ICMCC

the international council on medical & care compunetics

record access

25
July, 2014
Friday

Patients

Giving Patients Granular Control of Personal Health Information: Using an Ethics ‘Points to Consider’ to Inform Informatics System Designers

Objective
There are benefits and risks of giving patients more granular control of their personal health information in electronic health record (EHR) systems. When designing EHR systems and policies, informaticists and system developers must balance these benefits and risks. Ethical considerations should be an explicit part of this balancing. Our objective was to develop a structured ethics framework to accomplish this.

Methods
We reviewed existing literature on the ethical and policy issues, developed an ethics framework called a “Points to Consider” (P2C) document, and convened a national expert panel to review and critique the P2C.
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11 September 2013 | No Comments »
Categories: Patients, RA Research, Science | Country: | EHR: , | Tags: , , ,

Patient access to complex chronic disease records on the Internet

Bartlett C et al, BMC Medical Informatics and Decision Making, 12(1)

Background
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.

Methods
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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15 April 2013 | No Comments »
Categories: Patients, RA Research, Record Access, Science | Country: | EHR: , | Tags: , , , , ,

Patient Experiences With Full Electronic Access to Health Records and Clinical Notes Through the My HealtheVet Personal Health Record Pilot: Qualitative Study

Woods SS et al, J. Med. Internet Res., 15(3)

BACKGROUND:
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.

OBJECTIVE:
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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4 April 2013 | No Comments »
Categories: Patients, Record Access, Science | Country: | EHR: | Tags: , , ,

Association of Online Patient Access to Clinicians and Medical Records With Use of Clinical Services

Palen TE et al, JAMA. 2012 Nov 21;308(19)

Context
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.

Objective
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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5 December 2012 | No Comments »
Categories: News, Patients, RA Research, Record Access, Science | Country: | EHR: , | Tags:

Embedding online patient record access in UK primary care: a survey of stakeholder experiences

Pagliari C et al, JRSM short reports, 3(5)

OBJECTIVES
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.

DESIGN
Mixed format survey of clinicians, administrators and patients. Telephone interviews with non-users.

SETTING
Primary care centres within NHS England that had offered online record access for the preceding year.
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7 June 2012 | No Comments »
Categories: Patients, RA Research, Record Access, Science, UK EHR | Country: | EHR: , | Tags: , , ,

Empowering citizens with access control mechanisms to their personal health resources

Calvillo J et al, International Journal of Medical Informatics, 2012

Background
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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24 April 2012 | No Comments »
Categories: Patients, RA Research, Record Access, Science | EHR: | Tags: , , , , , ,

Access to Radiologic Reports via a Patient Portal: Clinical Simulations to Investigate Patient Preferences

Johnson AJ et al, Journal of the American College of Radiology, 9(4)

Purpose
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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3 April 2012 | No Comments »
Categories: Patients, RA Research, Record Access, Science | Country: | EHR: , | Tags: , , ,

Electronic health record goes personal world-wide

Li YC et al, Yearbook of Medical Informatics, 2009(1)

OBJECTIVE
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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29 January 2012 | No Comments »
Categories: Patients, RA Research, Record Access, Science | EHR: | Tags: , ,

Lessons learned from usability testing of the VA’s personal health record

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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6 January 2012 | No Comments »
Categories: Patients, RA Research, Record Access, Science | Country: | EHR: , | Tags: , , ,

Inviting Patients to Read Their Doctors’ Notes: Patients and Doctors Look Ahead

Walker J et al, Annals of Internal Medicine, 155(12)

Background:
Little is known about what primary care physicians (PCPs) and patients would expect if patients were invited to read their doctors’ office notes.

Objective:
To explore attitudes toward potential benefits or harms if PCPs offered patients ready access to visit notes.

Design:
he PCPs and patients completed surveys before joining a voluntary program that provided electronic links to doctors’ notes.
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20 December 2011 | No Comments »
Categories: Patients, RA Research, Record Access, Science | Country: | Tags: , , ,

Analysis of the definition and utility of personal health records using q methodology

Kim J, Bates DW. J Med Internet Res, 13(4)

BACKGROUND
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.

OBJECTIVE
Our objective was to analyze and classify the opinions of health information professionals regarding the definitions of the PHR.
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1 December 2011 | No Comments »
Categories: Patients, RA Research, Record Access, Science | EHR: | Tags:

The challenges in making electronic health records accessible to patients

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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27 November 2011 | No Comments »
Categories: Patients, RA Research, Record Access, Science | Tags: ,

Policies for patient access to clinical data via PHRs: current state and recommendations

Collins SA et al, J Am Med Inform Assoc, 2011

Objective
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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13 September 2011 | No Comments »
Categories: Patients, RA Research, Record Access, Science | Country: | EHR: , | Tags: , ,

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

Urowitz S et al, BMC Medical Informatics and Decision Making, 8

BACKGROUND
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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21 August 2011 | No Comments »
Categories: Patients, Record Access, Science | Country: | EHR: , | Tags: ,

Full access to medical records does not modify anxiety in cancer patients

Gravis G et al, Cancer, 2011

BACKGROUND:
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.

METHODS:
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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24 May 2011 | No Comments »
Categories: Patients, RA Research, Record Access, Science | Country: | EHR: , | Tags: , , , ,

How patients use access to their electronic GP record–a quantitative study

Bhavnani V et al, Family Practice, 28(2)

BACKGROUND
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.

AIM
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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28 March 2011 | No Comments »
Categories: Patients, RA Research, Record Access, Science, UK EHR | Country: | EHR: , | Tags: , , ,

Using NHS Patient Data for Research Without Consent

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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14 March 2011 | No Comments »
Categories: Patients, RA News, RA Research, Record Access, Science | Country: | EHR: , | Tags: , , , , , ,

Consumers’ perceptions about and use of the internet for personal health records and health information exchange: analysis of the 2007 Health Information National Trends Survey

Wen K et al, J Med Internet Res, 12(4)

Background:
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.

Objective:
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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13 February 2011 | No Comments »
Categories: Patients, RA Research, Record Access, Science | Country: , | EHR: , | Tags: , , , ,

It’s a great idea and workable

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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28 January 2011 | No Comments »
Categories: Patients, RA Research, Record Access, Science, UK EHR | Country: | Tags: , ,

Adoption, non-adoption, and abandonment of a personal electronic health record: case study of HealthSpace

Greenhalgh T et al, BMJ, 341(nov16 1)

Objective
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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18 November 2010 | No Comments »
Categories: Patients, RA Research, Record Access, Science, UK EHR | Country: | EHR: , | Tags: , , ,