Building a personal medical database

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Building a personal medical database

New products help patients take charge of their health and medical

history by organizing their records, but there are privacy concerns.

http://www.latimes.com/features/health/la-he-

records10dec10,1,1863941.story?coll=la-headlines-health

By Jan Greene, Special to The Times

of Bakersfield was traveling on business in

Philadelphia a few years ago when she developed a terrible pain in

her abdomen. Doctors at a major medical center there kept her

overnight and carried out a battery of tests on her heart. The tests

came up negative.

When she got home, went to her regular doctor, and an

ultrasound exam found a mass in her kidney. A CT scan showed a

kidney tumor, and she was immediately scheduled for surgery to

remove it before the cancer spread.

- How to assemble a health record

believes she saved precious time in her treatment because she

knew enough to ask for a copy of her medical records from the

Philadelphia hospital and show them to her doctor at home --

eliminating the need to repeat all those tests. " Having copies of my

cardiac tests saved all that time, " she says.

, a database specialist, is unusual -- long before the tumor,

she'd gotten in the habit of asking for copies of her records and

meticulously tracking her vital signs on a spreadsheet to share with

her doctor, who monitors her high blood pressure.

Although not every doctor would want that much detail, nor does

every patient have the patience to accrue it, most people could

benefit from routinely asking for a copy of their lab results and

doctor's reports, says Lansky, senior director of the health

program for the Markle Foundation, a nonprofit that promotes

application of technology to health problems.

Such a personal health record, kept either on paper or

electronically, can help patients stay aware of their health,

particularly if they have a chronic illness such as diabetes or

hypertension. It can help a person weed out mistakes in the

information, avoid unnecessary repeats of tests and ease the move to

a new town or doctor's office.

And anyone who takes care of another person, such as an elderly

relative or child with a health problem, can use the records to help

advocate for the patient.

Health insurers such as Aetna have helped drive this trend in hopes

that patients would pay closer attention to their health. They were

among the first to offer some online access to medical claims.

Kaiser Permanente -- unique in being an insurance company and a

healthcare provider -- is probably the furthest along, offering

members not only access to an abbreviated version of their medical

records but other services too, such as the ability to e-mail

physicians and set up appointments online.

Companies such as Wal-Mart are starting to offer their employees the

option of saving personal health records as well.

Many people don't have such access, however -- and there's a

downside, in any case, to using an online personal health record

provided by an employer or insurer, even though it's free: If you

leave that job, you may not be able to maintain access to the site.

So people wanting a more detailed record may seek out a solution on

their own, and today, they have a wide array of options.

Over the last few years, dozens of personal health record models

have hit the market. Some include software that allows people to

track their health on their own computers at home or to put it on a

thumb drive to give to a doctor. Others are based online, using a

secure server that a patient, or a relative or doctor with

permission, can sign on to from any Internet-connected computer.

Before taking the time to type a lot of personal history into a

product, consumers should think a bit about what they want from a

personal health record.

They should also think about how private their records will remain.

The products:

With at least 200 personal health record products on the market,

there's a wide array of designs. Many of them simply allow the user

to fill in information by answering questions, such as: What chronic

illnesses do you have? What medications are you on? What are the

doses? Do you have any allergies to medications or other things?

Others are focused more specifically on people with a particular

chronic illness or an interest in making a particular behavior

change, such as diet or exercise. These would allow the user to

regularly fill in information such as a blood pressure reading or

number of minutes walking that day. Some products allow you to plug

in an electronic device and download the information. Most sell for

less than $50 or involve a small monthly fee.

HealthFrame, for example, is a $40 software product that allows the

user to insert information on medical history, expenses, charts on

tabbed pages. It has a calendar to track appointments, a format that

can be shared with some doctors' electronic systems and a sync for

an iPod to keep key medical information with you so it can be

accessed in an emergency ( www.recordsforliving.com/ HealthFrame).

There are also some free online products, such as one available at

WebMD's site. Using pull-down menus, it allows a consumer to answer

questions about illnesses, medications and surgeries, and maintain

that information on the site at no cost. It is, however, less

detailed than some other products.

Surveys indicate that patients are most comfortable with a product

offered by their doctors. One, called iHealthRecord, is offered on

100,000 physician websites, according to Medem, the organization

that developed it. Medem, which is supported by the American Medical

Assn. and other doctors' groups, says the benefit of iHealthRecord

is that it is secure, but a patient can give online access to

anyone, including family members, doctors and emergency personnel.

At this point in tech history, patients will have to enter much of

this information by hand or scan doctors' reports into their

computers. But some day, medical information experts hope, doctors

and hospitals will use compatible systems that will allow lab

results and doctors' reports to be automatically added to patients'

online records.

With this prospect in mind, Microsoft has unveiled its free

HealthVault online service, which can hold different types of

medical records in different formats. However, many doctors and

hospitals are not quite ready to provide that information, because

of technical barriers and the simple cost of doing it.

Why keep your records?

- How to assemble a health record

Knowing why you are collecting the information will help determine

what kind of personal health record you choose: Someone with

diabetes will want one that can easily track blood sugar readings

and offer the doctor easy access to them, whereas someone simply

wanting to collect the family's medical records on the home computer

might want software that tracks multiple people's health records.

" An electronic PHR is basically just a better shoe box, " says

Downs, a personal health record researcher for the

Wood Foundation. " If, right now, you have a shoe box of

copies of bills and various records, this is a way to have it

organized in a much more manageable way. "

What to get and how:

First, gather your medical information. The American Health

Information Management Assn., a professional organization for people

who maintain medical records in the healthcare industry, recommends

that at a minimum consumers keep names and addresses of physicians,

health insurance information, dates of significant illnesses and

surgical procedures, current medications and dosages, allergies and

sensitivities to drugs or materials such as latex, results from a

recent physical exam, and eye and dental records.

That may not be as straightforward as it seems. Doctors' offices and

hospitals aren't used to consumers wanting such information

routinely and may balk at the time involved in copying a large

chart. One strategy suggested by the health information association

is to do it piecemeal: The next time you see the optometrist or your

primary care doctor, ask for your most recent records.

In fact, federal law guarantees individuals the right to get a copy

of their medical record, although it might require a written

request. The doctor or hospital can charge a reasonable fee for

copies, such as 10 cents per page.

There are other places you should check when compiling your medical

information. The Medical Information Bureau, an arm of the insurance

industry, maintains a database of information about people who have

applied for health or disability insurance in the previous seven

years. The bureau, in accordance with a federal law, allows

consumers free access to their file once a year; call toll-free

(866) 692-6901 to request it.

Keeping records safe:

Consumers should know that there are serious limitations and privacy

concerns when considering handing over their medical history, says

Dr. Deborah Peel, who heads a consumer group called Patient Privacy

Rights in Austin, Texas. For example, some websites offer to

maintain an individual's data for free but will then sell the

information to marketers who want to advertise to people with

certain health conditions.

Privacy advocates also worry that with spotty federal safeguards on

Americans' health data, personal information could easily be used

against them in a hiring situation or application for health

insurance.

" For 30 years, I've been listening to my patients tell me about the

ways they are harmed when employers get a hold of their sensitive

medical records, " says Peel, a psychiatrist. She recommends that

consumers not use an online personal health record offered by an

insurer or employer: " It's impossible to tell how many times your

records have been disclosed or to whom. "

Insurance companies argue that they are simply giving easy access to

information they already possess and protect, in hopes that members

will use the information to improve their health. Legislation is

pending in Congress that would give consumers more ability to

control how their information is used.

Keeping medical records at home in a file makes it simpler to ensure

their security, and maintaining a spreadsheet or other records on

your computer just requires periodic backup.

But as soon as medical information gets shared through a website, a

thumb drive or a magnetized card, security becomes a concern.

Health record experts say consumers should treat their medical

information with the care they use with their banking records. It's

vital to read the fine print when considering a vendor's offer of an

online health record. " " Know what they can do with your data, " Downs

says.

Even if you don't go online, Lansky says, you can begin to compile

medical information on paper or on your computer and take more

responsibility for your own medical history -- which, after all, is

languishing in paper records at doctors' offices and hospitals.