My Own PHR Journey


I mentioned in my last post the terrific health insurance my husband’s employer provides us. My husband works at a major medical center in Pennsylvania and so as long as we go to a physician within the network we have no out-of-pocket expenses.

I’m going to repeat that (I like to write it): We have no out-of-pocket expenses.

So I’m a middle-aged woman in the middle of the health care candy store.

I’ve made dental appointments. I’ve made eye doc appointments. And I’ve made an annual physical appointment for myself, an appointment that is long overdue.

I went to the first part of the appointment last week.

You read correctly – the first part of the appointment.

The physician I chose has a practice far from the medical center but close to our home, yet I’m slightly regretting my decision, for my new general practitioner first wanted to see me, have a little chat, have a little "getting to know you" one-on-one before she performed the actual physical. She also scheduled me for a mammogram (at a nearby facility), and some blood to be taken (also at a different nearby facility) so that she’d have the results back in time for the real physical appointment two weeks from our first.

So I’ve been a road warrior of sorts, driving hither and thither going to my appointments to be pricked in the arm (blood work) and smushed in the breasts (mammogram).

But, I keep telling myself, We have. No. Out-of-pocket. Expenses.

And I like my new doc. We laughed. We showed each other pictures of our kids. We bonded.

And the mammogram facility gave me my results while I waited. Nothing suspicious said hi on the X-ray.

It was a good day.

Except.

EACH place asked me to fill out a form. Many forms. Address. Age. Social Security Number. Health Insurance name and number. And, since he’s the one carrying the insurance through his employer, my husband’s name, birthdate, SSN. The same damn information each and every time.

It didn’t matter that I had the printout of my personal health record with me. It meant nothing to these medical offices. Nothing.

Yet it wasn’t a total loss. I had everything with me, neat and tidy. I could copy it from my PHR printout to the office’s form. Easy.

But if these offices had been connected electronically — if they had had an electronic medical record system – it would have been better.

We’re pretty much settled in our new Pennsylvania home, my husband, daughter and I. So far, this move has been the best thing we could have done for our daughter. She’s surrounded by grandparents (my husband’s folks), his sister, her husband and their children, as well as her husband’s parents, sister and her children. Lots of family folks around and our daughter is drinking it up. She’s been a part of us for two years now and to go from no family to having two great parents (if I say so myself) and a loving extended family in those two years has given her a good dose of security and belonging.

And the fact that we’re together again as a family in our own home…I’ve seen a sea change in my daughter. Her behavior has settled down, she’s funny, affectionate and has matured exponentially in the five weeks we’ve been together in our new home.

Also, with my husband’s new job we have awesome health insurance. The kind that makes me dance a gig at my daughter’s teeth cleaning when the dentist tells me I can have 10 of my daughter’s lower teeth – five on each side – sealed plus give her a flouride treatment at no cost and no co-payment.

That my kind of health insurance.

Our daughter lived in a children’s home near Moscow, Russia, for about eight years – almost all of her life. The Russian physician who gave her her final examination before we got her U.S. Visa/Passport two years ago told us she had had rickets when she was 3 – he could see it in the concavity of her torso. Russian winters are long and fruits and vegetables in orphanages are rare, so rickets says the WebMD.com article, "is rare in the United States but is not uncommon in certain areas of the world."

"Give her plenty of sunshine, good food and exercise and she’ll be fine," the Russian physician told us.

And she has been. More than fine. She’s very athletic. She’s gained upwards of 25 pounds and 6 inches in height since Christmas 2004. Her skin glows.

So we figure now’s the time to get that X-ray of her torso her pediatrician requested back in September to check on her progress. Not to worry, my husband told me, here’s the prescription form and the request should be in her medical record in the doctor’s office.

So I make the call.

"My husband brought our daughter in in September for a healthy child checkup and to get more immunizations for school. The doctor also told us to bring her in later for an X-ray to check on her rickets."

Now I can only assume she was reading the WebMD article referenced above, especially the part about rickets being "rare in the United States" because I could swear I heard her heart race through my cell phone.

"RICKETS!!!! RICKETS??????!!!!! Did you say RICKETS?"

"Yes, rickets. We keep her in a closet all day and feed her just McDonald’s Happy Meals."

Well, that’s what I wanted to say, just to see how many hiccups the nurse would have. Instead, I told the truth.

"My daughter lived in an orphanage in Russia the first eight years of her life. She had rickets when she was 3. Her pediatrician just wants to see how well she’s doing. It should be in her chart."

"Oh, yes, I see it now. Sorry about that. I should have read her records before I called you. I apologize. How does Wednesday at 10 sound?"

Which brings me a fine segue to mention medical records and personal health records. I put together a personal health record for my daughter at ihealthrecord.com. It includes notes on all her doctor’s visits since she’s been home with us. It also includes notes on what the Russian doctor mentioned about her rickets. I will take a print-out of her PHR when we go for her X-ray.

And after my experience setting up that appointment, a new truth came to me: Personal health records and medical records – electronic or otherwise – do no one no good if you don’t read them.

Take them out of the closet – give them plenty of sunshine. And go easy on the Happy Meals.

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 posted recently about my worries regarding having medical records online. My main concern: do online health records mean all the better for computer hackers to steal my personal information and run rampant with my identity and send themselves to Tahiti with my credit cards (and will they at the least send me a postcard)?

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:

HIPAA sets the standard for privacy in the electronic age where health industry, government, and public interests often prevail over the patient’s desire for confidentiality.

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

Keep a personal health record. This may include copies of your medical files and other information related to your health such as diet and exercise programs. For more on keeping a personal health file, see the PRC’s Alert www.privacyrights.org/ar/keepmedfile.htm and the American Health Information Association resources on personal health files: www.myphy.com/what/index,asp.

This may include copies of your medical files and other information related to your health such as diet and exercise programs. For more on keeping a personal health file, see the PRC’s Alert  

 

 

 

Follow the first link and you’ll see that they issue a caveat:

Commercial products sold to organize and store your medical data vary from vendor to vendor. Just like paper records, data stored on your computer or a distant web site can be lost, stolen, or damaged. Electronic data — whether on your computer, a distant web site, or a data storage device — is also vulnerable to unauthorized access. If you consider purchasing one of these products, be sure to read the fine print, especially the company’s posted privacy policy. When shopping for technology, encryption is a must.

That first link includes even more tips regarding your medical privacy with a personal health record, either one paper-based or online. The list is long, so I won’t post it in its entirety here. But I will leave you with one that I never would have thought of, yet when I read it, I immediately saw how important it is and it’s something I’ll do the next time I visit my health care provider:

Exercise your HIPAA rights by ordering copies of your medical records as soon after your visit as possible.

They even provide a link to a sample letter you can use to request your medical record: http://www.privacyrights.org/Letters/medical2.htm.

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.

 

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.

 

 

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!!!!

 

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