[pegleg]

This is being discussed in Canada. We're not as far along in the US as the Canadians. After reading this article, let's discuss the potential problems and assets of such a move.

In my opinion (and I might add that I am not all that knowledgeable about the topic), for people with Parkinson's (PWP) this could not be good. The very fact that we would have electronic records (accessible by patients or not) scares me. Why? Because insurance companies, employers, and other folks with no good intentions can access our data and you know the rest of the story. And please don't say "there will be laws to prevent such use," because laws are easy to get around!

Concerning the part about patient accessibility, I would be fearful that information will not be understood and will be misinterpreted by patients. PWP have delicate emotional responses that I fear this might blow them away. Again, the problem of the wrong people getting access to the info will be a problem. I can see misuse of the info in keeping or getting a job, custody status in divorces, and more.

WHAT DO YOU THINK????

Access to personal health information through the electronic health record (EHR) is an innovative means to enable people to be active participants in their own health care. Currently this is not an available option for consumers of health.

The absence of a key technology, the EHR, is a significant obstacle to providing patient accessible electronic records. To assess the readiness for the implementation and adoption of EHRs in Canada, a national scan was conducted to determine organizational readiness and willingness for patient accessible electronic records.

Methods: A survey was conducted of Chief Executive Officers (CEOs) of Canadian public and acute care hospitals.

Results: Two hundred thirteen emails were sent to CEOs of Canadian general and acute care hospitals, with a 39% response rate. Over half (54.2%) of hospitals had some sort of institutionally funded EHR, but few had a record that was predominately electronic.

Financial resources were identified as the most important barrier to providing patients access to their EHR and there was a divergence in perceptions from healthcare providers and what they thought patients would want in terms of access to the EHR, with providers being less willing to provide access and patients desire for greater access to the full record.

Conclusions: As the use of EHRs becomes more commonplace, organizations should explore the possibility of responding to patient needs for clinical information by providing access to their EHR.

The best way to achieve this is still being debated.

Author: Sara Urowitz, David Wiljer, Emma Apatu, Gunther Eysenbach, Claudette DeLenardo, Tamara Harth, Howard Pai and Kevin J Leonard
Credits/Source: BMC Medical Informatics and Decision Making 2008, 8:33

[jcitron]

I don't like it either, Peg. There's something bad about making personal information like this available online. Electronic storage is one thing, but openly available information is bad no matter "how protected" the information can be.

I work in the IT field, and data can be snarked very easily from a computer, and particularly one that is connected to the Internet. All there needs to be is a Trojan Horse installed on the local computer to capture login credentials, and then the patient is screwed. The keys are then available for anyone to access the information. This technique is used to get credit card information from personal computers. To make matter worse, if the patient accesses the so-called secure information over a public wireless connection, there's nothing to stop a thief from snooping the packets as they cross the air. After this only a radio connection.

You might find this interesting...
Way before wirless became available, all computers were networked using an Ethernet cable, and video terminals were connected using serial ports. Even though the computers and terminals were wired to the servers and mainframes, the information gave off radio waves due to the electronics within the machines. The US government noticed this, and in order to keep KGB spies from stealing information, they had manufacturers put a special shield around the equipment that was sold to the US government agencies and businesses that do business with the government. This became known as Tempest, and it's still used today. The thing is, a spy or hacker can simply eavesdrop on the information as it passes through the air to the other side of the world by using special antennas.

Anyway today there are some ways of preventing the information from being stolen by encrypting it as it travels through the air. This is done with special options on the router and computers. The problem is at an Internet cafe, such as Borders Books and Music, the connection won't be a secure one. The public connections are open just like the doors are, and the information can flow easily out as well.

What would stop a hacker, or some group from stealing this information and selling it to insurance companies and other businesses? I'm sorry to say, but I don't trust insurance companies. They could easily buy this information, and use it against anyone that needs a policy because of some technical issue they may find like something from the insurance act of 1923 for example. Other organizations or people could use this for so-called marketing purposes, which as you know is bad. In addtion, some hacker or crime syndicate could get the information and hold it ransom for some untold sum of money that needs to be paid before it's released.

So if I sound paranoid about this, I sure am. Government agencies and groups rarely seem to think beyond the grand concept of things. Yes, if we lived in an ideal world where there were no cyber-crime syndiacates, hackers, and others that would love to get thier fat paws on this information, this would be a wonderful thing.

John

[chasmo]

especially because anyone who wants to get ahold of your personal correspondence can.
Privacy without the 168 bit encyrption is largely a myth, Even that can be "back-doored" a lot of the time.
The illusion of privacy on the 'net is just that........an illusion.


Charlie

[jcitron]

Originally Posted by chasmo

especially because anyone who wants to get ahold of your personal correspondence can.
Privacy without the 168 bit encyrption is largely a myth, Even that can be "back-doored" a lot of the time.
The illusion of privacy on the 'net is just that........an illusion.


Charlie

Exactly!

Think about the recent Marshalls/TJX problem with credit cards.

John

[pegleg]

Now I'm REALLY paranoid! Should we as patients fight this with legislation or lack of supporot for any existing legislation? Does anyone know if such a bill is pending? I'll start researching thhis. Sounds highly suspicious (aka governmental Big Brother-type suspicious!)
Peg

[jcitron]

Originally Posted by pegleg

Now I'm REALLY paranoid! Should we as patients fight this with legislation or lack of supporot for any existing legislation? Does anyone know if such a bill is pending? I'll start researching thhis. Sounds highly suspicious (aka governmental Big Brother-type suspicious!)
Peg

I sure would put up a fight on this. Contact your local MP on this.

John

[pegleg]

Looks as if we may have a fight on our hands!
Found this on the Thomas site: 110th CONGRESS, 1st Session
S. 1455
To provide for the establishment of a health information technology and privacy system May 23, 2007
Here are all the actions taken thus far:

5/23/2007:
Sponsor introductory remarks on measure. (CR S6945-6946)
5/23/2007:
Read twice and referred to the Committee on Health, Education, Labor, and Pensions.

AND it even proposes a national corporation be established: "authorized to be established a nonprofit national health information technology and privacy corporation which shall not be an agency or establishment of the United States"

AND "DUTIES- The chief privacy officer of the corporation shall--

(i) ensure that the use of technologies by the corporation sustain, and do not erode, privacy protections relating to the use, collection, and disclosure of personal information;

(ii) ensure that personal information contained in any records maintained as part of the technology and privacy system is maintained in full compliance with fair information practices as contained in the Privacy Act of 1974;

(iii) evaluate legislative and regulatory proposals involving the collection, use, and disclosure of personal information by the Federal Government;

(iv) Conduct a privacy impact assessment of proposed rules and procedures of the corporation on the privacy of personal information, including the type of personal information collected and the number of individuals affected; and

(v) submit annually to Congress a report on activities of the corporation that affect privacy.

(2) OTHER OFFICERS- The corporation shall have a president, and such other officers as may be appointed by the board of directors, who shall be compensated at rates fixed by the board and serve at the pleasure of the board. No officer of the corporation shall receive any salary from any source other than the corporation during the period of employment by the corporation.

(e) Financing- The corporation is authorized to issue bonds, debentures, and such other financings or certificates of indebtedness as the board of directors determines appropriate to carry out its duties under this Act."

[adamsmith06]

Some great discussion is going around in this thread.

Just like any other record keeping, moving patients' records from paper and physical filing systems to computers and their super storage capabilities creates great efficiencies for patients and their providers, as well as health payment systems.

But efficiency isn't the only benefit. For individual patients, access to good care becomes easier and safer when records can easily be shared. Important information such as blood type, prescribed drugs, medical conditions and other aspects of our medical history can be accounted for much more quickly. At the very least, an existing electronic medical record (EMR) can save time at the doctor's office. At most, quick access to our records can be lifesaving if an emergency occurs and answers to those questions are needed during the emergency decision-making process.