Diary of my PHR


As I write this, Thanksgiving has just passed and there are but four weeks until Christmas. I’m headed out to my new home in Pennsylvania next week and am staying with my parents in their home near San Diego until then.

While here, I’m putting together an online personal health record for both of them.

They both have appointments with my father’s neurologist a couple of days before I leave and I’ve already requested a copy of both their medical records from the doctor’s office. I will pick them up on the day of their appointments, when both of them will sign the form that gives the doc’s office permission to release the records to me.

Until then, I work with what I can find out from their medicine cupboards and from speaking with them.

My father is in the early stages of Alzheimer’s disease, so he has plenty of medications that he takes, including some he takes to manage other chronic conditions he has.

As does my mother.

In fact, they each take so many medications that a kitchen cupboard shelf takes in the overflow from their medicine cabinet.

The prescriptions give me a wealth of information. Not only do I get the drug name, its reason for use and its dosage, but I also get the name of the prescribing physician. They have so many – the neurologist, their general practitioner, their dermatologist, a “heart guy” (as my father calls him), I can get all names and numbers without having to ask.

I get a list together and ask my mother if I’ve missed anyone. She lets me know that one general practitioner no longer is hers – she didn’t like his “bedside manner” so now she’s going to another physician for her regular checkups.

I’ll be coming back with my daughter the week between Christmas and New Year’s so if they have any appointments with any of these other health care providers, I’ll tag along and ask to get copies of their medical records. And I’ll do so each time I visit next year until I’m able to hit all of their docs’ offices and get copies of their records. I’ll also meet each doctor and let him or her know I may be calling periodically when I have a question about my parents’ care.

I enter as much information as I can into the PHRs I create for both of them at the free service provided at ihealthrecord.com. I also fill out the page in their PHRs that allows my sister to access their records. Ihealthrecord.com allows others users “read only” access, so I give her the log-in codes and passwords for both records so that she can add info when she’s in town and goes to doctor’s appointments with them.

My sister’s not as keen on the efficacy of using this online PHR, but I know I’ll be able to show her the online health record light as time goes on.

Having an online record for my parents will be a great Christmas for myself. I can print their PHRs out each time before I visit and have the notes within them with me. All neat and tidy.

As I get ready to start my new life across the country, don’t be surprised if you hear me softly singing this holiday season: “All I want for Christmas is my dad’s PHR.”

I’ve pretty much finished putting together a personal health record at ihealthrecord.com. The final pages of the record ask me to add information on my employer, my insurance provider, the pharmacy I use and hospitals I frequent.

Thankfully, I don’t "frequent" any hospitals right now, but I put down my HMO’s health care "campus" that’s in the town next to mine and leave it at that.

The final page asks me if I want to give anyone else "access privileges" to my PHR, which would "allow another person to view, but not edit" my information.

So I put in my husband’s name and click the "Grant Access" button and then this appears (I’ve removed private information and passwords):

You must PRINT and/or provide the information below to the individual who you are granting access to your iHealthRecord.

Instructions for [my husband] to access the personal iHealthRecord for Jean

1. Turn off any "pop-up" blocker software that is running on your computer

2. Go to https://secure.medem.com/healthrecord/view

3. Use the following information to Log In:

User ID = [They gave an ID here – which, you won’t be offended, will you, if I keep it private? Of COURSE you won’t, I’m certain of it.]

Password = [See above]

You will have access to a "read-only" version of Jean’s iHealthRecord.

 

I test it, pasting in the user ID and password given and then up pops a new window with a "quick view" of my entire record. My husband could just look at it on screen or print it out.

I could give "read only" access to anyone – my mother, my sister, my physician. My doc would have to save the user ID and password given her to my file in her office in order to read my iHealthRecord PHR online. Something I’m not sure she’d do – after all, giving her access to my PHR is my priority, not hers – especially since she already has an "official" medical record on me in her office.

But it certainly could help my husband and/or my sister in case of emergency.

I must admit – nifty!

 

I’m on the "Nutrition Support" section of the online personal health record I’m putting together at ihealthrecord.com. This section is of particular interest to my sponsors at MyHealthMyWorld, because I’m told that this section of the PHR they’ll be rolling out next spring will go into great detail about a user’s supplement use – more than your average online PHR tool.

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.

 

I’m almost done putting together my online personal health record with ihealthrecord.com’s free service. So far, I’m quite impressed and now I’m at the part where I put in my emergency contact information,

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.

But there’s room for only one. One. Better pick wisely; pick someone who is always available. Never sleeps. Doesn’t work. Always walks by my side, maybe even joined at my hip. Oh, where is my conjoined twin when I need one!

Wait. If I did have a conjoined twin, wouldn’t she also be injured were I to get in an accident?

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.

 

 

 

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.

 

 

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!!!!

 

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….

 

An interesting thing happened when I went back to creating my own personal health record last night. The free online PHR software offered by ihealthrecord.com allows me to skip over the parts of the record I’ve already filled out, so I went right to the medications page again – wanting to be sure I did check off the correct medications – and when I did, up popped another page, this one telling me about the educational programs in which I could enroll. Some of the programs are:

    Antibiotics: What You Should Know by the U.S. Food and Drug Administration (FDA) Cholesterol: Treatment of High Cholesterol With Lifestyle Changes by Medem Colorectal Cancer Screening: For People of Average Risk Age 50+ by the American Cancer Society (ACS) Immunization: Vaccinations and Your Child by Medem

And 30 more, for a total of 34 programs.The sign-up page told me to:

"Please enroll in the programs that are appropriate for you by checking the box(es) next to the program name. You will receive educational information (in the form of Secure Messages in your Message Inbox) on a periodic basis regarding your conditions and/or medications."

This is a very nice aspect of this PHR. I signed up for two programs and, while I’ve yet to receive anything — homework, fun! — in my inbox in the 24 hours since I registered, I’m looking forward to reading the offerings. Next on my creating-my-PHR to-do list: giving the record the details, the skinny, the nitty-gritty, on why I’m taking the meds I said I am.

I’ve started building my own personal health record at ihealthrecord.com, and when I log in again to continue filling it out, up pops an “overview” page that advises me to review and update my PHR at least once every six months. The page also lets me know I can print out a copy of my record at any time as well as a wallet size copy so that I “can keep your important health info with you at all times.” It also states, somewhat breathlessly:

No more filling out the clipboard! Before your next doctor’s appointment, click on iHealthRegistration at the top right corner of this page to generate a printable form that you can bring with you to your doctor’s office. I click on the links for all these copies and what strikes me most is how similar the form looks to the one I fill out whenever I visit a physician for the first time. It’s as if ihealthrecord.com has discovered that doctors will accept anything a new patient gives them, so long as it looks as if it’s a form their receptionist gave out. (”Looks like one of mine, all bland and officious. And the handwriting! Looks like typing. I like this new patient already. Send her in!”) The next page of the PHR asks typical questions: my race, primary language, height, weight, blood type, marital status and number of children.I have one child, yet I’ve never given birth, but the form at this point assumes a child means I’ve been pregnant. Whether a woman has been pregnant or given birth or not is important information for her doctor to know. I think this PHR would better serve female users by asking more detailed questions, such as number of pregnancies and if those pregnancies were carried to term.The next page asks me to list my medications. Which intrigues me – why ask this now, so soon within the PHR? I can see headings for subsequent sections of the record on the left side of the page: conditions/medical history, allergies, emergency contact, surgeries/procedures and so on. Why is ihealthrecord.com interested in my prescription list before it knows of any illnesses and treatments I may have had?

I can pick from a list of 20 common medications, from Zyrtec, Lipitor, Ibuprofen, etc. There’s also a scrolldown menu of 200 additional drugs and as I look through it, it floors me how many of them I recognize: Actonel, Allegra, Ambien, Celebrex. Detrol LA, Elidel, Flomax. And those are just the drugs that begin with the letters A-F. Note to drug manufacturers: Advertising works..

And then I start to get silly. Two hundred drugs from which to choose? What would happen if I select all of them? Will the online PHR form throw me a pop up warning: “200 MEDICATIONS! 200!? Surely you jest!!!??”

So I click on all 200, hit Enter and all that appears is a list of the meds. No questions asked. No warnings. No shrieks coming from my speakers.

But when I go to remove those drugs from my record, I can only do so one by one. One. By. One. Takes me 15 minutes.

That’ll teach me to experiment with drugs.

Next Page »