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

<p>Abstract</p> <p>Background</p> <p>Access 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.</p> <p>Methods</p> <p>A survey was conducted of Chief Executive Officers (CEOs) of Canadian public and acute care hospitals.</p> <p>Results</p> <p>Two 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.</p> <p>Conclusion</p> <p>As 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.</p

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

<p>Abstract</p> <p>Background</p> <p>Personal 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.</p> <p>Methods</p> <p>A 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.</p> <p>Results</p> <p>A 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.</p> <p>Conclusions</p> <p>Participants 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.</p

Layperson Perceptions and Attitudes Towards a National Electronic Health Record Introduction in Saudi Arabia

Introduction: Since patients and the general public may interact with a national electronic health record (EHR), including them during implementation of an EHR is important. Such acceptance has been documented as one of the critical areas in the development of a national EHR. However, only a few studies have considered public perceptions and attitudes regarding use of their health information in a universal EHR. This is the first study that concentrated on Saudi patients and citizens’ attitudes regarding a national EHR. . Objectives: The purpose of this quantitative study was to understand perceptions and attitudes regarding the introduction of a national EHR among the Saudi citizenry. Methodology: This study used a cross-sectional survey, which was designed based on a literature review and interviews with a small subset of the target population. The final survey was distributed by hand as well as through the internet. Analysis: The data was analyzed by conducting descriptive, bivariate and logistic regression tests. Results: Most of the Saudi citizens supported the development of a national EHR system, which might be used for several services, such as healthcare, health services planning and health research. Twelve percent of respondents reported being undecided in their view and only 2% of them would be opposed to such a system. In terms of accessing health records in a national EHR, most were in favor of accessing their complete record. The study results also highlighted that more than 70% of respondents would be concerned about the security of their health record if it were to become part of a national EHR. The results also revealed significant differences in levels of support depending on sociodemographic characteristics. Working in health related jobs and level of education were important factors related to level of support for the development of a national EHR. Furthermore, it indicated that there is no significant relationship between preferences for access to a national EHR and demographic, education and health related characteristics. Conclusion: These findings support the need for expediting the incorporation of health information technology, especially an EHR in healthcare organizations in Saudi Arabia. Making a national EHR as an optimal goal before adoption of a local EHR in each healthcare institution will help to facilitate the complex implementation. Findings of this study can be generalized and extrapolated to other societies that have similar cultural factors. Furthermore, the results potentially benefit the policy makers in Saudi Arabia

Clinical foundations and information architecture for the implementation of a federated health record service

Clinical care increasingly requires healthcare professionals to access patient record information that may be distributed across multiple sites, held in a variety of paper and electronic formats, and represented as mixtures of narrative, structured, coded and multi-media entries. A longitudinal person-centred electronic health record (EHR) is a much-anticipated solution to this problem, but its realisation is proving to be a long and complex journey. This Thesis explores the history and evolution of clinical information systems, and establishes a set of clinical and ethico-legal requirements for a generic EHR server. A federation approach (FHR) to harmonising distributed heterogeneous electronic clinical databases is advocated as the basis for meeting these requirements. A set of information models and middleware services, needed to implement a Federated Health Record server, are then described, thereby supporting access by clinical applications to a distributed set of feeder systems holding patient record information. The overall information architecture thus defined provides a generic means of combining such feeder system data to create a virtual electronic health record. Active collaboration in a wide range of clinical contexts, across the whole of Europe, has been central to the evolution of the approach taken. A federated health record server based on this architecture has been implemented by the author and colleagues and deployed in a live clinical environment in the Department of Cardiovascular Medicine at the Whittington Hospital in North London. This implementation experience has fed back into the conceptual development of the approach and has provided "proof-of-concept" verification of its completeness and practical utility. This research has benefited from collaboration with a wide range of healthcare sites, informatics organisations and industry across Europe though several EU Health Telematics projects: GEHR, Synapses, EHCR-SupA, SynEx, Medicate and 6WINIT. The information models published here have been placed in the public domain and have substantially contributed to two generations of CEN health informatics standards, including CEN TC/251 ENV 13606

ELIJAH: Electronic Linkage for Inflammatory bowel disease to deliver Joint Access to Health-reports

Aims The aim of my research was to evaluate a novel way to empower patients with inflammatory bowel disease by giving them access to personalised information about their condition and management. I also reviewed the literature relating to personal health records and have reflected on my experience of conducting research from my perspective as a nurse practitioner. Methods We took a pragmatic mixed methods approach to the study. We convened a local focus group and employed a summative analysis technique to explore the topic. Based on the outcomes of the focus group we developed an intervention (ELIJAH) that extended the local IBD electronic health record to enable the creation of individualised IBD health reports that were educationally enriched. We tested this intervention in a pragmatic randomised controlled feasibility study with 61 patients from one District General Hospital in South Wales. From the learning and recommended modifications of the feasibility study we drew up a protocol for a fully powered phase III trial of the intervention. Results The focus group showed that patients wanted more access to their IBD health records and individualised education about their disease. The randomised controlled feasibility study of the ELIJAH intervention showed that the intervention met the clinical and feasibility criteria, and the intervention with modifications could be progressed for a fully powered phase III trial. Conclusion The ELIJAH intervention is wanted by patients and is feasible to produce and test

An investigation of hospital patients' willingness and ability to participate in safety-related aspects of their healthcare management

Over the years the NHS has made great strides towards engaging patients in their healthcare management. In more recent years, the way in which patients could help to improve patient safety by reducing/preventing rates of medical errors has been highlighted. However, despite growing recognition of the valuable role of the patient in improving patient safety, very little is known about patients’ preferences for taking on an active role. This thesis aims to address the current gap in the evidence base with specific reference to a hospital inpatient cohort. Review work and a series of empirical investigations were undertaken which examined patients’ willingness and ability to participate in a range of safety-related behaviours. In total, empirical data was collected from 580 medical and surgical inpatients, using quantitative and mixed-method approach methodologies. A number of conclusions can be drawn from the research. Patients were more willing to engage in long standing safety recommendations than those practices which are newer or unfamiliar to the patient. Patients were particularly reticent to engage in those behaviours that they perceive as challenging the clinical abilities of healthcare staff. Several strategies appeared to be effective for encouraging patients to participate in safety-related behaviours: namely, patient-focussed leaflets or videos, or by patients being given encouragement from the doctors or nurses involved in the patient’s care. Overall the work in this thesis strongly suggests that while there is much to gain from involving patients in safety-related aspects of their healthcare management, patients need to be educated about how to be involved and where they can access safety-related information resources. In addition, doctors and nurses can have a pivotal role in encouraging patient involvement. Thus, it is paramount that both patients and healthcare professionals support patient participation in this area and healthcare professionals actively encourage the involvement of the patient