was used to validate the impact of OCE on patient attitudes. FINDINGS: The results provide support for four dimensions of patients' OCE: pragmatic, empathic, sociability, and usability. Furthermore, all these four dimensions of OCE had a positive impact on patient's attitudes toward the HCO and its services. PRACTICE IMPLICATIONS: An understanding of the four dimensions of patient experience in online health communities and its implications on patient attitudes could help HCOs to design, deploy, and manage such online health communities more effectively.

Online public health preparedness training programs: an evaluation of user experience with the technological environment.

OBJECTIVES: Several public health education programs and government agencies across the country have started offering virtual or online training programs in emergency preparedness for people who are likely to be involved in managing or responding to different types of emergency situations such as natural disasters, epidemics, bioterrorism, etc. While such online training programs are more convenient and cost-effective than traditional classroom-based programs, their success depends to a great extent on the underlying technological environment. Specifically, in an online technological environment, different types of user experiences come in to play-users' utilitarian or pragmatic experience, their fun or hedonic experience, their social experience, and most importantly, their usability experience-and these different user experiences critically shape the program outcomes, including course completion rates. This study adopts a multi-disciplinary approach and draws on theories in human computer interaction, distance learning theories, usability research, and online consumer behavior to evaluate users' experience with the technological environment of an online emergency preparedness training program and discusses its implications for the design of effective online training programs. . METHODS: Data was collected using a questionnaire from 377 subjects who had registered for and participated in online public health preparedness training courses offered by a large public university in the Northeast. RESULTS: Analysis of the data indicates that as predicted, participants had higher levels of pragmatic and usability experiences compared to their hedonic and sociability experiences. Results also indicate that people who experienced higher levels of pragmatic, hedonic, sociability and usability experiences were more likely to complete the course(s) they registered for compared to those who reported lower levels. DISCUSSION: The study findings hold important implications for the design of effective online emergency preparedness training targeted at diverse audiences including the general public, health care and public health professionals, and emergency responders. Strategies for improving participants' pragmatic, hedonic, sociability and usability experiences are outlined. CONCLUSION: There are ample opportunities to improve the pragmatic, hedonic, sociability and usability experiences of the target audience. This is critical to improve the participants' learning and retention as well as the completion rates for the courses offered. Online emergency preparedness programs are likely to play a crucial role in preparing emergency responders at all levels in the future and their success has critical implications for public health informatics.

Models of consumer value cocreation in health care.

BACKGROUND: In recent years, consumer participation in health care has gained critical importance as health care organizations (HCOs) seek varied avenues to enhance the quality and the value of their offerings. Many large HCOs have established online health communities where health care consumers (patients) can interact with one another to share knowledge and offer emotional support in disease management and care. Importantly, the focus of consumer participation in health care has moved beyond such personal health care management as the potential for consumers to participate in innovation and value creation in varied areas of the health care industry becomes increasingly evident. Realizing such potential, however, will require HCOs to develop a better understanding of the varied types of consumer value cocreation that are enabled by new information and communication technologies such as online health communities and Web 2.0 (social media) technologies. PURPOSES: This article seeks to contribute toward such an understanding by offering a concise and coherent theoretical framework to analyze consumer value cocreation in health care. We identify four alternate models of consumer value cocreation-the partnership model, the open-source model, the support-group model, and the diffusion model-and discuss their implications for HCOs. METHOD: We develop our theoretical framework by drawing on theories and concepts in knowledge creation, innovation management, and online communities. A set of propositions are developed by combining theoretical insights from these areas with real-world examples of consumer value cocreation in health care. FINDINGS: The theoretical framework offered here informs on the potential impact of the different models of consumer value cocreation on important organizational variables such as innovation cost and time, service quality, and consumer perceptions of HCO. PRACTICE IMPLICATIONS: An understanding of the four models of consumer value cocreation can help HCOs adopt appropriate strategies and practices to embrace consumers as partners in the development and delivery of innovative health care products and services.