Discussions around this topic seem to have become much more frequent lately.
First we have this one:
Why Can't Patients See Their EHR Data?
Journal of the American Medical Informatics Association outlines arguments for and against expanding patient access to their health data.
By Ken Terry, InformationWeek
November 29, 2011
Should healthcare providers give patients access to their electronic health records and if so, how do they make that happen? A new review in the Journal of the American Medical Informatics Association (JAMIA) examines the complexities of giving patient access to their records online.
Written by researchers at the University of Toronto but focused largely on the U.S. environment, the study notes that while EHR data is not typically being shared with patients, many consumers want access. And research suggests that data sharing with patients, coupled with communication and education, can help improve efficiency, quality of care, and patient satisfaction while also lowering costs.
On the other hand, the researchers point out, there are many barriers to making that goal a reality. Among them are:
-- The cost of integrating patient access features into existing EHRs that were not designed for it.
-- The fragmentation of data into many health information silos maintained by different organizations.
-- Lack of understanding of the privacy implications of online data sharing.
-- Liability concerns that may arise from the sharing of data among patients and multiple providers.
-- Disagreements over whether patients or providers control the data.
-- Disagreements over how timely patient access to data should be.
-- Lack of a consensus regarding which portions of an EHR should be available to patients.
-- Questions about whether physicians should be able to screen certain information, such as lab results, before patients can see it.
-- The inability of patients who lack medical training to understand much of the data in an EHR.
-- The lack of time (and incentives) for physicians to translate their EHR data into laymen-friendly terms.
Under the federal Health Insurance Portability and Accountability Act (HIPAA), every person "has a right of access to inspect and obtain a copy of protected health information." Although that data is supposed to remain electronic if it originated in an EHR, in practice it is usually printed out for patients when it is provided at all, according to Robert Steinbrook, writing in the New England Journal of Medicine.
The full article is here:
Here is the abstract of the JAMIA paper:
J Am Med Inform Assoc doi:10.1136/amiajnl-2011-000261
The challenges in making electronic health records accessible to patients
- Received 18 March 2011
- Accepted 19 October 2011
- Published Online First 25 November 2011
Abstract
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. This paper reviews the following challenges related to the sharing of electronic health records: cost and security concerns, problems in assigning responsibilities and rights among the various players, liability issues and tensions between flexible access to data and flexible access to physicians.
At the same time this appeared from the UK:
Government announces new Open Data plans
29 November 2011 Rebecca Todd
The government has pledged that everybody in England will have online access to their GP records by “the end of this parliament” in 2015.
The announcement was made as part of Chancellor George Osborne’s Autumn Statement, which painted a generally bleak picture of the UK economy, while including some measures to try and stimulate growth.
Among these are a Plan for Growth that includes a number of Open Data measures aimed at stimulating industry and jobs. These were developed in collaboration with a number of companies including GlaxoSmithKline.
A document outlining the measures says providing access to personal GP records online will empower patients and encourage the market for education in data management and learning platforms.
“GP practices that can already provide online access are encouraged to do so,” it says. Successive governments have promised patients electronic access to their records.
Giving patients ‘control’ of their records was a central plank of the ‘Information Revolution’ consultation that the government ran last year, that was supposed to lead to a new information strategy for the NHS.
More here:
and in parallel we had discussions regarding image sharing:
Working toward patient control of information
Joseph Conn
I had a chance to speak with Dr. David Mendelson during the Radiological Society of North America show in Chicago this week. A project he mentioned provided another data point in what I've been seeing as a trend—restoring some measure of control to patients over the sharing of their healthcare information.
Mendelson is chief of clinical informatics at Mt. Sinai Medical Center in New York and co-chairman of Integrating the Healthcare Enterprise International. Mendelson was an RSNA presenter on health information technology to a standing-room-only crowd.
His talk included an update on a pilot project that his hospital and four other provider organizations are working on under a $4.7 million contract from the National Institutes of Health' National Institute of Biomedical Imaging and Bioengineering. The idea is for radiologists to use standards-based messages to send encrypted radiological images and reports to a data clearinghouse, where they will be routed to patients' personal health records.
Lots more here:
And to remind us all what can happen when clinical information is not followed up, goes missing or whatever else goes wrong we have this:
Both Patients And Physicians Can Suffer When Test Results Aren’t Reported
By Michelle Andrews
Nov 29, 2011
Medical tests can reveal critical information about a person's health, but only if the results are communicated to clinicians and patients. Sometimes, the ball gets dropped somewhere between the lab or the radiology department and the clinician who ordered the test and the patient.
In Peggy Kidwell's case, a mix-up over doctors' names led to a year-long delay in a breast cancer diagnosis.
After her annual gynecological exam and mammogram several years ago at a medical center near her Virginia Beach home, she got a letter from her doctor saying the results of her Pap test were normal. She assumed that she would hear from her doctor if anything untoward showed up on her mammogram exam and thought no more about it.
A year later, when Kidwell went back for her annual exam, her doctor, finding no mammogram results in her chart, asked why she hadn't gotten a screening exam the previous year. When Kidwell said she had, the doctor investigated. Five hours later, the doctor called Kidwell to tell her she had found the results and it looked as though she had breast cancer.
More here:
It is clear that there are good reasons why individuals should have timely access to their own private information in a secure way. It is equally clear that as we move to having more patient involvement in their care patients are going to have to accept more responsibility for following up if for example they have had a test and do not know what the result was.
Additionally we are going to have to recognise that if access is available and used then there is a need to make the information user friendly or spend time explaining what various tests might mean. This may come at a cost - and we also need to make sure that results that might wrongly worry a consumer are just provided out of the blue. We need protocols and controls to ensure any bad news is given with the right sort of support and discussion available.
I am sure this will not be the last we have on this topic.
David.
