October 2006


So my husband, daughter and I are in the process of moving from California to Pennsylvania. They have been in Pennsylvania since early July, staying with my husband’s parents while he looked for work. Our daughter is in school now and my husband recently started his new job.

I stayed in California to sell the house and work, retaining the all-important health benefits.

Our California house is now in escrow and we close November 17. We came across a house we both liked during my last visit to Pennsylvania in mid-October and we made an offer. We got it and we close escrow on Pennsylvania House Nov. 27.

What does this have to do with personal health records or medical records, you may ask? Bear with me. I’ll get to that.

So forms and signatures and paperwork with Social Security numbers, bank numbers and what feels to be a bajillion forms of various identification vehicles have been crossing the country via the U.S. Post Office and the Internet.

Can you say "vulnerable to identity theft?"

And what should happen as well last week is that I received no mail for two days in a row. Not even a political piece shilling for a candidate. Nary a "specials at Albertson’s" flyer.

Let alone our checking account statement.

Which. Should. Have. Come. By. Now.

The checking account statement which in less than three weeks will carry the proceeds from the sale of our house here in California which is, basically, a huge portion of our life’s savings

We have one of those condo-like mail boxes for our development, where each house receives its mail in one of eight mail boxes housed in a larger box. The mail deliverer opens up the back of the larger box and places the mail in the appropriate slot for each address.

I checked out the back of our box and what should before my eyes appear but the back door of the box broken into and folded back a schmear.

Just enough for a hand to reach in and take mail for us and one other unlucky homeowner.

So I checked USPS.com to see what I should do about possible mail theft.

First step: "Go to your local post office and report it."

The second day of no mail was a Saturday. I got home to see no mail after 5 p.m.

So I spend Saturday night and Sunday hyperventilating. Perhaps our mail wasn’t stolen; perhaps we just didn’t receive mail for two days. It could happen, I hoped.

I also had put in our mail forwarding request to Pennsylvania House online Thursday, the day before my mail stopped waiting for me in its box. While I requested mail forwarding start Nov. 17, perhaps someone got the date wrong and started forwarding our mail Friday.

Nope.

I went to the P.O. first thing Monday. Even talked to the guy who delivers our mail. He hadn’t started forwarding our mail so chances are if we didn’t have mail for two days, someone took it.

Strangely enough, I was quite calm. At least I knew. Knew that mail should have been there and that since it wasn’t, I have no idea if it was some neighborhood kid pulling a prank or an experienced identity thief, I had things to do. Pronto.

Our mail will be held at the Post Office until the box is fixed. I’d already called my boss at work to let her know I would be late Monday to check this out. I’d spoken with my husband Saturday night – and many times since – and told him to watch his credit card statement online carefully and to notify the credit reporting agencies of possible theft. I’ve also done the same.

And as soon as I could Monday I went to my bank to close our checking accounts and open new ones. And give our escrow officer the new account routing number for the electronic transfer of our house sale proceeds.

Everything at my bank was done electronically. The manager looked up our accounts and closed them and gave us new ones. He faxed a form to my husband for his signature on our joint account. I have new, temporary checks until my new ones come.

And we were done. Accounts secure again. We can even continue using our same debit cards.

I’ve already checked my accounts online and my old accounts are gone, replaced with our shiny new ones.

Electronic banking records, I love you!

And this is where electronic health records come in, for if being able to take care of such minutiae electronically with the help of someone who has the authority and the security clearance to do so was that easy for our banking records, I can’t wait for my medical records to go online.

I slept hardly at all Saturday and Sunday. Monday night? A quite restful full eight hours, thank you for asking.

 

 

Don’t get me wrong, I’ve really taken a shine to my online personal health record. It’s convenient. It’s easy. There’s little I can say bad about it. In fact, there’s really nothing bad I can say about it.

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:

Computerized medical information systems are at the start of what promises to be a rapid evolution. We are still in a position to look ahead and consider the promise and pitfalls of such systems as we design and deploy them. We need not feel wedded to the structure and processes of current systems. …

In order for electronic medical records to eliminate the fragmentation of health information, be universally accessible, and guard patients’ privacy, systems must be built according to public standards and controlled by patients. 

 

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::

Here is my dilemma. I want my notes to be strictly confidential but readily accessible to those who will need them. Electronic notes….set alarm bells ringing…. I am not a technophobe, but I am wary of giving out personal financial information over the internet, and the thought of my entire medical history floating somewhere in cyberspace doesn’t fill me with confidence. Perhaps I have seen too many films about ingenious hackers.

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

 

I’m at the point in my personal health record at ihealthrecord.com where I need to list the immunizations I’ve had over the years.

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.

 

 

Plans are afoot at MyHealthMyWorld.com (the sponsors of this personal health record blog). The co-op’s executive board are now building a free online personal health record of their own, with the goal to launch it in mid- or late-winter 2007.

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.

 

 

Let’s say you have just moved across country with your family. Let’s say you’re moving in to your new home and, while performing some minor repair on your house, you cut your thumb badly with a small saw.

So you head to the emergency room or urgent care center. You don’t have your medical records with you – the last thought in your head as blood spurts from your thumb was to hunt down the medical records still packed away in a box in the garage – but your spouse isn’t worried, for she has the “card.”……..

Read Jean’s full article located at articles at MyHealthMyWorld (link opens a new window).

I’ve received a few e-mails — labeled "an important private message" — from IHealthRecord.com ever since I registered with the service to build an online personal health record. I’ve received three messages from Medem, IHealthRecord.com’s parent company, messages I signed up to receive when I enrolled in the company’s educational programs. I chose to receive information on cholesterol.

I liken these messages to "notes from my doc," in that all three of the messages I’ve received have basically told me I’m at risk for heart disease (if I don’t already have it, what with the high cholesterol and all) and then it gives me links to online tools to help me lower it. I’ve received three messages so far: "Understanding Cholesterol," "Cholesterol and Lifestyle" and "Cholesterol and Your Diet."

The last one, on diet, talks to me in great detail, but in very easy-to-understand language, about eating more fruits and vegetables, eating lean cuts of meat, staying away from fatty dairy products, etc. It tells me I need to convert to a "Therapeutic Lifestyle Change (TLC)" diet.

All well and good.

But then it sends me links to online tools that tell me how much of these fatty foods I can eat. After filling out my age, height/weight and activity level, the calculating tool tells me how many calories I should eat, how many grams of saturated fat I should limit myself to each day as well as my total daily fat gram allowance.

Nifty!

Another link asks me about my shopping habits: Do I do the shopping in my household, yes or no? (My real answer: Only when my husband is sick in bed with the plague, that is how much I hate to grocery shop.) Do I go with a list, yes or no? (Real answer: Of course! A list makes the awful experience go faster. See first answer, above). Do I shop according to a) nutrition b) taste or c) convenience? (Answer: Convenience is my mantra because I Hate. To. Cook. To me, the only reaseon we have a kitchen is for the resale value of our house.

So I click on a link to a "TLC Diet Daily Food Guide," one that tells me in detail how much of everything good and wholesome and how little of everything bad and loathsome I should eat. A list. A wonderful list. List, how I do love thee.? List, thou art my savior when I walk through the valley and the shadows of the Albertson’s food aisles.

Yet, alas and alack, the list does not allow for much convenience food. No, it lists foods that must be peeled. Foods that must be chopped. Foods that require, how shall I say it? Ah, yes, here’s the word — foods that require work. Work that must be done in a kitchen. Work that will take several minutes to do until I can put food to mouth. Time that I’d rather spend painting the walls of the attic or digging up a stree stump in the back yard, that’s how much I hate cooking.

Healthy Choice Frozen Dinners, take me away!!!!

 

I’ve been asked to put a request out here. MyHealthMyWorld.com, my sponsor, is thinking of getting others who feel it important to take charge of their health care and their medical records – to start blogging about their own experiences.

To put it in words better than I wrote above, let me quote Geoff Purdom, Ph.D, one of the board members of the MyHealthMyWorld co-operative. He likens this idea to creating a "community of health diaries – writers sharing their experience for the common good."

The different blogs – provided free by MyHealthMyWorld.com and set up for you in case you have no experience blogging – would talk about each person’s specific situation. For example, someone may write about dealing with the health care system while caring for a child with ADD. Another could blog about his diabetes treatment and how it affects his lifestyle. Another could write about her progress as she recovers from kidney surgery or chemotherapy. Another could post regularly about his challenge to stop smoking and lose 20 pounds at the same time.

Actually, just about anything could be written about because we all have health issues. Even if we don’t have HEALTH ISSUES, we still deal with our health each and every day on some level, even if it’s just a promise to ourselves that we’ll eat more fruits and vegetables, or exercise three times a week or take that tap dancing class we’ve been wanting to….. However the most likely value is to people who would like to either create a record for themselves to help their own convalescence or if you think you would like to share your experience of dealing with a chronic oor other health issue to help others.

If you’d like to be a part of this self-help community, if you have ideas about how you think this community should be run, please contact Geoff at myblog@myhealthmyworld.com. It is free and easy to setup.

I look forward to your blogging company.

 

So I was Google-ing some other blogs to see if anyone else writes about personal health records and I came across this one by Aniruddha Malpani, MD, an IVF specialist who happens to practice in India. He’s described on the blog – where he’s actually a guest blogger; the blog where this post is located is not his – as an “ardent patient advocate.”

That’s putting it mildly.

Dr. Malpani believes patients should be the one to own and control who has access to their medical records. Period.

What’s more, he’s passionate that patients should own and control their medical records via interactive (or online) personal health records.

He writes:

The reason the healthcare system today is sick is because it is so doctor-centric. The best way to heal the system is by putting patients at the center of it; and the most efficient way of doing this is by allowing patients to own their PHR - personal health records. The web allows us to provide everyone with a free PHR; and this is a major business opportunity, as healthcare undergoes a dramatic change over the next few years. PHRs are likely to be a major catalyst , because they will allow patients more control over the healthcare they receive. Patients are the largest untapped healthcare resource and armed with a PHR, they won’t feel so powerless any more !

Can you hear my heartbeat pick up its pace? I’m falling for this guy. He continues.

For example, let’s see how much better a visit to your doctor could be if you had an online PHR.

One day before your appointment, you receive an automatic email reminder. You review your personal health records on the internet, and take a printout which summarizes your past medical history and your medications. An intelligent program on the site asks you questions related to your headaches, which you can review and answer. It also guides you about what questions you need to ask your doctor, and you can print these out to take with you to your doctor. It also provides you with more information about headaches and self-management options.

 

I’m going to the get the vapors in a minute! Speak to me the words I long to hear, Dr. Malpani!

And so he does:

…. [I}deally the health record should be the patient’s story – from the patient’s point of view ! A patient-owned health record (which includes the patient’s personal views and social background as well) can enable a true partnership and collaboration between patient and doctor.  

 

 

I tell you, I’m swooning:

How can we get enough patients to keep a PHR? We need to provide them clever incentives to do so ! We can use either a top-down approach ( for example, health insurance plans can require their subscribers to keep PHRs ; and provide a discount for those who do so faithfully ); or a bottom-up approach – by creating communities of empowered patients.

There’s a lot more to this post, a lot that makes a ton of sense. I hope he’s sent this letter to ’s legislators. To CEOs of HMOs. To the deans at Harvard and Stanford medical schools, et al.

There’s a , a lot that makes a ton of sense. I hope he’s sent this letter to ’s legislators. To CEOs of HMOs. To the deans at Harvard and Stanford medical schools, et al.

 

 Sending you tons of blog love, Dr. Malpani. Ooodles of love.

Kisses,
Jean

There’s a , a lot that makes a ton of sense. I hope he’s sent this letter to ’s legislators. To CEOs of HMOs. To the deans at Harvard and Stanford medical schools, et al.

 

There’s a , a lot that makes a ton of sense. I hope he’s sent this letter to ’s legislators. To CEOs of HMOs. To the deans at Harvard and Stanford medical schools, et al.

 

I wrote recently about creating a personal health record (PHR) for my parents. My plan is to gather information – the names, addresses and numbers of their health care providers, the medications they now take, the treatments they’re undergoing and why – and place them in an online PHR. Since I’m using a free online PHR service provided by ihealthrecord.com for myself, I’ll create one for both parents there, as well.

But it’s not as if my parents haven’t already created PHRs for themselves. My mother is the main caretaker of the two of them, since her health is marginally better than my dad’s (my father is in the early stages of Alzheimer’s disease). She’s the one who writes their doctor appointments on the calendar in the kitchen and she also notes them in a purse-sized planner booklet I got her for that purpose in January.

She also keeps track of her treatments and my dad’s in her head.

"You’re father’s checkup with his neurologist went well. His memory is stable. I’m having some basal cell spots removed from my face Monday. My friend Betty is driving me there and back. Your dad goes to the cardiologist in a month."

And that’s it.

It works for them. For now. Until just two years ago or so, my mother was the kind who could keep dozens of appointments and things to do in her head. It’s only recently that’s she’s accepted the aid of a dayplanner, and she uses it happily, for she accepts that while her memory is sharp, most days, it’s just that: most days. She knows she’s occasionally forgetful and needs some help.

So, for now, between the wall calendar, the dayplanner and reminder calls from their health care providers, they’ve never missed an appointment. My father is still sharp enough to remember all the medications he must take – and he takes plenty! (My mother watches him closely and sometimes has to nudge him, but she does it sweetly, as if she’s the one who needs the reminding: "Honey, I think the doctor said you had to take the pink tablet right before dinner, is that right?")

But they have so many appointments. And they take so many pills. And between them they grace the waiting rooms of at least 10 different providers regularly.

So they each need online PHRs. To help me.

 

 

 

The building of my own online personal health record continues.

I’m at ihealthrecord.com’s "Add Conditions and Patient’s Medical History" page, where I’m asked to "select current and past Conditions and Diagnoses. You do not need to list Allergies here. For Allergies, please use the Allergies section of the iHealthRecord."

Well, shoot. You mean you can wait to hear about how penicillin makes me, as my mother puts it — describing the one and only time I received the wonder drug at age 2 — "swell up like a blowfish"?

Fine; you’ll have something to look forward to.

The medical history page lists a cornucopia of different diseases, conditions, habits and psychiatric disorders, from the serious:

    Polio
    Lung Cancer
    Alzheimer’s disease
    Syphilis
    Stroke

to the, well, not-so-serious:

    Warts
    Acne
    Athlete’s Foot
    Birthmarks

as well as what I would call "bad habits that could lead to a serious disorder":

    Smoking
    Drinking
There’s no listing on this page of what I would call "good habits that might mitigate the ‘bad habits that could lead to a serious disorder,’ or at the least allow you to say ‘Yes, well, I may smoke, but I run 10 miles a day.’"
 
Next comes a "Females Only" section that offers the following for consideration: abnormal pap, discomfort with sex, tubal pregnancy, bleeding problems, breast mass or cyst, contraception, cyst or abscess of vulva, endrometriosis, fibroids, irregular periods, menopause, miscarriage, nipple discharge, ovarian cysts, post-menopausal bleeding, postpartum depression, pregnancy, toxemia.

Next is the "Males Only" section which lists (are you ready?): prostrate problems.

And that’s it for the fellas.

Now, I ask you, is that fair?

Be a woman filling out this page and all the ob/gyn appointments, all the mammograms, all the pap smears, all the visits on all of the examining tables with the all of the stirrups and all of the "could you scooch forward just a little bit more please," they all come rushing back.

But if you’re a man: "Prostrate problems? Nope. Never. Nada. Not me. On to the next page."

Not fair, not fair at all….