Patients value access to both paper and electronic medical records. They report that access helps break down barriers between patients and doctors thereby improving consultations and their relationships with professional. They also feel better informed and a have a sense of control over their own health and health care and believe that record access provides the opportunity to be more involved in the recording of information that promotes a sense of illness ownership. Patients express some concerns about confidentiality particularly with regard to unauthorized access to health information. However, the advantages outweigh the disadvantages. Clinicians are also beginning to realize the value of improved communication with patients as a direct consequence of patient record access. As electronic patient records become more accessible, research is needed into how patients use the information they have accessed and the impact that record access has on health outcomes and relationships with clinicians.
A literature review on patients accessing their own records, carried out for NHS Connecting for Health. This will form part of a paper to be published in October 2006.
Prados-Suárez B et al, Expert Systems with Applications, 2012
This paper aims to solve a recently arose problem, related to the access to the Electronic Health Records (EHR) in the Hospitals. Due to the digitalization of the information contained in the medical records, and the growing availability of devices that directly generate digital documents to include in it, the EHR are becoming unmanageable. Even more, to find a concrete item of information relevant for a given assistance act is a very hard, difficult and time-consuming task. To solve it we propose here the definition of contexts of access to the EHR, to exploit the logical division of the information inside each document in the EHR into data groups, and the computation of the pertinence of each data group to each context.
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Ralston, James D. et al, J Am Med Inform Assoc, 14(6)
This study sought to describe the evolution, use, and user satisfaction of a patient Web site providing a shared medical record between patients and health professionals at Group Health Cooperative, a mixed-model health care financing and delivery organization based in Seattle, Washington.
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Thompson, Douglas et al, Journal of Healthcare Information Management, 21(3)
In the third stage of electronic medical record development, key features of EMR systems have converged, making them more difficult to differentiate from a cost/benefit standpoint. Fourth stage EMR systems are likely to introduce new, more effective decision support capabilities, offering a competitive advantage to hospitals that use them.
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“MRI’s Survey of Electronic Health Record Trends and Usage is an annual poll of IT usage among healthcare providers of various sizes.”
Medical Records Institute, 2006
“A presentation by NHS Connecting for Health National Clinical Leads”
Gillian Braunold and Simon Eccles, Inside CRDB – The Annual Conference of the Care Record Development Board, 2005
“One aspect of electronic care records which has received little attention is the potential benefit to clinical research. Electronic records could facilitate new interfaces between care and research environments, leading to great improvements in the scope and efficiency of research. Benefits range from systematically generating hypotheses for research to undertaking entire studies based only on electronic record data. Researchers and research managers must engage with electronic record initiatives to realize these benefits. Clinicians and patients must have confidence in the consent, confidentiality and security arrangements for the uses of secondary data. Provided that such initiatives establish adequate information governance arrangements, within a clear ethical framework, innovative clinical research should flourish. Major benefits to patient care could ensue given sufficient development of the care-research interface via electronic records.”
Powell J, Buchan I, J Med Internet Res 2005;7(1):e4 (14 March 2005)
“Many attempts to get clinicians to use electronic health records have failed, often because of difficulties with data entry. Technology should complement and improve clinical care, not impose extra burdens on already overloaded medical staff. The clinical “usability” of electronic records systems is particularly relevant with the recent appointment of service providers to implement the national Integrated Care Record Service for the NHS as usability also affects patient care. I examine important lessons learned from previous attempts to get clinicians to use computers in health care; discuss how clinicians actually work; make recommendations on designing or selecting clinical computer systems; and explore how the use of electronic health records might affect patient care.”
Stephen H Walsh, BMJ 2004;328:1184-1187 (15 May 2004)
Background: It is possible to provide patients with secure access to their medical records using the Internet. Such access may assist patients in the self-management of chronic diseases such as heart failure.
Objective: To assess how a patient-accessible online medical record affects patient care and clinic operations. The SPPARO (System Providing Access to Records Online) software consisted of a web-based electronic medical record, an educational guide, and a messaging system enabling electronic communication between the patient and staff.
Conclusions: Providing patients with congestive heart failure access to an online medical record was feasible and improved adherence. An effect on health status could not be demonstrated in this pilot study.
Ross SE, Moore LA, Earnest MA, Wittevrongel L, Lin C, J Med Internet Res 2004;6(2):e12
“A wide-ranging literature review of computer-based patient record (CPR) implementation over the past decade reveals that clinical, workflow, administrative, and revenue enhancement benefits of the CPR outweigh barriers and challenges — but only if healthcare organizations redesign certain work processes. Among other key efforts, organizations must train and motivate users to navigate CPR systems, as well as develop a common structured language. Clinicians who used CPRs found that electronic access to clinical information saves time and provides a thorough and efficient way to manage patient information.”
Tricia L. Erstad, Journal of Healthcare Information Management — Vol. 17, No. 4, 2003
“The Institute of Medicine stressed the need for continuous healing relationships, yet the delivery of health care has traditionally been confined to the physician office or hospital. We implemented an eHealth application tightly integrated with our electronic medical record system that provides patients with a convenient, continuously available communication channel to their physician’s office. Patients can view summary data from their medical record, including the results of diagnostic tests, and request medical advice, prescription renewals, appointments, or updates to their demographic information. We have found that patients embrace this new communication channel and are using the service appropriately. Patients especially value electronic messaging with their physicians and timely access to their test results. While initially concerned about an increase in work, physicians have found that use of electronic messaging can be an efficient method for handling non-urgent communication with their patients. Online tools for patients, when integrated with an electronic medical record, can provide patients with better access to health information, improve patient satisfaction, and improve operational efficiency.”
Tang, P., Black, W., Buchanan, J., Young, C., Hooper, D., Lane, S., Love, B., Mitchell, C., Smith, N., and Turnbull, J., Proceedings of the American Medical Informatics Association Annual Symposium, 2003, 649–653
“Almost all British general practitioners use computer based patient records, but most hospital doctors do not.”
Tim Benson, BMJ 2002;325:1086-1089 (9 November 2002)
Bartlett C et al, BMC Medical Informatics and Decision Making, 12(1)
Access to medical records on the Internet has been reported to be acceptable and popular with patients, although most published evaluations have been of primary care or office-based practice. We tested the feasibility and acceptability of making unscreened results and data from a complex chronic disease pathway (renal medicine) available to patients over the Internet in a project involving more than half of renal units in the UK.
Content and presentation of the Renal PatientView (RPV) system was developed with patient groups. It was designed to receive information from multiple local information systems and to require minimal extra work in units. After piloting in 4 centres in 2005 it was made available more widely. Opinions were sought from both patients who enrolled and from those who did not in a paper survey, and from staff in an electronic survey. Anonymous data on enrolments and usage were extracted from the webserver.
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Woods SS et al, J. Med. Internet Res., 15(3)
Full sharing of the electronic health record with patients has been identified as an important opportunity to engage patients in their health and health care. The My HealtheVet Pilot, the initial personal health record of the US Department of Veterans Affairs, allowed patients and their delegates to view and download content in their electronic health record, including clinical notes, laboratory tests, and imaging reports.
A qualitative study with purposeful sampling sought to examine patients’ views and experiences with reading their health records, including their clinical notes, online.
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Palen TE et al, JAMA. 2012 Nov 21;308(19)
Prior studies suggest that providing patients with online access to health records and e-mail communication with physicians may substitute for traditional health care services.
To assess health care utilization by both users and nonusers of online access to health records before and after initiation of MyHealthManager (MHM), a patient online access system.
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Pagliari C et al, JRSM short reports, 3(5)
To explore the integration of online patient Record Access within UK Primary Care, its perceived impacts on workload and service quality, and barriers to implementation.
Mixed format survey of clinicians, administrators and patients. Telephone interviews with non-users.
Primary care centres within NHS England that had offered online record access for the preceding year.
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Calvillo J et al, International Journal of Medical Informatics, 2012
Advancements in information and communication technologies have allowed the development of new approaches to the management and use of healthcare resources. Nowadays it is possible to address complex issues such as meaningful access to distributed data or communication and understanding among heterogeneous systems. As a consequence, the discussion focuses on the administration of the whole set of resources providing knowledge about a single subject of care (SoC). New trends make the SoC administrator and responsible for all these elements (related to his/her demographic data, health, well-being, social conditions, etc.) and s/he is granted the ability of controlling access to them by third parties. The subject of care exchanges his/her passive role without any decision capacity for an active one allowing to control who accesses what.
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Johnson AJ et al, Journal of the American College of Radiology, 9(4)
The aim of this study was to determine (1) the patient-preferred timing characteristics of a system for online patient access to radiologic reports and (2) patient resource needs and preferences after exposure to reports.
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Li YC et al, Yearbook of Medical Informatics, 2009(1)
Increasing patient demand for convenient access to their own healthcare data has led to more personal use of the Electronic Health Record (EHR). With “consumer empowerment” being an important issue of EHR, we are seeing a more “patient-centric” approach of EHR from countries around the world. Researchers have reported on issues in EHR sharing including concerns on privacy and security, consumer empowerment, competition among providers, and content standards. This study attempts to analyze prior research and to synthesize comprehensive, empirically-based conceptual models of EHR for personal use.
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Haggstrom DA et al, J Am Med Inform Assoc, 18 Suppl 1
In order to create user-centered design information to guide the development of personal health records (PHRs), 24 patients participated in usability assessments of VA’s MyHealtheVet program. Observational videos and efficiency measures were collected among users performing four PHR scenarios: registration and log-in, prescription refill, tracking health, and searching for health information. Twenty-five percent of users successfully completed registration. Individuals preferred prescription numbers over names, sometimes due to privacy concerns.
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Walker J et al, Annals of Internal Medicine, 155(12)
Little is known about what primary care physicians (PCPs) and patients would expect if patients were invited to read their doctors’ office notes.
To explore attitudes toward potential benefits or harms if PCPs offered patients ready access to visit notes.
he PCPs and patients completed surveys before joining a voluntary program that provided electronic links to doctors’ notes.
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Kim J, Bates DW. J Med Internet Res, 13(4)
Personal health records (PHRs) remain a relatively new technology and concept in practice even though they have been discussed in the literature for more than 50 years. There is no consensus on the definition of a PHR or PHR system even within the professional societies of health information technology.
Our objective was to analyze and classify the opinions of health information professionals regarding the definitions of the PHR.
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Beard L et al, J Am Med Inform Assoc, 19(1)
It is becoming increasingly apparent that there is a tension between growing consumer demands for access to information and a healthcare system that may not be prepared to meet these demands. Designing an effective solution for this problem will require a thorough understanding of the barriers that now stand in the way of giving patients electronic access to their health data.
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Collins SA et al, J Am Med Inform Assoc, 2011
Healthcare delivery organizations are increasingly using online personal health records (PHRs) to provide patients with direct access to their clinical information; however, there may be a lack of consistency in the data made available. We aimed to understand the general use and functionality of PHRs and the organizational policies and decision-making structures for making data available to patients.
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Urowitz S et al, BMC Medical Informatics and Decision Making, 8
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.
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Gravis G et al, Cancer, 2011
Information is crucial for increasing the patients’ empowerment and autonomy in relevant decision‐making processes, especially in malignant diseases. However, the extent to which information should be delivered is debated. The objective of this study was to assess the impact of providing systematic full access (SFA) to the medical record on anxiety, quality of life, and satisfaction.
Patients with newly diagnosed breast cancer, colon cancer, or lymphoma who had received adjuvant chemotherapy in an outpatient setting were included in a randomized controlled trial comparing those who requested access (RA) and those who provided SFA to the medical record. Anxiety was assessed using the Spielberger State‐Trait Anxiety Inventory before, during, and at the end of treatment. Quality of life was evaluated using the European Organization for Research and Cancer quality‐of‐life questionnaire (EORTC QLQ‐C30) before and at the end of treatment. Patients’ satisfaction and perception of the organized medical record (OMR) were evaluated using a specifically designed questionnaire at the end of treatment.
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Bhavnani V et al, Family Practice, 28(2)
Record access is likely to become an integral part of routine care in the UK. While existing research suggests that record access improves self-care and improves relationships between patients and clinicians, little is known about how patients make use of their ability to access their records or the impact that this has on health behaviour.
To explore patients’ use of access to their electronic GP record and the impact of that process on their health behaviour.
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Brown I et al,
This article analyses the legality of the use of electronic patient records in the NHS for research without explicit patient consent under UK and EU law, with particular reference to the adequacy of the information provided to patients and the increasing difficulties of achieving de-identification. In section II, we describe the main NHS databases used for medical research purposes in England and the transparency of this use, and the general problem of re-identification.
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Wen K et al, J Med Internet Res, 12(4)
Personal health records (PHRs) and the sharing of health information through health information exchange (HIE) have been advocated as key new components in the effective delivery of modern health care. It is important to understand consumer attitudes toward utilization of PHRs and HIE to evaluate the public’s willingness to adopt these new health care tools.
The purpose of this study was to examine consumer attitudes toward PHRs and their health care providers’ use of HIE, as well as to evaluate consumer use of the Internet for tracking PHRs.
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Turner AN et al, BMJ, 341
In the same population as Greenhalgh and colleagues report an unimpressive response to HealthSpace, more than 11 000 UK renal patients are active users of an online system Renal PatientView (www.renalpatientview.org; www.renal.org/rpv), which allows them to see live unscreened test results, with information about their diagnosis and treatment, and in many centres also clinic letters.
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Greenhalgh T et al, BMJ, 341(nov16 1)
To evaluate the policy making process, implementation by NHS organisations, and patients’ and carers’ experiences of efforts to introduce an internet accessible personal electronic health record (HealthSpace) in a public sector healthcare system.
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Cross M. BMJ, 341:c5913
Patients in England will be able to inspect and correct their NHS and social care records online from 2015 if the coalition government’s vision for the use of IT in the NHS becomes reality.
A strategy paper published on 18 October for consultation says that giving patients control of their records “opens up exciting new possibilities for online health and care services.” However, it is likely to generate new concerns about confidentiality, security, and consent.
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