ICMCC

the international council on medical & care compunetics

record access

17
April, 2014
Thursday

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

Electronic health records rife with flaws

Source: Joel Saland, ABQ Journal

“The electronic health-records article written by Winthrop Quigley (March 3: “Patient files go high-tech”) contained the misconception that the EHR allows a physician to see every scrap of information relevant to a patient’s care.
[ More ]

12 March 2014 | No Comments »
Categories: News, RA News, Record Access | Country: | EHR: , | Tags: , ,

 

Key findings from survey on patient views towards EHRs

Source: cpapoutsi, ICL

“High levels of patient and public concerns about the security of integrated EHRs in the UK highlight a need for more intensive public awareness and engagement initiatives, together with the establishment of trustworthy security and privacy mechanisms for health information sharing.
[ More ]

27 February 2014 | No Comments »
Categories: News, RA News, Record Access, UK EHR | Country: | EHR: , | Tags: , , , ,

 

A New Way to Satisfy Doctors’ Interest in Electronic Health Records Exchange

Source: PR.com

“A recent survey conducted in the UK revealed that 94 % of surveyed doctors believe patients should have some access to their health records in an electronic form (Accenture, 2013). However, only 11 % of them disclosed that they are currently able to provide such access for their patients.
[ More ]

5 February 2014 | No Comments »
Categories: News, RA News, Record Access, UK EHR | Country: | EHR: | Tags: , ,

 

Family doctors gain access to hospital records in Sarnia-Lambton

Source: Technology for Doctors

“Family doctors will soon be able to access records of their patients’ hospital stays under a new regional healthcare initiative. The rollout of the Erie St. Clair Local Health Integration Network’s (LHIN) electronic medical records download project in Sarnia-Lambton follows a pilot project in November that tested the approach with two physicians at the Chatham-Kent Family Health Team.
[ More ]

30 January 2014 | No Comments »
Categories: News, RA News, Record Access | Country: | EHR: , | Tags: , , ,

 

Technology to play bigger role in health care

Source: Marni Jameson, Orlando Sentinel

“Patients who meet the new program’s criteria take home a camera and computer monitor, as well as equipment to monitor vital signs remotely. They avoid hospital infections, while getting convenient care in the comfort of their home.
Though many consumers have had concerns about the sharing of electronic health records, this year patients might grow to appreciate the benefits.
[ More ]

23 January 2014 | No Comments »
Categories: News, RA News, Record Access | Country: | EHR: , | Tags: , , ,

 

Going Dutch again

Source: Lodewijk Bos, ICMCC

Now that my health is improving considerably, I’m slowly picking up pieces. Slowly, as I announced previously, so I will occupy  myself for the time being with EHRs and the (inter)national problems concerning their development and implementation.
[ More ]

17 January 2014 | 1 Comment »
Categories: Blog, RA News, Record Access | Country: | EHR: , | Tags: ,

 

Seniors reluctant to share PCEHR with all health professionals

Source: Natasha Egan, Australian Ageing Agenda

“Most senior Australians are willing to grant their GP, specialists, hospital medical staff and emergency workers full access to their electronic health record but are not inclined to do so for other health professionals or carers, according to a study targeting over-65s in regional Australia.
[ More ]

15 January 2014 | No Comments »
Categories: News, RA News, Record Access | Country: | EHR: , | Tags: , ,

 

STC recognized

Source: Hispanic Business

“21st Century recognized the contribution of STC and the value of applied health information technology in practice to improve population health and outcomes and recognized the value of telling one story that demonstrated what can be achieved through shared data and information between physicians and public health agencies.
[ More ]

28 August 2013 | No Comments »
Categories: ICMCC News, News, Overview, RA News, Record Access | Country: | EHR: , | Tags: , ,

 

Tracking Who Accesses Data Via HIEs

Source: Marianne Kolbasuk McGee, Healthcare Info Security

“Providing patients with more transparency into who’s electronically requesting their health information can not only improve data privacy, but also help patients catch record errors and ID theft, says David Staggs, a participant in a new pilot.
[ More ]

24 July 2013 | No Comments »
Categories: News, RA News, Record Access | Country: | EHR: , | Tags: , ,

 

Doctors’ views on patient access to EHRs “need to evolve”

Source: Kate McDonald, Pulse+IT

“A recent survey by technology services company Accenture found that while most Australian doctors want patients to actively participate in their own healthcare, there is still a great deal of reluctance about allowing patients full access and input into their electronic health records, a view that will need to evolve as patient expectations change.
[ More ]

22 July 2013 | No Comments »
Categories: News, RA News, Record Access | Country: | EHR: , | Tags: ,

 

Giving Patients a Role in Data Exchange

Source: Joseph Goedert, Health Data Management

“A pilot program at the University of Texas at Austin seeks to find the right processes for enabling patients to track who requests and receives their protected health information.
[ More ]

11 July 2013 | No Comments »
Categories: News, RA News, Record Access | Country: | EHR: , | Tags: , , , ,

 

Is patient access to EHR being handled properly by clinics?

Source: Robert Green, EHR Intelligence

“Creating patient advocates in the clinic is an evolving responsibility with many implications for all those concerned. The use of EHR brings together both clinic staff and patients together in many new ways. Whether it’s during the clinic visit or in some other appropriate form of interaction between staff and patient, the EHR continues to expand the conversation in the clinic because of the frequency of communication and disclosure of insights made available by health information in electronic form.
[ More ]

4 July 2013 | No Comments »
Categories: News, RA News, Record Access | Country: | EHR: , | Tags: , , ,

 

Australian doctors give patients less control over their e-health records: survey

Source: Adam Bender, Computerworld

“Doctors in Australia are more resistant to giving patients’ control over electronic health records than doctors in other countries, according to an Accenture survey.
[ More ]

3 July 2013 | No Comments »
Categories: News, RA News, Record Access | Country: | EHR: , | Tags: ,

 

Electronic Health Records Result in Reduced Medical Errors For Australian Doctors, Accenture Survey Finds

Source: Wall Street Journal

“Accenture’s survey revealed most Australian doctors (83 per cent) want patients to actively participate in their own healthcare by updating their electronic health records (EHR). However, the majority believe that patients should only have limited access to this record — a view shared across the surveyed countries. There was broad agreement among Australian doctors that patients should be able to update standard information in their health records, including demographics (87 per cent) and family medical history (78 per cent).
[ More ]

3 July 2013 | No Comments »
Categories: News, RA News, Record Access | Country: | EHR: , | Tags: , ,

 

Enhancing patient-centered communication and collaboration by using the electronic health record in the examination room

Source: White A et Danis M. JAMA, 309(22)

As widespread adoption of the electronic health record (EHR) takes place in US medical practice, many health care experts have emphasized the promising capabilities of the EHR to foster patient activation, which is a characteristic of patients who view themselves as active collaborators in their own health care management. The use of EHRs has the potential to facilitate patient-physician communication via electronic messaging.
[ More ]

20 June 2013 | No Comments »
Categories: RA News, Record Access, Science | Country: | EHR: , | Tags: ,

 

Securing a Super-Portal for Records

Source: Marianne Kolbasuk McGee, Healthcare Info Security

“New York state residents soon will be able to use a health information exchange’s portal to securely access all their records, rather than having to gain access from providers one-by-one, explains HIE leader David Whitlinger.
[ More ]

3 June 2013 | No Comments »
Categories: News, RA News, Record Access | Country: | EHR: , | Tags: , , , ,

 

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 –
[ More ]

16 May 2013 | No Comments »
Categories: News, RA News, Record Access | Country: | EHR: , | Tags: , , ,

 

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.
[ More ]

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 »
Categories: News, RA News, Record Access | Country: | EHR: , | Tags: , ,

 

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 »
Categories: News, RA News, Record Access | Country: | EHR: , | Tags: , , , ,

 

More Record Access News

Science

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

Source:

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.
[ More ]

11 September 2013 | No Comments »
Categories: Patients, RA Research, Science | Country: | EHR: , | Tags: , , ,

 

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.
[ More ]

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

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:

 

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

Going Dutch again

Now that my health is improving considerably, I’m slowly picking up pieces. Slowly, as I announced previously, so I will occupy  myself for the time being with EHRs and the (inter)national problems concerning their development and implementation.
[ More ]

 

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.
[ More ]

 

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