ICMCC

the international council on medical & care compunetics

record access

21
May, 2013
Tuesday

Patient Record Access

These pages deal with aspects of the accessibility and portability of electronic health records for patients and their families, carers, service providers and for planners.
We would like to point out that this portal is not comprehensive, but designed to create an overview to inform and to stimulate discussion and debate on Patient Record Access.

ICMCC hosts 2 national discussion websites on Patient Record Access
in the UK and in The Netherlands.

ICMCC supports the Record Access Collaborative.

General

Introduction

The Electronic Health Record is globally accepted as a necessity:

  • to better meet patient expectations,
  • to expedite many tedious work processes such as prescription writing and creation of chart notes, service administration, research, planning and audit, communication between patients and providers, fiscal governance
  • to create new ways in which the health of our patients can be improved
  • to improve cost efficiency due to raising demands of healthcare and the aging population
  • Portability - travel, second opinions, emigration, working abroad, distant working and support for developing countries and as part of aid, war, famine and assistance to refugees While professional experience with the EHR is generally positive, there are even more opportunities for improving care with the EHR once patients have access to their own records.

Evidence-based benefits include:

  • Improving the relationship between clinician and patient
  • Improving trust between patient and clinician
  • Practical support for patients in managing their health
  • Improving compliance
  • Patients feel empowered to make decisions about their health?
  • More efficient use of consulting time

RA Collaborative

The Record Access Collaborative is being developed as a service to the public, patients, health services and industry. The aim is to bring together those across the world who have an interest in seeing record access more widely available and maximising benefits that flow from it and to be instrumental in managing practical and technical aspects concerning patient record access in relation to local/national policies.
Read more on the goals of the RAC.

 

RAC Newsletter December 2007

Source:

“Welcome to the Record Access Collaborative Progress Report which covers the last 3 months or so. As always activity and developments in the field have been steady.
In the UK, Wales is developing full records access to practices. HealthSpace has begun its pilots, accompanied as always by controversy. EMIS/PAERS has gone national, switching on all EMIS practices for record access if they want to take it up.
In Europe, we feature France and Germany as they begin trials of record access. In the US, Microsoft and Google are entering the field, stimulating a lot of controversy, reflected here.
Patient experiences are featured again and remain very positive.
As an introduction, however, we feature 2 important contributions. The first is a letter from the GMC endorsing record access in principle – we see this as reassuring to clinicians. Also, a link to an interesting and balanced overview of record access from the BMJ.”
Newsletter
Brian Fisher, December 2007

7 January 2008 | No Comments »
Categories: News, RA General, RA News, RAC, Record Access | EHR:

 

RAC Newsletter July 2007

Source:

“As usual, there has been a lot going on, both in the UK and elsewhere.
In the UK, the highlights are perhaps:

  • the Early Adopter sites for the Summary Care Record going live in 2 areas of the UK.
  • The continuing enlargement of the 100 practice pilot enabling an increasing number of practices to enable full patient record access
  • The pushing forward of the eHealthCard that is now being offered to practices in the UK
  • The resignation of Richard Granger who runs the IT programme in the UK. This may offer a more open approach to IT development

In Europe, the recent ICMCC conference in Amsterdam highlighted record access and offered a number of concrete developments, in Estonia, the Czech Republic and in the Netherlands.
But first, developments outside Europe.”
Newsletter
Brian Fisher, July 2007

16 July 2007 | No Comments »
Categories: News, RA General, RA News, RAC, Record Access | EHR:

 

RAC Contribution by Denis Protti

Source:

A rare treat! We have an original article by Prof Denis Protti, Professor, Health Information Science at University of Victoria, British Columbia, Canada, written especially for this Record Access Collaborative edition.
[ More ]

4 June 2007 | No Comments »
Categories: News, RA General, RA News, RAC, Record Access | EHR:

 

RAC Newsletter March 2007

Source:

“The record access collaborative is being developed as a service to the public, patients, the NHS and industry. The aim is to bring together those who have an interest in seeing record access more widely available and maximising benefits that flow from it.
The NHS has made a clear statement of principle that patients should be able to access their records, subject to legal safety restrictions. There is good evidence of substantial benefits for patients.”
Newsletter
Brian Fisher, March 2007

29 March 2007 | No Comments »
Categories: News, RA General, RA News, RAC, Record Access | EHR:

 

News

Recent

Personal Health Record Use by Adolescents

Source: John D. Halamka, MedCity News

“In response to many questions about PHR use by adolescents, I asked Fabienne Bourgeois, the expert at Children’s Hospital Boston, to write this guest blog post –
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16 May 2013 | No Comments »
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Are Patients From Mars and Health Care Professionals from Venus? – Part 1

Source: Michael Seres, beingapatient

“It has been a little while I know. Sometimes though the patient in me rears its ugly head again and I have to get out of blogger mode and in to being a bowel transplant patient. That is kind of a long winded apology but The Churchill Hospital, Oxford has seem a little too much of me of late.
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7 May 2013 | No Comments »
Categories: News, RA News, Record Access, UK EHR | Country: | EHR: , | Tags: ,

 

The Role of Patient Portals in the Future of Healthcare

Source: Nicole Spector, HealthTechZone

“As we get increasingly digital and Internet-savvy, more and more healthcare patient portals are cropping up, and thus, medical patients now have greater access to their health information than ever before. Patients can also be hands-on in supplying, questioning and correcting their data, which can help improve the accuracy of the data.
[ More ]

5 May 2013 | No Comments »
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What’s e-health and what does it mean for you?

Source: Candace Y.A. Montague

“If you visit a doctor’s office or hospital and you usually see stacks of manila folders with labels on them and loads of paper inside. When a doctor wants to research more about a patient, it can take a while to sort through the file and decipher handwritten notes.
[ More ]

3 May 2013 | No Comments »
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Electronic health records key to patient care quality improvement

Source: Hospital Healthcare

“A new Accenture (NYSE:ACN) survey reveals that almost two thirds of doctors surveyed in England (65%) believe that the introduction of electronic health records has improved the quality of patient care.
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25 April 2013 | No Comments »
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Two thirds of doctors support introduction of electronic health records

Source: PublicTechnology

“Technology company Accenture has unveiled its latest research which has found that almost two thirds of doctors in England believe that the introduction of electronic health records has improved the quality of patient care.
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24 April 2013 | No Comments »
Categories: News, RA News, Record Access, UK EHR | Country: | EHR: , | Tags: ,

 

Why don’t first responders have instant access to EHRs?

Source: Jennifer Bresnick, EHR Intelligence

“Unfortunately, it often takes tragedies like this week’s Boston bombing to raise debate about how to respond to emergencies where an injured patient’s life may hinge on how many seconds it takes for them to receive medical care. In a trauma situation where a patient may be experiencing terror and confusion, or may be unconscious, paramedics can’t rely on them to remember what medications they’re allergic to.
[ More ]

19 April 2013 | No Comments »
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Patient EMR Access May Be The Biggest Cultural Shift

Source: Anne Zieger, Hospital EMR and EHR

“As most readers probably know, U.S. doctors are skittish about giving patients full access to their medical records. That fact was underscored by a recent Accenture study, which concluded that 65 percent of doctors think patients should only have limited access, and 4 percent feel patients should have no access.
[ More ]

16 April 2013 | No Comments »
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Online Health Records for Patients Will Still Require Oversight

Source: Jan Cottingham, Arkansas Business

“The incident helps illustrate a basic tenet about the move in the U.S. toward electronic health records: The patient is ultimately responsible for the accuracy and completeness of his health records. An analogy may be helpful here: Being able to pay your credit card online may ease the chore, but you’re still responsible for ensuring your account is credited.
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8 April 2013 | No Comments »
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Patients Like Online Health Records Access, Study Says

Source: Ken Terry, InformationWeek

“When patients at the VA Medical Center in Portland, Ore., were given access to key parts of their electronic health records such as visit notes, lab results and discharge summaries, they believed that the ability to view their records helped them in many ways.
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4 April 2013 | No Comments »
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Removing the red tape from patient records

Source: Jim Golden, Forbes

“Consumers have become accustomed to using smart phones for self-managing many aspects of their daily lives but still lack access to their own healthcare data. While many doctors capture volumes of patient data in their own repositories, it’s rare that patients ever have access to this information, separating them from their personal data.
[ More ]

2 April 2013 | No Comments »
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Physicians prefer a shielded EHR view for patients

Source: Bernie Monegain, PhysBizTech

“Even as policymakers are pushing patient engagement, a new survey signals doctors may not be ready to relinquish control of their patients’ medical record.
[ More ]

30 March 2013 | No Comments »
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EHR Survey: Most Docs Say Full Patient Access Not a Good Idea

Source: Healthcare Innovation Center

“A new Accenture survey shows most U.S.-based doctors (82 percent) want patients to actively participate in their own healthcare by updating their electronic health records. However, only a third of physicians surveyed (31 percent) believe their patients should have access to their full health record. These findings were consistent among 3,700 doctors surveyed by Accenture in eight countries: Australia, Canada, England, France, Germany, Singapore, Spain and the United States.
[ More ]

12 March 2013 | No Comments »
Categories: News, RA News, Record Access | Country: | EHR: , | Tags: ,

 

Physicians would like patients to update their EHR, but full access? Notsomuch

Source: Stephanie Baum, MedCity News

“More than half of physicians say allowing patients to update their electronic health records, through say, a patient portal, would be a good way to get consumers more engaged in their healthcare, which could help crack that great big $289 billion problem of adherence. And yet, only 31 percent say they should have full access to it and 20 percent of the 3,700 physicians surveyed across eight countries actually provide online access to their patient chart or medical summary. Why?
[ More ]

10 March 2013 | No Comments »
Categories: News, RA News, Record Access | Country: | EHR: , | Tags: , , ,

 

Most U.S. Doctors Believe Patients Should Update Electronic Health Record

Source: The Financial

“A new Accenture survey shows that most U.S. doctors surveyed (82 percent) want patients to actively participate in their own healthcare by updating their electronic health records. However, only a third of physicians (31 percent) believe a patient should have full access to his or her own record, 65 percent believe patients should have limited access and 4 percent say they should have no access.
[ More ]

6 March 2013 | No Comments »
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GPs not there on records access – survey

Source: e-Health Insider

“The overwhelming majority of GP practices are not ready to implement the government’s flagship NHS IT pledge to give patients online access to their records by 2015.
[ More ]

21 February 2013 | No Comments »
Categories: News, RA News, Record Access, UK EHR | Country: | EHR: , | Tags: , , ,

 

Postbedrijf maakt Zwitsers EPD

Source: Zorgmarkt

“Ook in Zwitserland is men druk met het elektronisch patiëntendossier. Daar wordt de techniek ontwikkeld door Swiss Post. Het systeem, Vivates, wordt in het kanton Genève geïntroduceerd, na een succesvolle pilot in vier gemeenten. Ook het kanton Tessin gaat het patiëntendossier gebruiken en start dit voorjaar een pilot voor de discipline oncologie. Andere kantons geven aan eveneens geïnteresseerd te zijn.
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19 February 2013 | No Comments »
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What the new HIPAA means for digital health access

Source: Jonah Comstock, mobihealthnews

“HIPAA is a valve, not a blockage.” At least, that’s what Office of Civil Rights (OCR) director Leon Rodriguez has said about the Health Insurance Portability and Accountability Act of 1996.
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29 January 2013 | No Comments »
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Internet, un espacio cada vez más necesario para la Sanidad

Source: David Rodríguez Carenas, Diario Médico

“Aunque con excepciones que confirman la regla, como el poco seguimiento del piloto de cita previa on-line en Cantabria, es un hecho que Sanidad e internet van cada vez más unidos. O, más bien, que la Sanidad ya no se concibe como tal sin la presencia de la red. Así demuestra cada estudio que ha analizado el uso de internet para buscar información relativa a la salud. Si en 2003 un 28,7 por ciento de los internautas usaron la red con ese propósito, en 2005 la proporción ascendió al 29,7 por ciento, según datos de Red. es, entidad pública encargada de consolidar el desarrollo de la sociedad de la información en España.
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29 January 2013 | No Comments »
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Computers are meaningless in health care without computable data

Source: Margalit Gur-Arie, KevinMD

“If this were a business concerned with bottom lines, cash flows and sustainability, this would be a good time to begin planning one of those posh executive retreats to evaluate current strategy. People would be feverishly working on pulling data for PowerPoint presentations, summarizing market research and deciding whether to select the vegetarian meal or not.
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14 January 2013 | No Comments »
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More Record Access News

Science

Patient access to complex chronic disease records on the Internet

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

Source: 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.
[ More ]

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

 

Inviting patients to read their doctors’ notes: a quasi-experimental study and a look ahead

Source: Delbanco T et al, Annals of internal medicine, 157(7)

BACKGROUND
Little information exists about what primary care physicians (PCPs) and patients experience if patients are invited to read their doctors’ office notes.

OBJECTIVE
To evaluate the effect on doctors and patients of facilitating patient access to visit notes over secure Internet
[ More ]

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

 

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

Source: 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.
[ More ]

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

Source: 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.
[ More ]

7 June 2012 | No Comments »
Categories: Patients, RA Research, Record Access, Science, UK EHR | Country: | EHR: , | Tags: , , ,

 

More Record Access Science

 

ICMCC

Books

Medical and Care Compunetics 5
Lodewijk Bos, Bernd Blobel (eds)
Series on Health Information Technologies 147, IOSPress, 2008

Publications

Lodewijk Bos, Andy Marsh, Denis Carroll, Sanjeev Gupta, Mike Rees,
Patient 2.0 Empowerment
in: Proceedings of the 2008 International Conference on Semantic Web & Web Services SWWS08, Hamid R. Arabnia, Andy Marsh (eds), pp.164-167, 2008

Lodewijk Bos, Denis Carroll, Andy Marsh,
The Impatient Patient,
in: Medical and Care Compunetics 5, L. Bos et al (eds), IOS Press 2008 (PubMed)

Lodewijk Bos,
Medical and Care Compunetics - the Future of Patient-Related Care,
in: Medical and Care Compunetics 4, L. Bos and B. Blobel (eds.), IOS Press, 2007 (PubMed)

Brian Fisher, Richard Fitton, Lodewijk Bos,
WHO recommendation on record access (draft),
in: Medical and Care Compunetics 4, L. Bos and B. Blobel (eds.), IOS Press, 2007 (PubMed)

Thierry Chaussalet and Lodewijk Bos,
The ICMCC second conference on "Medical and Care Compunetics"
, in: IJMI, Volume 75, Issue 9, September 2006, Pages vii-viii (PubMed)

Lodewijk Bos, Swamy Laxminarayan and Andy Marsh,
The Information Paradigm,
in: Medical and Care Compunetics 2, L. Bos et al (eds.), IOS Press, 2005 (PubMed)

A. Marsh, S. Laxminarayan and L. Bos,
Healthcare Compunetics,
in: Medical and Care Compunetics 1, L. Bos et al (eds.), IOS Press, 2004 (PubMed)

Blog

AHA-Erlebnis

I am not a US citizen, so I can’t officially react to the latest news from the US patient access front nor put my opinion on the “protest page“. What is going on. First see this post from the Healthcare IT News and following see the post my friend e-Patient Dave wrote about it.
[ More ]

 

Guest Post: WHCC – Washington, DC, April 16-18, 2012

As a public health information technology consulting company, it seemed unusual for STC to attend the recent 9th Annual World Health Care Congress, a three-day conference supported by all major health insurance companies, clinical provider networks, and emerging Accountable Care Organizations. The attendee list reads like a who’s who of the health care industry, all working to improve patient care while tackling today’s challenges.
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Glad to be Dutch

This morning I had a mail in my inbox from my good friend e-patient Dave. He brought to my attention a new blog post he produced over the weekend. Dave was the one who initiated the phrase “Give me my damn data“.
[ More ]

 

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