There has a fair bit recently appear on privacy.
Privacy obsesses lawyers, not patients
COMMENT: James Gillespie and Stephen Leeder | October 04, 2008
JUST how worried are Australians about the privacy of their health records? This question has dogged the long and tortuous history of efforts to change to electronic health record systems. If we are to have a health service where information of relevance to the care of a patient is readily available, anywhere, any time, to those caring for them, substantial changes will be needed in the way we manage medical records.
Against this, privacy concerns are regularly adduced as the reason why progress cannot be made in using data derived from the care of individuals for improving the health service. The public, it is often said, is paranoid about the privacy of personal health records. This predominantly legal concern plays into the hands of professional and bureaucratic groups who have resisted more open scrutiny of these and other data (such as Medicare) that might reveal their own shortcomings.
Do patients trust their doctors and the broader systems to keep personal, and often sensitive, records away from unauthorised view or use? Many of the problems of our healthcare system - from unnecessary deaths from medication and hospital error to the fractured management of chronic illness - have been traced to communication problems. General practitioners, pharmacists, physiotherapists and hospital-based specialists have been unable to get easy access to a patient's medical history - their medications, allergies and past encounters with the health system. The vast majority of medical communication is untouched by advances in information technology.
Yet the power of the technological imperative, as manifest in IT, will change all of this. As new, more flexible internet technologies overcome the cost and technical obstacles that blocked information sharing, faster and more effective transfer of information has raised fears, though whether in the minds of patients is rarely proved, of new assaults on the privacy of patients' health records.
So what do Australians think about privacy and their health records? The Menzies Centre for Health Policy and The Nous Group recently surveyed a representative sample of 1200 Australians aged 18-plus on their attitudes to the health system.
One group of respondents was reminded that during a period of illness, patients are frequently treated by a series of health professionals. Should those charged with the care of the patient all have direct access to their records? Or should they rely on taking a medical history from the patient each time the patient passes from one carer to another, as happens now with astonishing frequency? There was an overwhelming consensus - 90 per cent - in favour of direct access for all treating health professionals to the patient's records: one record, available to all carers.
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James Gillespie is deputy director and Stephen Leeder the director of the Menzies Centre for Health Policy at the University of Sydney
See full article at the Australian.
http://www.theaustralian.news.com.au/story/0,25197,24437561-23289,00.html
We have also had recently
Data privacy concerns remain as Google PHR grows
By: Rebecca Vesely/ HITS staff writer
Story posted: September 29, 2008 - 5:59 am EDT
About two years ago, lightning struck for SafeMed, a healthcare analytics software firm, when representatives from Google strolled by the fledgling company’s booth at a trade show.
“That initiated some discussions,” says Richard Noffsinger, chief executive officer of SafeMed. The San Diego-based company signed on as one of Google Health’s first partners, sprouting more growth and new clients.
“The partnership has helped us in all areas,” Noffsinger says, including lending financial stability. SafeMed also benefited from its collaboration with Google’s engineers so it could meet expected growing demand from the millions of Google users. “Having a customer of the stature of Google is incredible.”
Google Health, launched in May to much fanfare, allows users to store, organize and manage their personal health records and other information online. The concept is that the approach puts individuals in charge of their own health data and allows them to access that data when they switch providers, visit an emergency room or search for relevant health information.
The jury is still out on whether people will use Google Health or another consumer-driven online PHR, and Google has declined to release any numbers to date.
To make the product attractive to consumers and to ensure personal medical information is relevant, Google Health is relying extensively on third parties. Google is deploying the so-called “long tail” model, in which a large number of unique products or services are offered to a wide range of people with the expectation that freedom of choice will drive participation.
In applying that model to healthcare, Google Health, along with Microsoft Corp., which offers a competing product called HealthVault, are rapidly shaping the health information sphere. HealthVault, launched in fall 2007, is a formidable competitor, with more than 100 partners, including leaders in the health information technology field such as Kaiser Permanente.
Much more here:
http://www.modernhealthcare.com/apps/pbcs.dll/article?AID=/20080929/REG/309299997/1029/FREE
And then we have the results of two recent surveys
Americans say EHRs worth the privacy risks
Dec. 4, 2007 —A majority of polled Americans believe EHRs have the potential to improve U.S. healthcare and that the benefits outweigh privacy risks, based on a Wall Street Journal (WSJ) Online/Harris Interactive poll.
According to poll results published in The WSJ, three-quarters of the 2,153 survey respondents agreed that patients could receive better care if doctors and researchers were able to share information using electronic systems and 63 percent agreed such record sharing could decrease errors.
Also, 55 percent agreed the transition could reduce healthcare costs, compared with 15 percent who disagree. However, about one-quarter of those polled remained unsure whether EHRs can provide these benefits.
More here:
http://www.healthimaging.com/index.php?option=com_articles&task=view&id=8917&division=hiit
and here
Few Americans confident in privacy of EHRs
By: Rebecca Vesely/ HITS staff writer
Posted: October 9, 2008 - 5:59 am EDT
Many Americans want electronic health records, and say they would access their personal health information online, but the majority are concerned about confidentiality issues, according to a survey by the Employee Benefit Research Institute, a not-for-profit, nonpartisan organization.
Fifty-five percent of those surveyed said it is extremely or very important for providers to use electronic or computer-based health records instead of paper ones. Another 25% said it is somewhat important, while 7% said it is not too important and 9% said it is not important at all. Those results are statistically unchanged from when the question was asked in 2005.
More here:
http://modernhealthcare.com/apps/pbcs.dll/article?AID=/20081009/REG/310099994
What one needs to do with all this is drill down to the next layer and talk to individuals and understand what they want and fear. The answers are a little different from what surveys tell you.
First it is true most people think electronic patient records are a good idea and should be used, especially if security and privacy can be pretty much assured.
Second most people understand that data leaks and disclosure is possible occasionally and so….
Third how worried you are about information leak depends on individual circumstances – if you have a potentially stigmatizing medical history (HIV/AIDS, Hepatitis C, Mental Illness, severe genetic risk etc) you are much more worried and might even try to keep such information secret etc – with a risk to all.
For this reason surveys that don’t deeply explore the reasons for anxieties and concerns and work out ways to address them don’t get us all that far.
I look forward to the details of the Nous Group Study.
David.
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