Kevin J. Leonard

Patient-Perceived Usefulness of Online Electronic Medical Records: Employing Grounded Theory in the Development of Information and Communication Technologies for Use by Patients Living with Chronic Illness

OBJECTIVE Patient use of online electronic medical records (EMR) holds the potential to improve health outcomes. The purpose of this study is to discover how patients living with chronic inflammatory bowel disease (IBD) value Internet-based patient access to electronic patient records. DESIGN This was a qualitative, exploratory, descriptive study using in-depth interviews and focus groups of a total of 12 patients with IBD of at least one-year duration at University Health Network, a tertiary care center in Toronto, Ontario. RESULTS Four themes have been elucidated that comprise a theoretical framework of patient-perceived information and communication technology usefulness: promotion of a sense of illness ownership, of patient-driven communication, of personalized support, and of mutual trust. CONCLUSIONS For patients with chronic IBD, simply providing access to electronic medical records has little usefulness on its own. Useful technology for patients with IBD is multifaceted, self-care promoting, and integrated into the patients already existing health and psychosocial support infrastructure. The four identified themes can serve as focal points for the evaluation of information technology designed for patient use, thus providing a patient-centered framework for developers seeking to adapt existing EMR systems to patient access and use for the purposes of improving health care quality and health outcomes. Further studies in other populations are needed to enhance generalizability of the emergent theory.

Mobile Phone-Based Telemonitoring for Heart Failure Management: A Randomized Controlled Trial

Background Previous trials of telemonitoring for heart failure management have reported inconsistent results, largely due to diverse intervention and study designs. Mobile phones are becoming ubiquitous and economical, but the feasibility and efficacy of a mobile phone-based telemonitoring system have not been determined. Objective The objective of this trial was to investigate the effects of a mobile phone-based telemonitoring system on heart failure management and outcomes. Methods One hundred patients were recruited from a heart function clinic and randomized into telemonitoring and control groups. The telemonitoring group (N = 50) took daily weight and blood pressure readings and weekly single-lead ECGs, and answered daily symptom questions on a mobile phone over 6 months. Readings were automatically transmitted wirelessly to the mobile phone and then to data servers. Instructions were sent to the patients’ mobile phones and alerts to a cardiologist’s mobile phone as required. Results Baseline questionnaires were completed and returned by 94 patients, and 84 patients returned post-study questionnaires. About 70% of telemonitoring patients completed at least 80% of their possible daily readings. The change in quality of life from baseline to post-study, as measured with the Minnesota Living with Heart Failure Questionnaire, was significantly greater for the telemonitoring group compared to the control group (P = .05). A between-group analysis also found greater post-study self-care maintenance (measured with the Self-Care of Heart Failure Index) for the telemonitoring group (P = .03). Brain natriuretic peptide (BNP) levels, self-care management, and left ventricular ejection fraction (LVEF) improved significantly for both groups from baseline to post-study, but did not show a between-group difference. However, a subgroup within-group analysis using the data from the 63 patients who had attended the heart function clinic for more than 6 months revealed the telemonitoring group had significant improvements from baseline to post-study in BNP (decreased by 150 pg/mL, P = .02), LVEF (increased by 7.4%, P = .005) and self-care maintenance (increased by 7 points, P = .05) and management (increased by 14 points, P = .03), while the control group did not. No differences were found between the telemonitoring and control groups in terms of hospitalization, mortality, or emergency department visits, but the trial was underpowered to detect differences in these metrics. Conclusions Our findings provide evidence of improved quality of life through improved self-care and clinical management from a mobile phone-based telemonitoring system. The use of the mobile phone-based system had high adherence and was feasible for patients, including the elderly and those with no experience with mobile phones. Trial Registration ClinicalTrials.gov NCT00778986

Patient-Perceived Barriers to the Adoption of Nocturnal Home Hemodialysis

BACKGROUND AND OBJECTIVES Nocturnal home hemodialysis (NHHD) has been shown to improve clinical outcomes, although adoption has been limited. Given the known benefits, an understanding of the barriers to adoption is needed. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS Patient-perceived barriers were studied through a cross-sectional survey of prevalent hemodialysis patients using validated instruments, study-specific questions, and ethnographic interviews. Fifty-six of 66 NHHD patients and 153 of 199 conventional hemodialysis (CHD) patients were included in the survey. Twenty interviews were conducted with NHHD, CHD, and predialysis patients. RESULTS Compared with CHD patients, NHHD patients had higher perceived physical health scores (Short Form 12 [SF-12]: 41.47 +/- 10.9 versus 34.73 +/- 10.6, P < 0.0001), but had similar mental health scores (47.30 +/- 11.1[NHHD] versus 45.27 +/- 11.3[CHD]), P = 0.25). Despite having similar measures of education and perceived social support as NHHD patients, CHD patients had a low interest (1.68 [out of 5] +/- 1.26) in adopting NHHD. The major barriers perceived by CHD patients were lack of self-efficacy in performing the therapy, lack of confidence in self-cannulation, and length of time on current therapy. Similar themes emerged from the qualitative analysis as well as: burden on family members and fear of a catastrophic event. CONCLUSIONS Patient-perceived barriers are primarily fears of self-cannulation, a catastrophic event, and the burden on family. These findings should form the basis of screening patients for interest in NHHD and serve to mitigate these concerns.

Is Canada ready for patient accessible electronic health records? A national scan

BackgroundAccess to personal health information through the electronic health record (EHR) is an innovative means to enable people to be active participants in their own health care. Currently this is not an available option for consumers of health. The absence of a key technology, the EHR, is a significant obstacle to providing patient accessible electronic records. To assess the readiness for the implementation and adoption of EHRs in Canada, a national scan was conducted to determine organizational readiness and willingness for patient accessible electronic records.MethodsA survey was conducted of Chief Executive Officers (CEOs) of Canadian public and acute care hospitals.ResultsTwo hundred thirteen emails were sent to CEOs of Canadian general and acute care hospitals, with a 39% response rate. Over half (54.2%) of hospitals had some sort of EHR, but few had a record that was predominately electronic. Financial resources were identified as the most important barrier to providing patients access to their EHR and there was a divergence in perceptions from healthcare providers and what they thought patients would want in terms of access to the EHR, with providers being less willing to provide access and patients desire for greater access to the full record.ConclusionAs the use of EHRs becomes more commonplace, organizations should explore the possibility of responding to patient needs for clinical information by providing access to their EHR. The best way to achieve this is still being debated.

Perceptions and experiences of heart failure patients and clinicians on the use of mobile phone-based telemonitoring.

Background Previous trials of heart failure telemonitoring systems have produced inconsistent findings, largely due to diverse interventions and study designs. Objectives The objectives of this study are (1) to provide in-depth insight into the effects of telemonitoring on self-care and clinical management, and (2) to determine the features that enable successful heart failure telemonitoring. Methods Semi-structured interviews were conducted with 22 heart failure patients attending a heart function clinic who had used a mobile phone-based telemonitoring system for 6 months. The telemonitoring system required the patients to take daily weight and blood pressure readings, weekly single-lead ECGs, and to answer daily symptom questions on a mobile phone. Instructions were sent to the patient’s mobile phone based on their physiological values. Alerts were also sent to a cardiologist’s mobile phone, as required. All clinicians involved in the study were also interviewed post-trial (N = 5). The interviews were recorded, transcribed, and then analyzed using a conventional content analysis approach. Results The telemonitoring system improved patient self-care by instructing the patients in real-time how to appropriately modify their lifestyle behaviors. Patients felt more aware of their heart failure condition, less anxiety, and more empowered. Many were willing to partially fund the use of the system. The clinicians were able to manage their patients’ heart failure conditions more effectively, because they had physiological data reported to them frequently to help in their decision-making (eg, for medication titration) and were alerted at the earliest sign of decompensation. Essential characteristics of the telemonitoring system that contributed to improved heart failure management included immediate self-care and clinical feedback (ie, teachable moments), how the system was easy and quick to use, and how the patients and clinicians perceived tangible benefits from telemonitoring. Some clinical concerns included ongoing costs of the telemonitoring system and increased clinical workload. A few patients did not want to be watched long-term while some were concerned they might become dependent on the system. Conclusions The success of a telemonitoring system is highly dependent on its features and design. The essential system characteristics identified in this study should be considered when developing telemonitoring solutions. Key Words

Self-care and quality of life of heart failure patients at a multidisciplinary heart function clinic.

Background:Multidisciplinary heart function clinics aim to improve self-care through patient education and to provide clinical management. Objective:The objectives of the present study were to investigate the self-care and quality of life of patients attending a multidisciplinary heart function clinic and to explore the relationship between self-care and quality of life. Methods:One hundred outpatients attending a multidisciplinary heart function clinic were asked to complete a questionnaire. The questionnaire included the Self-care of Heart Failure Index (SCHFI) and the Minnesota Living With Heart Failure Questionnaire, which were used to assess self-care behavior and quality of life, respectively. Self-care practices and perceived barriers were also assessed through semistructured interviews with each patient. Results:The returned questionnaires (n = 94) were used to compute the following SCHFI maintenance, management, and confidence scores: 60.8 (SD, 19.3), 62.0 (SD, 20.7), and 55.9 (SD, 19.7), respectively. Higher SCHFI scores indicate better self-care. None of the self-care dimensions reached the self-care adequacy cut point of 70. The average score on the Minnesota Living With Heart Failure Questionnaire was 49.9 (SD, 25.4), indicating a moderate health-related quality of life. Lower ejection fraction, older age, and better quality of life were associated with better self-care. Determinants of better quality of life were older age, better functional capacity, higher self-care confidence, and fewer comorbidities. The patient interviews revealed that better quality of life is associated with higher self-care confidence and barriers to self-care caused anxiety to the patients. The self-care barriers were found to include lack of self-care education, financial constraints, lack of perceived benefit, and low self-efficacy. Conclusions:Patients attending a large multidisciplinary Canadian heart failure clinic do not perform adequate self-care as measured with the SCHFI and report only a moderate quality of life. Increasing self-care through education and tools that target self-care barriers are required and may help improve quality of life.

Overcoming structural constraints to patient utilization of electronic medical records:: A critical review and proposal for an evaluation framework

There are constraints embedded in medical record structure that limit use by patients in self-directed disease management. Through systematic review of the literature from a critical perspective, four characteristics that either enhance or mitigate the influence of medical record structure on patient utilization of an electronic patient record (EPR) system have been identified: environmental pressures, physician centeredness, collaborative organizational culture, and patient centeredness. An evaluation framework is proposed for use when considering adaptation of existing EPR systems for online patient access. Exemplars of patient-accessible EPR systems from the literature are evaluated utilizing the framework. From this study, it appears that traditional information system research and development methods may not wholly capture many pertinent social issues that arise when expanding access of EPR systems to patients. Critically rooted methods such as action research can directly inform development strategies so that these systems may positively influence health outcomes.

Attitudes of heart failure patients and health care providers towards mobile phone-based remote monitoring.

Background Mobile phone-based remote patient monitoring systems have been proposed for heart failure management because they are relatively inexpensive and enable patients to be monitored anywhere. However, little is known about whether patients and their health care providers are willing and able to use this technology. Objective The objective of our study was to assess the attitudes of heart failure patients and their health care providers from a heart function clinic in a large urban teaching hospital toward the use of mobile phone-based remote monitoring. Methods A questionnaire regarding attitudes toward home monitoring and technology was administered to 100 heart failure patients (94/100 returned a completed questionnaire). Semi-structured interviews were also conducted with 20 heart failure patients and 16 clinicians to determine the perceived benefits and barriers to using mobile phone-based remote monitoring, as well as their willingness and ability to use the technology. Results The survey results indicated that the patients were very comfortable using mobile phones (mean rating 4.5, SD 0.6, on a five-point Likert scale), even more so than with using computers (mean 4.1, SD 1.1). The difference in comfort level between mobile phones and computers was statistically significant (P< .001). Patients were also confident in using mobile phones to view health information (mean 4.4, SD 0.9). Patients and clinicians were willing to use the system as long as several conditions were met, including providing a system that was easy to use with clear tangible benefits, maintaining good patient-provider communication, and not increasing clinical workload. Clinicians cited several barriers to implementation of such a system, including lack of remuneration for telephone interactions with patients and medicolegal implications. Conclusions Patients and clinicians want to use mobile phone-based remote monitoring and believe that they would be able to use the technology. However, they have several reservations, such as potential increased clinical workload, medicolegal issues, and difficulty of use for some patients due to lack of visual acuity or manual dexterity.

Developing healthcare rule-based expert systems: Case study of a heart failure telemonitoring system

BACKGROUND The use of expert systems to generate automated alerts and patient instructions based on telemonitoring data could enable increased self-care and improve clinical management. However, of great importance is the development of the rule set to ensure safe and clinically relevant alerts and instructions are sent. The purpose of this work was to develop a rule-based expert system for a heart failure mobile phone-based telemonitoring system, to evaluate the expert system, and to generalize the lessons learned from the development process for use in other healthcare applications. METHODS Semi-structured interviews were conducted with 10 heart failure clinicians to inform the development of a draft heart failure rule set for alerts and patient instructions. The draft rule set was validated and refined with 9 additional interviews with heart failure clinicians. Finally, the clinical champion of the project vetted the rule set. The concerns voiced by the clinicians during the interviews were noted, and methods to mitigate these concerns were employed. The rule set was then evaluated as part of a 6-month randomized controlled trial of a mobile phone-based heart failure telemonitoring system (n=50 for each of the telemonitoring and control groups). RESULTS The developed expert system generated alerts and instructions based on the patients weight, blood pressure, heart rate, and symptoms. During the trial, 1620 alerts were generated, which led to various clinical actions including 105 medication changes/instructions. The findings from the trial indicated the rule set was associated with improved quality of life and self-care. CONCLUSIONS A rule set was developed with extensive input by heart failure clinicians. The results from the trial indicated the rule set was associated with significantly increased self-care and improved the clinical management of heart failure. The developed rule set can be used as a basis for other heart failure telemonitoring systems, but should be validated and modified as necessary. In addition, the process used to develop the rule set can be generalized and applied to create robust and complete rule sets for other healthcare expert systems.

The anxious wait: assessing the impact of patient accessible EHRs for breast cancer patients

BackgroundPersonal health records (PHRs) provide patients with access to personal health information (PHI) and targeted education. The use of PHRs has the potential to improve a wide range of outcomes, including empowering patients to be more active participants in their care. There are a number of widespread barriers to adoption, including privacy and security considerations. In addition, there are clinical concerns that patients could become anxious or distressed when accessing complex medical information. This study assesses the implementation of a PHR, and its impact on anxiety levels and perceptions of self-efficacy in a sample of breast cancer patients.MethodsA quasi-experimental pre-test/post-test design was used to collect data from participants to evaluate the use of the PHR. Study participants completed background and pre-assessment questionnaires and were then registered into the portal. By entering an activation key, participants were then able to review their lab results and diagnostic imaging reports. After six weeks, participants completed post-assessment questionnaires and usability heuristics. All data were collected using an online survey tool. Data were cleaned and analyzed using SAS v9.1.ResultsA total of 311 breast cancer patients completed demographic and pre-assessment questionnaires, 250 registered to use the online intervention, and 125 participants completed all required study elements. Matching the pre- and post-anxiety scores demonstrated a decrease in mean anxiety scores (-2.2, p = 0.03); the chemotherapy sub-group had a statistically insignificant mean increase (1.8, p = .14). There was no mean change in self-efficacy scores.ConclusionsParticipants generally found the portal easy to use; however, the perceived value of improved participation was not detected in the self-efficacy scores. Having access to personal health information did not increase anxiety levels. While these results suggest that the use of this PHR may be of benefit for informing patients, further research is required to investigate the impact on the patients experiences, their participation in their care, their relationships with the health care team, and their health outcomes.