Usefulness and Usability of a Personal Health Record and Survivorship Care Plan for Colorectal Cancer Survivors: Survey Study

Background: As a result of improvements in cancer screening, treatment, and supportive care, nearly two-thirds of individuals diagnosed with colorectal cancer (CRC) live for 5 years after diagnosis. An ever-increasing population of CRC survivors creates a need for effective survivorship care to help manage and mitigate the impact of CRC and its treatment. Personal health records (PHRs) and survivorship care plans provide a means of supporting the long-term care of cancer survivors. Objective: The purpose of this study is to characterize the usefulness of a CRC PHR and survivorship care plan and to describe the usability of these technologies in a population of CRC survivors. To our knowledge, this is the first study to assess a PHR and survivorship care plan specifically targeting CRC survivors. Methods: Twenty-two patients with CRC were recruited from surgery clinics of an academic medical center and Veterans Affairs hospital in Indianapolis and provided access to an online Colorectal Cancer Survivor’s Personal Health Record (CRCS-PHR). Survey data were collected to characterize the usefulness of the CRCS-PHR and describe its usability in a population of CRC survivors. CRC survivors were surveyed 6 months after being provided online access. Means and proportions were used to describe the usefulness and ease of using the CRC website. Open-ended questions were qualitatively coded using the constant comparative method. Results: CRC survivors perceived features related to their health care (ie, summary of cancer treatment history, follow-up care schedule, description of side effects, and list of community resources) to be more useful than communication features (ie, creating online relationships with family members or caregivers, communicating with doctor, and secure messages). CRC survivors typically described utilizing traditional channels (eg, via telephone or in person) to communicate with their health care provider. Participants had overall positive perceptions with respect to ease of use and overall satisfaction. Major challenges experienced by participants included barriers to system log-in, lack of computer literacy or experience, and difficulty entering their patient information. Conclusions: For CRC, survivors may find the greater value in a PHR’s medical content than the communication functions, which they have available elsewhere. These findings regarding the usefulness and usability of a PHR for the management of CRC survivorship provide valuable insights into how best to tailor these technologies to patients’ needs. These findings can inform future design and development of PHRs for purposes of both cancer and chronic disease management

Examining the Impact of Design Features of Electronic Health Records Patient Portals on the Usability and Information Communication for Shared Decision Making

The use of the Electronic Health Records (EHR) patient portal has been shown to be effective in generating positive outcomes in patients’ healthcare, improving patient engagement and patient-provider communication. Government legislation also required proof of its meaningful use among patients by healthcare providers. Typical patient portals also include features such as health information and patient education materials. However, little research has examined the specific use of patient portals related to individuals with specific diseases such as inflammatory bowel diseases (IBDs). IBDs are life-long, not curable, chronic diseases that can impact the whole population. Individuals with IBDs may have higher needs to acquire health information from their EHR portals to properly self-manage their health conditions. The research aims of the present dissertation are to understand the online health information-seeking behaviors of a target group (IBDs) of patients, the use of EHR patient portals, and the impact of design features of EHR patient portals on the usability and information communication for shared decision making. Through this dissertation, I conducted four studies to address the above research aims. First, I identified how individuals with inflammatory bowel disease (IBD) used the internet for health information seeking, the factors impacting their use of the internet to obtain health information, and how they used the internet for health-related tasks. The purpose of this study is to get a general understanding of the online health information-seeking behaviors and to guide the study of health information presentation of EHR portals in the following research. Second, I examined what factors influenced an EHR patient portal user to believe that the portal is a valuable part of their health care. This part of the dissertation aimed to reveal the critical design factors that help design an EHR portal perceived as valuable in managing health. Third, I looked at how patients used EHR patient portals, what features of the portals facilitated their use and encouraged Shared Decision Making (SDM) and engagement in health management and what features acted as barriers to SDM and their engagement in health management. This part of my dissertation focused on a broad understanding of EHR portals usage by introducing more specific factors such as features of EHR portals. Fourth, I conducted an eye-tracking study to examine how information presentation methods and chatbots impact the use and effect of patient portals. This part of my dissertation built on the other studies within my dissertation and deepened the understanding of the influence of different EHR portal designs on their effectiveness and people’s willingness to participate in SDM. The results of this dissertation contribute to the literature of understanding the information-seeking behaviors of IBD patients and the use of portals, as well as the design considerations of how to make a suitable EHR portal to support the information-seeking needs of IBD patients. The results of this dissertation can be used to guide building proper patient education materials to support their health information needs of their specific health condition, especially for individuals with chronic diseases that require a certain amount of self-management. Meanwhile, examining artificial intelligence (AI) based chatbots use in EHR portals reveals a potential path of AI use in healthcare, such as information acquisition and patient education. Designing good usable EHR may also facilitate the process of informing patients of the advantages and disadvantages of treatment plans for their disease and, therefore, may increase their willingness to participate in SDM

Improving the patient experience through patient portals: Insights from experienced portal users

Background: Patient portals have become part of the ecosystem of care as both patients and providers use them for a range of activities both individually and collaboratively. As patients and providers gain greater experience using portals, their use and needs related to portals may evolve. Objective: This study aimed to learn from experienced patient portal users to improve our understanding of their perspectives on portal use for collaboration and engagement as well as explore how using a portal influenced their experiences with primary care providers. Methods: Qualitative study involving 29 semi-structured interviews with family medicine patients from a large Academic Medical Center (AMC). Interviewees were patients with chronic conditions who had been identified by their providers as experienced portal users. Interview transcripts were analyzed using rigorous qualitative methods. Results: Common themes emerged around both logistical and psychological benefits of portal use. Logistical benefits included increased efficiency, improved ability to track their health information, and better documentation of communications and information during and between office visits. Psychological benefits were a greater sense of collaboration in care, increased trust in providers, and enhanced engagement in health care activities. Conclusion: Experienced portal users discussed ways in which patient portals improved both their ability to manage their care and their relationships with providers. Frequent users described a sense of collaboration with their providers and greater trust in the relationship. These findings suggest that portal use may be a mechanism through which patients can increase patient engagement and improve the patient experience

Can caregivers trust information technology in the care of their patients? A systematic review

The Health Insurance Portability and Accountability Act of 1996 (HIPAA) requires that healthcare providers allow patients to engage in their healthcare by allowing access to their health records. Often patients need informal caregivers including family members or others to help them with their care. This paper explores whether trust is a key factor for informal caregivers’ decision to use health information technologies (HIT) including electronic health records (EHR), patient portals, mobile apps, or other devices to care for their patient. Six reviewers conducted a comprehensive search of four literature databases using terms that pertained to a caregiver and trust to investigate the role trust plays when caregivers use HIT. While trust is a key factor for the use of HIT, it the researchers only identified ten articles that met the research question thresholds. Four main topics of trust surfaced including perceived confidentiality, perceived security, technological malfunction, and trustworthiness of the information. Trust is a critical factor for informal caregivers when using HIT to assist in the care of their patient (child, loved one, parent, or acquaintance). Based on the findings, it is clear that more research on the use of HIT by caregivers is needed

Telemedicine and mHealth interventions for children and young people with type one diabetes (T1DM)

Open access journa

Introduction of a Medical Patient Portal to the Uninsured Patient

abstract: Purpose: The purpose of this evidence-based practice project was to improve participation by increasing registration on to a medical patient portal to an uninsured population. Medical patient portals have the potential to provide patients with timely, transparent access to health care information and engage them in their health care process and management. This may result in improved disease management outcomes. Methods: This project was guided by a The Rosswurm and Larrabee Model for Change to Evidence- Based Practice and Pender’s health promotion framework. IRB Approved by ASU. The instruction was implemented at an urban clinic in downtown phoenix that serves uninsured and underserved individuals. Uninsured participants were recruited (n=50). A survey pre and post registration was conducted to assess knowledge and medical portal participation in addition a random pre and post chart review was performed. Results: Descriptive statistics was used to describe sample and outcome variables. A chi-square test of independence was calculated comparing pre and post intervention significant change was found (χ2 (1) = .002, P<0.05.), a paired sample t test was calculated to compare knowledge pre and post registration instruction the mean pre-10.187(SD = 4.422), post mean was 16.958(SD=.856). A significant increase of knowledge was found (t (47) =-9.573, p (<.001). Outcomes: In this population both patients and providers have seen significant benefits such as increased communication and patient participation, from the implementation of evidence based educational tools such as instruction with teach back, and the usage of brochures. Potential Implication for sustainability includes the lack of a designated individual that is bilingual to register patients, making patients aware of the existence of a medical patient portal, patient’s fear of sharing immigration status

Feasibility of an interactive patient portal in oncology : qualitative study

Background: Digital health interventions, such as the use of patient portals, have been shown to offer benefits to a range of patients including those with a diagnosis of cancer. Objective: This study aimed to explore the participant experience and perception of using an interactive Web-based portal for monitoring physical activity, remote symptom reporting, and delivering educational components. Methods: Participants who were currently under treatment or had recently completed intensive treatment for cancer were recruited to three cohorts and invited to join a Web-based portal to enhance their physical activity. Cohort 1 received Web portal access and an activity monitor; cohort 2 had additional summative messaging; and cohort 3 had additional personalized health coaching messaging. Following the 10-week intervention, participants were invited to participate in a semistructured interview. Interview recordings were transcribed and evaluated using qualitative thematic analysis. Results: A total of 17 semistructured interviews were carried out. Participants indicated that using the Web portal was feasible. Personalized messaging improved participant perceptions of the value of the intervention. There was a contrast between cohorts and levels of engagement with increasing health professional contact leading to an increase in engagement. Educational material needs to be tailored to the participants’ cancer treatment status, health literacy, and background. Conclusions: Participants reported an overall positive experience using the Web portal and that personalized messaging positively impacted on their health behaviors. Future studies should focus more on design of interventions, ensuring appropriate tailoring of information and personalization of behavioral support messaging

Patient Engagement: The Impact of Electronic Patient Portal Use on Missed Appointments in Patients with Diabetes, a Retrospective Study

Background: This retrospective observational chart review evaluated the use of the MyChart® patient portal as a viable tool for engaging patients. Engagement was measured as fewer missed appointments (no-shows and same-day cancellations). Objectives: To determine who uses the MyChart® patient portal in a chronically ill population of adult patients with diabetes and assess the association of portal use with missed appointments. Methods: The medical records of adult patients (18-80) with a diagnosis of Type 1 and/or Type 2 Diabetes Mellitus (DM) were reviewed (N=7,795). The efficacy of the MyChart® patient portal at reducing missed appointments was assessed by comparing patients who use the portal (evidenced by two or more log-ins during the study period) to those who do not. Results: In this study, 43.7% of adult patients with diabetes used a portal account. Portal users were predominantly female, non-Black, married, non-smokers, and had at least one of the comorbidities often associated with diabetes (hypertension, hyperlipidemia, and/or obesity). Portal users were on average 58.8 years old. Use of the MyChart® patient portal was independently associated with a reduced no-show rate (4.7% for portal users compared to 12.4% for nonusers). However, when patients who activated a portal account during the study period were subjected to a within-subjects analysis, the mean missed appointment percentage was not statistically significantly different when patients had an activated portal account compared to when they did not. Thus, the portal may be a useful tool for engaging chronically ill patients but it is only one component to appointment arrivals. Conclusion: Conclusions from this study are limited given the retrospective design. Nonetheless, the findings suggest that the patient portal is effective at engaging chronically ill patients and thus warrants greater merit. The portal may also be a useful tool for reducing missed appointments in patients with chronic illness who would greatly benefit from appointment adherence. Future research should focus on testing the hypotheses generated in a prospective manner

The impact of digital patient portals on health outcomes, system efficiency, and patient attitudes: Updated systematic literature review

Background: Patient portals are becoming increasingly popular worldwide even though their impact on individual health and health system efficiency is still unclear. Objective: The aim of this systematic review was to summarize evidence on the impact of patient portals on health outcomes and health care efficiency, and to examine user characteristics, attitudes, and satisfaction. Methods: We searched the PubMed and Web of Science databases for articles published from January 1, 2013, to October 31, 2019. Eligible studies were primary studies reporting on the impact of patient portal adoption in relation to health outcomes, health care efficiency, and patient attitudes and satisfaction. We excluded studies where portals were not accessible for patients and pilot studies, with the exception of articles evaluating patient attitudes. Results: Overall, 3456 records were screened, and 47 articles were included. Among them, 11 studies addressed health outcomes reporting positive results, such as better monitoring of health status, improved patient-doctor interaction, and improved quality of care. Fifteen studies evaluated the impact of digital patient portals on the utilization of health services with mixed results. Patient characteristics were described in 32 studies, and it was reported that the utilization rate usually increases with age and female gender. Finally, 30 studies described attitudes and defined the main barriers (concerns about privacy and data security, and lack of time) and facilitators (access to clinical data and laboratory results) to the use of a portal. Conclusions: Evidence regarding health outcomes is generally favorable, and patient portals have the potential to enhance the doctor-patient relationship, improve health status awareness, and increase adherence to therapy. It is still unclear whether the use of patient portals improves health service utilization and efficiency