ICMCC

the international council on medical & care compunetics

record access

3
July , 2009
Friday

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: EHR, News, RA General, RA News, RAC, Record Access

 

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: EHR, News, RA General, RA News, RAC, Record Access

 

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: EHR, News, RA General, RA News, RAC, Record Access

 

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: EHR, News, RA General, RA News, RAC, Record Access

 

News

Recent

How much access should patients have to their medical record?

Source: KevinMD.com

“As more patient records go electronic, there is debate as to how much of it a patient should see.
[ More ]

25 June 2009 | No Comments »
Categories: EHR, EHR USA, News, RA News, Record Access, USA

 

Opening Physician’s Notes to Patients

Source: Steve Downs, The Health Care Blog

“Today’s Boston Globe ran a story (page one, no less!) announcing our grant to Beth Israel Deaconess Medical Center to run a three-site demonstration of opening up physicians’ notes to patients. That’s not just making labs, drugs, allergies, etc. available to patients – it’s giving them access to the actual notes that the physician records about a visit.
[ More ]

20 June 2009 | No Comments »
Categories: EHR, EHR USA, News, RA News, Record Access, USA

 

Should Patients Have Easy Access to Doctors’ Notes?

Source: jay parkinson + md + mph

“HIPAA mandates that people have unfettered access to their medical records. It’s a federal law. The argument shouldn’t be “should they have easy access?” It should be “Will the quality, accuracy, and honesty of medical records suffer or improve medical records that are visible with a simple log in?”
[ More ]

19 June 2009 | No Comments »
Categories: EHR, EHR USA, News, RA News, Record Access, USA

 

The State of Meaningful Use

Source: Michael Painter, The Health Care Blog

“Compare that report about the State Department to the HIT Policy Committee’s recommended vision for the role of patients and families. The committee envisions that someone would eventually “provide access for all patients” to populated personal health records and some self-management tools by 2015–about six years from now.
[ More ]

19 June 2009 | No Comments »
Categories: EHR, EHR USA, News, RA News, Record Access, USA

 

Imagine someone had been managing your data: next anecdote

Source: e-Patient Dave, e-Patients.net

“This is a new comment that appeared Wednesday night on my April 1 post about moving my data from my hospital’s system to Google Health.
[ More ]

19 June 2009 | No Comments »
Categories: EHR, EHR USA, News, RA News, Record Access, USA

 

Should Patients Have Easy Access to Doctors’ Notes?

Source: Jacob Goldstein, WSJ Health Blog

“You’re talking to your doctor, who is scribbling notes on a clipboard or typing on a keyboard. Maybe the note is something that seems a bit blunt, like “obese woman.”
[ More ]

19 June 2009 | No Comments »
Categories: EHR, EHR USA, News, RA News, Record Access, USA

 

Patients to get a look at physicians’ notes

Source: Liz Kowalczyk, The Boston Globe

“One doctor wrote that a patient was acting paranoid. Another typed that she had ordered tests to make sure a patient didn’t have cancer.
[ More ]

19 June 2009 | No Comments »
Categories: EHR, EHR USA, News, RA News, Record Access, USA

 

Ease of patient access, privacy called central to ‘user-friendly’ EMRs

Source: Neil Versel, FierceEMR

“Dave deBronkart, the New Hampshire cancer survivor widely known as “e-Patient Dave,” blew the whistle on the inaccuracy of claims data in Google Health PHRs at Boston’s Beth Israel Deaconess Medical Center a couple of months ago.
[ More ]

18 June 2009 | No Comments »
Categories: EHR, EHR USA, News, RA News, Record Access, USA

 

GPs urged to be ‘constantly alert’ on privacy

Source: Fiona Barr, e-Health Insider Primary Care

“GPs have been advised to be “constantly alert” to potential threats to patient confidentiality and privacy as their representatives back an opt-in model for data sharing.
[ More ]

12 June 2009 | No Comments »
Categories: EHR, EHR UK, News, RA News, Record Access, UK

 

Health Information Exchange Will Allow Patients to Share Medical Information

Source: Lisa Eramo, HealthLeaders Media

“Patients in Rhode Island will soon have a choice regarding whether they will allow their protected health information shared through a statewide health information exchange.
[ More ]

11 June 2009 | No Comments »
Categories: EHR, EHR USA, News, RA News, Record Access, USA

 

Fresh call for patient opt-in to Summary Care Record

Source: Pulse

“LMC leaders have issued a stark challenge to NHS IT chiefs over the rollout of the Summary Care Record, in a fresh call for an end to implied consent and a return to an opt-in model.
[ More ]

11 June 2009 | No Comments »
Categories: EHR, EHR UK, News, RA News, Record Access, UK

 

Meaningful Use of HIT for Consumers

Source: Josh Seidman, Information Therapy (Ix) Blog

“For the past several months, the Center for Information Therapy (IxCenter) has been working alongside other consumer advocates to guide the HHS definition of “meaningful use” of EHRs to include consumer access to meaningful information.
[ More ]

5 June 2009 | No Comments »
Categories: EHR, EHR USA, News, RA News, Record Access, USA

 

e-Patients Do Not Suffer From Database-Hugging Disorder

Source: Gilles Frydman, e-patients.net

“Gapminder Foundation Director Hans Rosling, modern statistician extraordinaire, gave an important talk at the Princeton’s Woodrow Wilson Center on May 26, 09. Almost everything he said about public health data applies to medical data in general.
[ More ]

5 June 2009 | No Comments »
Categories: EHR, EHR USA, News, RA News, Record Access, USA

 

EPD-pas voor meer controle over eigen dossier

Source: ICTZorg

“Om patiĂ«nten meer controle te geven over hun eigen dossier moet een EPD-pas voor alle burgers ingevoerd worden, die tevens dient ter autorisatie van de behandelend arts.
[ More ]

28 May 2009 | No Comments »
Categories: EHR, EHR Netherlands, Netherlands, News, RA News, Record Access

 

Washington, Oregon Build Health Records Banks

Source: Doug Nadvornick, OPB News

“Who do you think owns your medical file?
Hospitals and doctors’ offices are traditionally the keepers of personal medical records in the U.S. But now there’s a movement to give people more access to their own medical information.
[ More ]

27 May 2009 | No Comments »
Categories: EHR, EHR USA, News, RA News, Record Access, USA

 

Health IT program needs ID management

Source: EMR Specialists

“The Obama administration’s drive to implement electronic health records (EHRs) should have strong identity management tools to ensure privacy and security of the records, members of a panel of providers, vendors and policy experts said today.
[ More ]

25 May 2009 | No Comments »
Categories: EHR, EHR USA, News, RA News, Record Access, USA

 

Keeping Personal Health Records Personal

Source: Goedert, Joseph, Health Data Management, June 2009

This is part two of a three-part series on I.T. security. Part three, on authorization issues, will appear in the December issue.

The Indiana University Health Center in February started offering students the opportunity to create and maintain personal health records via a secure page on the Bloomington-based school’s student Web portal.
[ More ]

25 May 2009 | No Comments »
Categories: EHR, EHR USA, RA News, Record Access, Science, USA

 

GOP Reform Plan Includes Records Banks

Source: Joseph Goedert, Health Data Management

“A comprehensive health reform plan from conservatives in the House and Senate would authorize health records banks that collect and maintain individuals’ medical records.
[ More ]

23 May 2009 | No Comments »
Categories: EHR, EHR USA, News, RA News, Record Access, USA

 

Kaiser subscribers can access health records in a flash

Source: Bobby Caina Calvan, Healthcare IT Consultant Blog

“Electronic medical records, hailed as a bold and necessary new frontier in medicine, are taking another leap forward – even as many medical offices scramble to catch up.
[ More ]

22 May 2009 | No Comments »
Categories: EHR, EHR USA, News, RA News, Record Access, USA

 

Bill pushes doctors to computerize records

Source: Molly Merrill, Healthcare IT News

“A new study suggests that patients are open to having electronic medical records play a more central role in their care.
A research team at Beth Israel Deaconess Medical Center in Boston led the study to determine how patients feel about converting to EMRs.
[ More ]

19 May 2009 | No Comments »
Categories: EHR, EHR USA, News, RA News, Record Access, USA

 

More Record Access News

Science

Insights for Internists: “I Want the Computer to Know Who I Am”

Source: Walker, Jan et al, Journal of General Internal Medicine, Volume 24, Number 6

BACKGROUND:
In designing electronic personal health records (PHRs) and related health technologies, lay perspectives are rarely solicited, and we know little about what individuals want and need.
[ More ]

19 May 2009 | No Comments »
Categories: EHR, EHR USA, Patients, RA Research, Record Access, Science, USA

 

The Limits of Free Speech: The PHR Problem

Source: Simborg, Donald W., J Am Med Inform Assoc. 2009;16:282-283

Patients own their medical records. This truth has had a difficult history for those of us who wish to have a single record of our health, wellness, and disease and want to convey that record to whomever we wish whenever we wish. The lack of interoperability among the many sources of our medical record, coupled with the hassle associated with obtaining a copy of one or more of the fragments of our record under the control of providers, has been and continues to be a consumer frustration.
[ More ]

6 May 2009 | No Comments »
Categories: EHR, EHR USA, Patients, RA Research, Record Access, Science, USA

 

Acceptability of a Personally Controlled Health Record in a Community-Based Setting: Implications for Policy and Design

Source: Weitzman, Elissa R. et al, J Med Internet Res 2009;11(2):e14

Background:
Consumer-centered health information systems that address problems related to fragmented health records and disengaged and disempowered patients are needed, as are information systems that support public health monitoring and research. Personally controlled health records (PCHRs) represent one response to these needs. PCHRs are a special class of personal health records (PHRs) distinguished by the extent to which users control record access and contents. Recently launched PCHR platforms include Google Health, Microsoft’s HealthVault, and the Dossia platform, based on Indivo.
[ More ]

29 April 2009 | No Comments »
Categories: EHR, EHR USA, RA Research, Science, USA

 

If You Build It, Will They Come? The Kaiser Permanente Model Of Online Health Care

Source: Silvestre, Anna-Lisa et al, Health Affairs, 28, no. 2

“Although health care has lagged behind other industries in adopting online services, consumers will embrace online tools such as obtaining results of lab tests, scheduling appointments, and doctor-patient e-mail.
[ More ]

10 March 2009 | No Comments »
Categories: EHR, EHR USA, Patients, RA Research, Record Access, Science, USA

 

Individuals Appreciate Having Their Medication Record on the Web: A Survey of Attitudes to a National Pharmacy Register

Source:

Background: Many patients receive health care in different settings. Thus, a limitation of clinical care may be inaccurate medication lists, since data exchange between settings is often lacking and patients do not regularly self-report on changes in their medication. Health care professionals and patients are both interested in utilizing electronic health information. However, opinion is divided as to who should take responsibility for maintaining personal health records. In Sweden, the government has passed a law to enforce and fund a national register of dispensed medications. The register comprises all individuals with dispensed medications (6.4 million individuals, September 2006) and can be accessed by the individual online via “My dispensed medications”. The individual has the right to restrict the accessibility of the information in health care settings.
[ More ]

12 November 2008 | No Comments »
Categories: EHR, EHR Sweden, Patients, RA News, RA Research, Record Access, Science, Sweden

 

More Record Access News

 

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

Observations 23 June 2009: Declaration

It had to happen. After weeks of following the discussion “meaningful use” it became obvious that the patient should be part of the equation. And it did happen. Yesterday “A Declaration of Health Data Rights” was published. And the whole US health IT blog world is buzzing about ownership.
[ More ]

 

The Beauty of ICMCC News Page

Marcel Salathe is the author of an applet that made this rendering. You can see it in action here.
[ More ]

 

Interoperability Summit: Establishing the Infrastructure for Health Assurance and Disease Prevention, Washington 1-2 June 2009

Establishing infrastructure for health assurance and disease prevention through healthcare transformation was the theme of this invitation-only event. The meeting was sponsored by the American Institute of Medical and Biological Engineering (AIMBE) and co-sponsored by all major technical professional societies engaged in health information technology issues, from ethics and standards
 to patient care and eHealth.
[ More ]

 

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