Turns out some folks in the know – folks who are privacy activists – think having an online personal health record could actually go a long way to protecting you.

The Privacy Rights Clearinghouse (PRC) has a nifty little primer on the Health Insurance Portability and Accountability Act (HIPAA), with a subfocus on HIPAA’s Privacy Rule. HIPAA was enacted by Congress in 1996 to set a national standard for the electronic transfer of health data. The Clearinghouse is none too hopeful that HIPAA will "restore your confidence that sensitive medical data is a matter between you and your doctor." Instead, according to the Clearinghouse folks:

So what’s a person to do? The Clearinghouse lists several tips for ensuring your medical records remain private, including this:

At first glance ihealthrecord.com’s section on supplements looks insubstantial. The page asks you to check off some nutritional supplements, such as Pediasure (for children) or Ensure (for adults). You can also add comments about your nutritional peccadilloes or foods that don’t agree with you, so I put down that I’m "allergic" to avocado, zucchini and squash. (Let’s just say I go into gastric distress and leave it at that.)

In addition to supplements offered such as Ensure, Advera, and Glucerna there are also blank boxes where I can add some of the vitamins and other supplements I take. I fill these in and hit "save."

Then – since the page took me no time at all to complete – I click on "edit" just for the heck of it and what should appear but an additional page for each supplement I added.

For example, I filled in one of the boxes with a brief blurb that I take a half tablet of iron every five days or so. The "edit" page for this box lets me to go into a lot more detail, allowing me to answer such questions as "form" (tablet, capsule, gel, cream, etc.); "frequency" (daily, weekly, and so on); "directions" (take with food), and so on. The "edit" section also includes spots that allow me to check off if I’m currently taking this particular supplement, when I started taking it and when, if ever, I stopped taking it. I also get a big blank box for any "additional comments" I might wish to add.

I like the opportunity the record gives me to go into considerable more detail about my supplement regime. But if I hadn’t thought that the "Nutrition Support" page looked less than substantial at first and if I hadn’t then wondered if perhaps more meat was hidden behind this page’s less-than-obvious "edit" button, I probably would have left the information I first added to that section’s front page as it was. That is, sketchy. It would be nice if the page was more obvious in letting me know I could add considerable detail about the why, the how many and the how often.

But here is where I come across what to me is a huge – I mean HUGE mistake – there’s only room for one contact.

Naturally, I put down the name and phone numbers of my husband. But he’s currently in Pennsylvania while I finish up my employment here, pack up the house and close on escrow. I’ll be in Pennsylvania the week after Thanksgiving. What if something happens to me between now and then? My husband is about 3,000 miles away. Plus, what if he’s unavailable? There’s a three-hour time difference. He turns off his cell phone at night; his parents’ are hard of hearing and don’t hear phones ringing downstairs from their room (they also turn off their bedroom phone at night).

I could put down my mother. Or my father. But they live two hours away and my mom doesn’t drive at night and my dad doesn’t drive at all anymore. My sister? She’s in Arizona; I’m in California – you do the Mapquest.

So I’m right back where I started. Only room for one. Just one.

Sheesh.

Even Noah knew enough to leave space enough for two.

Except……

I must admit, I am worried. I hear more and more about how our health care system is going to go online and electronic with our medical records. Even our government has plans to go with online records, and is planning on having a Nationwide Health Information Network, a system that will connect all patients’ records to health care providers, insurance companies, pharmacies and laboratories electronically. The goal is to have it up and running by 2014.

But that worries me. As we’ve gone electronic and online with so much of personal information – our banking, our shopping, our Netflix preferences – I also hear more and more of breaches of online security systems.

As  one example, just this past May the records of as many as 26.5 million veterans had their names, birthdates, social security numbers, and their disability records stolen from the home of a Department of Veteran Affairs employee.

This makes me very nervous. Oh, so nervous.

The solution, of course, is better systems with better security. And the folks who provide this security will have to upgrade their systems constantly, always trying to stay ahead of the hackers and thieves who seemingly have little better to do than work to overide security and "get in."

Three gentleman in Massachusetts – two of them from Children’s Hospital in Boston and the other from the Massachusetts Institute of Technology – have a nice report in the BMJ online and they say this:

Still, I’m nervous. Online systems are built by humans and can never be perfectly secure. Someone, somewhere will take it upon himself to hack in.

Or as one women, commenting on that same BMJ article, put it so well regarding the conundrum between the ease and efficacy of online records and their inherent risk to patient privacy::

I’ve seen those films too. Nervous I am. Nervous.

Since I was a child when most of them occurred I need to go back to that old standby of a personal health record – my mother.

My childhood general practitioner is no longer alive and so the voluminous health record he compiled on me from age 3 until I left my parent’s home – and their health coverage – at age 23 is no longer available to me (yet another great reason to create my own online health record).

I once saw the medical history my GP kept on me. Good golly, with 20 years of annotations on all my visits and the care he gave me, the thing looked two feet tall.

And my mother remembers most of the major things within it.

My age when I had my surgery to correct my crossed left eye. The year I sprained my wrist leaping sloppily over the horse in gymnastics. The day we discovered my penicillin allergy ("you swelled up like a blowfish"). She doesn’t remember the dates of my immunizations, but she remembers which ones I had.

The woman is my walking, talking, hugging, personal health record.

My online PHR, while it never tells me it loves me as I log out, does offer me 26 immunizations from which to select, from Anthrax to Yellow Fever, with even the Plague thrown in for good measure. There’s also a section on "combination vaccines" – the Diphitheria/Tetanus/Pertussis (DtaP), the Measles/Mumps/Rubella (MMR) and the Tetanus and Diphtheria booster (Td).

So I check off the immunizations I know I’ve had and then I call my mother, also known as Keeper of All The Important Information About My Childhood Health History.

"Mom, did I ever get the chickenpox vaccine?"

"Yes, you did."

"What about for the mumps?"

"Nope, missed that one. We were about to have you get it, but then you got the mumps. Don’t you remember? You practically chewed your inner cheeks off for some reason. Dr. Freeman couldn’t figure out why, but you told him it somehow made you feel better if you gave the sides of the inside of your mouth a quick nibble every now and then. You even said nibble. I was so proud of you at age 6 that you kn.."

"Mom! That’s OK. What about the measles vaccination. How old was I?"

"Five. Oh, and before you ask me, we found out you were allergic to penicillin – you swelled up like a blowfish; if I’d stuck you with a pin, you would have exploded – three days after your third birthday. I remember it so well because, as worried as we were about you – you were so very sick – you looked so cute. So cute. So chubby cheeked after that shot. I felt bad for thinking you looked so cute, but, well, you did. Sicker than a dog, but the cutest little thing. And as soon as you got the antidote or whatever they called it – the thing that fixed your reaction to the penicillin, you well, you ‘deflated’ quickly. And we were so happy."

That’s my mother – the human memory chip.

Like many free PHRs already online, MyHealthMyWorld.com’s will allow you to build a personal health record for yourself and family members. It will allow you to list all medications, all treatments, all diseases and diagnoses from birth to present. Everything you or someone who is caring for you would want to know and have handy in one place.

Yet MyHealthMyWorld.com’s PHR will offer users something extra. Many of us, myself included, take non-prescription supplements of one form or another. Vitamins. Herbal formulas. Compounds and mixtures. In other words, things not prescribed by your physician or necessarily purchased over the counter at your local pharmacy.

For example, currently I take vitamin E, calcium, Omega 3 fish oil, and half an iron tablet every five days, plus some other supplements. A friend I know drinks protein shakes every day to help him bulk up. Another friend swears by the black cohosh she’s taking to help combat menopause-related night sweats.

I’m building my own PHR at ihealthrecord.com and while there’s a space on the medications page to list "other" – which I suppose I could use to list my supplements – there’s no section of the record that specifically asks me to list my supplement regimen. I don’t think of my vitamins and supplements as part of my health record – our health care culture in this country never trained us to do so. So unless I was specifically asked to list my supplements, I probably wouldn’t.

In fact, I didn’t. Two weeks ago when I filled out the "list your medications" page of my ihealthrecord.com PHR, I didn’t think to list my vitamin E or fish oil capsules or any other supplement in the "other" section. After all, they aren’t "medications" in the way I’ve been raised to think of medications. It wasn’t until Geoff Purdom, Ph.D., of MyHealthMyWorld asked me to check did I even think about them.

I imagine most people wouldn’t either. Which is why being able to certainly would be a good idea.