Understanding views on everyday use of personal health information: Insights from community dwelling older adults.

BACKGROUND: Older adults apply various strategies to pursue healthy aging, but we know little about their views and use of personal health information to accomplish those ends. METHODS: As a first step in formulating the role of personal health information management (PHIM) in healthy aging, we explored the perspectives of older adults on health and health information used in their everyday lives through four focus groups with 25 community-dwelling adults aged 60 and over. RESULTS: We found that the concept of wellness-the holistic and multidimensional nature of health and wellbeing-plays prominently in how older adults think about health and health information. Participants expressed wellness from a position of personal strength, rather than health-related deficits, by focusing on wellness activities for staying healthy through: (1) personal health practices, (2) social network support, and (3) residential community engagement. CONCLUSION: Although these themes involve personal health information, existing PHIM systems that focus on disease management are generally not designed to support wellness activities. Substantial opportunity exists to fill this wellness support gap with innovative health information technology designed for older adults. Findings carry implications for the design of PHIM tools that support healthy aging and methods for engaging older adults as co-producers of this critical support.

Consumer Health Informatics: Past, Present, and Future of a Rapidly Evolving Domain.

OBJECTIVES: Consumer Health Informatics (CHI) is a rapidly growing domain within the field of biomedical and health informatics. The objective of this paper is to reflect on the past twenty five years and showcase informatics concepts and applications that led to new models of care and patient empowerment, and to predict future trends and challenges for the next 25 years. METHODS: We discuss concepts and systems based on a review and analysis of published literature in the consumer health informatics domain in the last 25 years. RESULTS: The field was introduced with the vision that one day patients will be in charge of their own health care using informatics tools and systems. Scientific literature in the field originally focused on ways to assess the quality and validity of available printed health information, only to grow significantly to cover diverse areas such as online communities, social media, and shared decision-making. Concepts such as home telehealth, mHealth, and the quantified-self movement, tools to address transparency of health care organizations, and personal health records and portals provided significant milestones in the field. CONCLUSION: Consumers are able to actively participate in the decision-making process and to engage in health care processes and decisions. However, challenges such as health literacy and the digital divide have hindered us from maximizing the potential of CHI tools with a significant portion of underserved populations unable to access and utilize them. At the same time, at a global scale consumer tools can increase access to care for underserved populations in developing countries. The field continues to grow and emerging movements such as precision medicine and the sharing economy will introduce new opportunities and challenges.

Informatics Systems and Tools to Facilitate Patient-centered Care Coordination.

INTRODUCTION: There is a growing international focus on patient- centered care. A model designed to facilitate this type of care in the primary care setting is the patient-centered medical home. This model of care strives to be patient-focused, comprehensive, team-based, coordinated, accessible, and focused on quality and safety of care. OBJECTIVE: The objective of this paper is to identify the current status and future trends of patient-centered care and the role of informatics systems and tools in facilitating this model of care. METHODS: In this paper we review recent scientific literature of the past four years to identify trends and state of current evidence when it comes to patient-centered care overall, and more specifically medical homes. RESULTS: There are several studies that indicate growth and development in seven informatics areas within patient-centered care, namely clinical decision support, registries, team care, care transitions, personal health records, telehealth, and measurement. In some cases we are still lacking large randomized clinical trials and the evidence base is not always solid, but findings strongly indicate the potential of informatics to support patient-centered care. CONCLUSION: Current evidence indicates that advancements have been made in implementing and evaluating patient-centered care models. Technical, legal, and practical challenges still remain. Further examination of the impact of patient-centered informatics tools and systems on clinical outcomes is needed.

Assessing older adults' perceptions of sensor data and designing visual displays for ambient environments. An exploratory study.

INTRODUCTION: This article is part of the Focus Theme of Methods of Information in Medicine on "Using Data from Ambient Assisted Living and Smart Homes in Electronic Health Records". OBJECTIVES: Our objectives were to: 1) characterize older adult participants' perceived usefulness of in-home sensor data and 2) develop novel visual displays for sensor data from Ambient Assisted Living environments that can become part of electronic health records. METHODS: Semi-structured interviews were conducted with community-dwelling older adult participants during three and six-month visits. We engaged participants in two design iterations by soliciting feedback about display types and visual displays of simulated data related to a fall scenario. Interview transcripts were analyzed to identify themes related to perceived usefulness of sensor data. RESULTS: Thematic analysis identified three themes: perceived usefulness of sensor data for managing health; factors that affect perceived usefulness of sensor data and; perceived usefulness of visual displays. Visual displays were cited as potentially useful for family members and health care providers. Three novel visual displays were created based on interview results, design guidelines derived from prior AAL research, and principles of graphic design theory. CONCLUSIONS: Participants identified potential uses of personal activity data for monitoring health status and capturing early signs of illness. One area for future research is to determine how visual displays of AAL data might be utilized to connect family members and health care providers through shared understanding of activity levels versus a more simplified view of self-management. Connecting informal and formal caregiving networks may facilitate better communication between older adults, family members and health care providers for shared decision-making.

Health providers' perceptions of novel approaches to visualizing integrated health information.

OBJECTIVES: We evaluated the design of three novel visualization techniques for integrated health information with health care providers in older adult care. Through focus groups, we identified generalizable themes related to the visualization and interpretation of health information. Using these themes we address challenges with visualizing integrated health information and provide recommendations for designers. METHODS: We recruited ten health care providers to participate in three focus groups. We applied a qualitative descriptive approach to code and extract themes related to the visualization of graphical displays. RESULTS: We identified a set of four common themes across focus groups related to: 1) Trust in data for decision-making; 2) Perceived level of detail for visualization (subthemes: holistic, individual components); 3) Cognitive issues (subthemes: training and experience; cognitive overload; contrast); and 4) Application of visual displays. Furthermore, recommendations are provided as part of the iterative design process for the visualizations. CONCLUSIONS: Data visualization of health information is an important component of care, impacting both the accuracy and speed of decision making. There are both functional and cognitive elements to consider during the development of appropriate visualizations that integrate different components of health.

Mobilizing Older Adults: Harnessing the Potential of Smart Home Technologies. Contribution of the IMIA Working Group on Smart Homes and Ambient Assisted Living.

OBJECTIVES: This paper highlights the potential of smart home applications to not only assess mobility determinants for older adults in the home environment but also provide the opportunity for tailored interventions. METHODS: We present a theoretical framework for assessing mobility parameters and utilizing this information to enable behavior change based on the Health Belief Model. We discuss examples that showcase the potential of smart home systems to not only measure but also improve mobility for community dwelling older adults. RESULTS: Mobility is a complex construct that cannot be addressed with a single monitoring approach or a single intervention. Instead, tailored interventions that address specific needs and behaviors of individuals and take into consideration preferences of older adults and potentially their social network are needed to effectively enforce positive behavior change. Smart home systems have the ability to capture details of one's daily living that could otherwise not be easily obtained; however, such data repositories alone are not sufficient to improve clinical outcomes if appropriate mechanisms for data mining and analysis, as well as tailored response systems are not in place. CONCLUSIONS: Unleashing the potential of smart home applications to measure and improve mobility has the potential of transforming elder care and providing potentially cost-effective tools to support independence for older adults. A technologically driven smart home application can maximize its clinical relevance by pursuing interactive features that can lead to behavior change.

Smart homes and ambient assisted living applications: from data to knowledge-empowering or overwhelming older adults? Contribution of the IMIA Smart Homes and Ambiant Assisted Living Working Group.

OBJECTIVES: As health care systems face limited resources and workforce shortages to address the complex needs of older adult populations, innovative approaches utilizing information technology can support aging. Smart Home and Ambient Assisted Living (SHAAL) systems utilize advanced and ubiquitous technologies including sensors and other devices that are integrated in the residential infrastructure or wearable, to capture data describing activities of daily living and health related events. This paper highlights how data from SHAAL systems can lead to information and knowledge that ultimately improves clinical outcomes and quality of life for older adults as well as quality of health care services. METHODS: We conducted a review of personal health record applications specifically for older adults and approaches to using information to improve elder care. We present a framework that showcases how data captured from SHAAL systems can be processed to provide meaningful information that becomes part of a personal health record. RESULTS: Synthesis and visualization of information resulting from SHAAL systems can lead to knowledge and support education, delivery of tailored interventions and if needed, transitions in care. Such actions can involve multiple stakeholders as part of shared decision making. CONCLUSION: SHAAL systems have the potential to support aging and improve quality of life and decision making for older adults and their families. The framework presented in this paper demonstrates how emphasis needs to be placed into extracting meaningful information from new innovative systems that will support decision making. The challenge for informatics designers and researchers is to facilitate an evolution of SHAAL systems expanding beyond demonstration projects to actual interventions that will improve health care for older adults.

The use of videophones for patient and family participation in hospice interdisciplinary team meetings: a promising approach.

Inclusion of patients and caregivers in decisions related to the delivery of care is inherent in the hospice philosophy. Telemedicine technologies offer a potential solution to the challenges presented by the geographic distance between team meetings and the home environment. While inclusion requires additional coordination by the hospice team, it also offers an important opportunity to improve communication between the team and the patient and family. A modified conceptual model based on two previous frameworks is outlined to support patient and family involvement in hospice team meetings. Further research is suggested to determine the structural feasibility of patient and family involvement via videophone as well as the structural and procedural changes resulting from this inclusion. Finally, clinical outcomes and family evaluation of the inclusion experience need to be thoroughly researched before final conclusions may be reached.

'They're part of the team': participant evaluation of the ACTIVE intervention.

This study used participant feedback to qualitatively evaluate an intervention (Assessing Caregivers for Team Intervention through Videophone Encounters [ACTIVE]) that used videophone technology to include patients and/or their family caregivers in hospice interdisciplinary team meetings. Data were generated during individual interviews with hospice staff members and family caregivers who participated in ACTIVE intervention. Modified grounded theory procedures served as the primary analysis strategy. Results indicated that ACTIVE intervention enhanced team functioning in terms of context, structure, processes and outcomes. Participants discussed challenges and offered corresponding recommendations to make the intervention more efficient and effective. Data supported the ACTIVE intervention as a way for hospice providers to more fully realise their goal of maximum patient and family participation in care planning.

Learning is different on the Web: a theory-based course redesign effort.

There has been recent growth in professional clinical informatics education delivered via distance learning. In some instances the instructional design model is to simply port the classroom to the web. Given the unique capabilities and constraints inherent to distance learning, we elected to redesign our introductory informatics course building on a well-studied andragogical design model (AMIGO3) specifically designed for the distance learning environments.

Technologies for an aging society: a systematic review of "smart home" applications.

OBJECTIVES: A "smart home" is a residence wired with technology features that monitor the well-being and activities of their residents to improve overall quality of life, increase independence and prevent emergencies. This type of informatics applications targeting older adults, people with disabilities or the general population is increasingly becoming the focus of research worldwide. The aim of this study was to provide a comprehensive review of health related smart home projects and discuss human factors and other challenges. METHODS: To cover not only the medical but also the social sciences and electronics literature, we conducted extensive searches across disciplines (e.g., Medline, Embase, CINAHL, PsycINFO, Electronics and Communications Abstracts, Web of Science etc.). In order to be inclusive of all new initiatives and efforts in this area given the innovativeness of the concept, we manually searched for relevant references in the retrieved articles as well as published books on smart homes and gerontechnology. RESULTS: A total of 114 publications (including papers, abstracts and web pages) were identified and reviewed to identify the overarching projects. Twenty one smart home projects were identified (71% of the projects include technologies for functional monitoring, 67% for safety monitoring, 47% for physiological monitoring, 43% for cognitive support or sensory aids, 19% for monitoring security and 19% to increase social interaction). Evidence for their impact on clinical outcomes is lacking. CONCLUSIONS: The field of smart homes is a growing informatics domain. Several challenges including not only technical but also ethical ones need to be addressed.

Interdisciplinary innovations in biomedical and health informatics graduate education.

OBJECTIVES: Biomedical and health informatics (BHI) is a rapidly growing domain that relies on the active collaboration with diverse disciplines and professions. Educational initiatives in BHI need to prepare students with skills and competencies that will allow them to function within and even facilitate interdisciplinary teams (IDT). This paper describes an interdisciplinary educational approach introduced into a BHI graduate curriculum that aims to prepare informatics researchers to lead IDT research. METHODS: A case study of the "gerontechnology" research track is presented which highlights how the curriculum fosters collaboration with and understanding of the disciplines of Nursing, Engineering, Computer Science, and Health Administration. Gerontechnology is a new interdisciplinary field that focuses on the use of technology to support aging. Its aim is to explore innovative ways to use information technology and develop systems that support independency and increase quality of life for senior citizens. As a result of a large research group that explores "smart home" technologies and the use of information technology, we integrated this new domain into the curriculum providing a platform for computer scientists, engineers, nurses and physicians to explore challenges and opportunities with our informatics students and faculty. RESULTS: The interdisciplinary educational model provides an opportunity for health informatics students to acquire the skills for communication and collaboration with other disciplines. Numerous graduate and postgraduate students have already participated in this initiative. The evaluation model of this approach is presented. CONCLUSION: Interdisciplinary educational models are required for health informatics graduate education. Such models need to be innovative and reflect the needs and trends in the domains of health care and information technology.

Change of patients' perceptions of TeleHomeCare.

The study's objectives were to measure patients' perceptions of a telehomecare system before and after they have participated in it and identify the features of the system that patients perceived differently after experiencing it. The study setting was the TeleHomeCare Project, which uses videoconferencing and Internet equipment to enable interactions between patients and nurses. An instrument that measures perceptions of telehomecare was used. Patients viewed a videotape that demonstrates a "virtual home care visit" and filled out the questionnaire (pre-test). They were then randomly assigned to a control group receiving standard care or to an experimental group receiving videoconferencing and Internet access in addition to standard care. Both groups filled out the questionnaire when exiting the system (post-test). Paired t-tests were performed to compare total scores and responses to each of the items within the groups and an unpaired t-test was used to compare change of perceptions between groups. The control group consisted of 11 patients, and the experimental group included 17 patients. There was no statistically significant change of perception in the control group. The experimental group showed an overall more positive perception of the system after their experience (total score increase by 6.059, p < 0.0001), and the mean score difference was higher compared to the control group (mean 6.241, p < 0.0001). Elderly patients evaluated their telehomecare experience as being positive, and they felt more comfortable with the technology, believing that the nurse can understand their medical problem over the television. This suggests that telehomecare has the potential for wide acceptance among patients.

Considerations for the design of a Web-based clinical monitoring and educational system for elderly patients.

Designing a Web system for elderly patients requires attention to the users' functional impairments and inexperience with computers. The authors reviewed published guides for the design of Web-based clinical systems for elderly patients and identified additional design considerations that have not been reported in the literature. The resulting recommendations are related to the system interface, the training and support of users, and the content of Web pages. The recommendations can be used as design objectives for Web-based systems for elderly patients, which emphasize system usability and aim to optimize patients' error-free use of these systems.

The nature of communication in virtual home care visits.

The study's objective was to analyze "virtual" home care visits that utilize telemedicine technology and to investigate the type and quality of interaction between provider and patient. The setting was the TeleHomeCare Project which provides TV-based videoconferencing. Patients are receiving standard home care services with an addition of virtual visits. 122 virtual visits were reviewed and a content analysis was performed for 30 of these. Time was apportioned among the following categories of communication: assessing the patient's clinical status, promoting compliance, addressing psychosocial issues, general informal talk, education, administrative issues, technical issues, assessing patient satisfaction and ensuring accessibility. The findings indicate that technology does not interfere with but rather enriches the care process. Although there are activities that cannot be conducted in virtual visits, they can address most of the important aspects of care delivery giving strength to the argument that they could in some cases substitute traditional visits.

A questionnaire for the assessment of patients' impressions of the risks and benefits of home telecare.

Home telecare is a promising method of improving access to care for rural and urban populations. It requires, however, that patients accept the installation and use of equipment in their home. How patients perceive home telecare may influence its acceptability and diffusion. We developed a questionnaire to assess patients' impressions of the risks and benefits of home telecare. A preliminary 20-item questionnaire was developed and tested on 32 subjects. It proved to be of acceptable reliability (Cronbach's alpha of 0.8) and validity, but three items appeared to be redundant. The final 17-item version was tested twice on 10 more subjects and was found to have high test-retest reliability. Most subjects showed an overall positive attitude towards home telecare and agreed it could improve their health. Many were concerned about being able to trust the equipment. The questionnaire can be used to investigate the acceptance of telemedicine and to improve the design of applications.