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.

The building of my own online personal health record continues.

Christmas IS coming. As I write this, it’s late September and I’m telling myself I should start a list of ideas for Christmas gifts for my family and friends.

Meanwhile, my parents are in their late 70s, their health is declining and my sister and I have stepped up our visits and questions and overall concern for them. We’re also getting more involved in their care and, as they tell me of their numerous visits to doctors and clinics (“Our new hobby,” my mother quips), I’ve come to the decision I need to get all the names of all their care providers, all the drugs they are taking and their dosing schedule. In other words, I should start a Personal Health Record for both of them.

Each time they visit a doctor, I can update the online PHR I create for them. I can then keep this for myself, of course, but I could also print it out regularly and mail it to my sister and to them. That way, everyone will be up to date. Everyone will know the last time my mother went to her dermatologist, my father’s last dental check up and his visits to his neurologist. And it will be in a form neat and tidy, legible and organized.

This truly would be a great gift for all of us. Yes, it’s not shiny nor is it cuddly. It doesn’t tell time, play a favorite movie on DVD or keep feet warm at night in slippers made of fleece.

But it would give all of us peace of mind. My parents live near San Diego, California . My sister lives in Arizona and while I now live two hours away from my parents via a crowded freeway, my husband and I are moving to Pennsylvania soon. It’s already hard to keep track of all their appointments and physicians, not to mention their drug therapies.

While I could print out a copy for my parents – neither of them is computer-savvy – I could give my sister access to the online personal health record I create and update. She also could update information. When my sister and I chat on the phone, we could access the records online as we speak to look them over and discuss as needed.

I’m going to start doing this very soon – creating personal health records for my mother and father – and will post here as I do so to let you know of the challenges and opportunities inherent in creating PHRs for elderly family members.

As I’ve been building my own personal health record and listing my medications and medical conditions, I’ve been thinking of the things that I shouldn’t put there. Things that are important to my psyche, but even though my health care provider in a perfect world would be interested in what’s going on with me psychologically, things that would qualify as "too much information."For example:

• I may be middle aged (yes, I am; say it loud and proud!) but I have a huge crush on the actor Topher Grace, star of the sitcom "That ‘70’s Show" and soon-to-be-star of the next "Spider-Man" movie. I’m nuts about my husband (who’s a doppelganger for George Clooney, thank you very much). But that Topher….
• Should my nurse practitioner know about my weakness for Smarties® candies? Maybe. Maybe not.
• If I’m clothes shopping and I come across an item that’s obviously vanity sized and the pair of pants are marked a size smaller than what I know to be my true size, will I buy them? You bet I will!
• Ditto for the fact that I’m not above cutting out a size tag when a pair of dress slacks that fit extremely well are a size I’d rather not admit to when I get home and hang them in my closet.
• What about the times I’ve called in sick to work, but am I truly under the weather? No. I’m just too chicken to say "Boss, it’s such a beautiful day, I’m caught up on my work and so think I’ll spend it going for a hike in the nearby mountains."

All of these things tell something about myself that might be useful to my doctor: I’m not above getting moon-eyed over an actor who is several years younger than me; I’ve a huge sweet tooth; I’ve issues about my weight; and I’m not always truthful when a lie is easier.

So let’s say I’ve decided I really, truly do need to take control of my health care and as a first step I’m going to start my own personal health record. I really DO want to become a partner with my health care provider in taking care of myself. No more letting my doc look over a chart – one I can’t see while she’s reading it; for all I know she’s looking at photos of Brad Pitt, that’s why she smiling – while I sit patiently in my paper gown on the examining table waiting for her all-knowing pronouncement. Nope, next time I will look with her at my health record on a small computer screen perched on the little table or counter that’s always by the sink across from the examining table. I’ll see the notes I made two days before regarding my attempt to get my overall cholesterol down and I’ll see the notes the nurse just put there after she took my blood pressure, heart rate and weight before she ushered me into the examining room. I’ll be able to see that because I’ll have a PHR, one tied to my written medical record. But I didn’t necessarily start that PHR. Nope. When I wrote this post’s first paragraph “So let’s say I’ve decided …” I didn’t mean I was going to start a PHR from scratch. I meant I was going to access one my doctor started for me – it’s my medical record online, with a section I can access and to which I can add information. If, as several PHR pundits have noted, the main “problem” with getting consumers hip to the idea of starting a PHR is the very fact that we in the U.S. abhor doing anything that smacks of tedium (Known allergies? Penicillin. Have you ever been diagnosed with… Ooo, look, I need to do the dishes!), why not have my doc or someone else do it? That is, my health record already exists – I had to fill out a few forms at my doc’s office when I first visited and she and her staff have been adding to it each time I stop by – why not meld that record into one I can access and add to, as well? Surely this is doable? Perhaps not now, but soon? Online medical records are a big thing for people whose job it is to manage these things. Already some physicians have their patients’ records online (I had a doc once walk into the examining room carrying a laptop instead of a clipboard). Can we take it a step further and allow consumers access to that record? Of course, I can already hear the treble cries rise from those who worry about security issues, as well they should. But surely we can create a secure online medical record that’s accessible to both health care professionals and the very patient whose medical history is written in that record? I’m sure others have already thought of this idea; I’m certainly no genius. But it seems to me if a huge challenge in getting people to start a PHR is just that — getting people to start a PHR – why not have one already started for them?

I came across a recent blog post by physician Mark Frisse that talks about what he believes – and welcomes — to be a growing interest in personal health records, especially online PHRs. Dr. Frisse is a professor of biomedical informatics at Vanderbilt University (biomedical informatics is a term used to describe the organization, use and management of health information) and he calls PHRs "a critical factor in better health care."His blog post posits that there will be "struggles for power" over ownership of the PHR. "Who will really own the record?" Good question. As a new user of a PHR (you can read about my first attempt at starting my own here) I’d like the answer to "who owns it" be" me and my doctor."But I know it’s not that simple, yet I’m hoping it can become simple. If the medical community and consumers can together craft a personal health record program that can also be used as a bona fide medical record, I think we’ll have a revolution on our hands. If creators of personal health record software can make that software easy to use and easy to update FOR CONSUMERS, I think consumers will take to it easily. The problem as I understand it now - and I readily admit I’m just in the beginning stages of creating my own PHR – is that starting one can be tedious and a chore for consumers raised in a "I want it when I want it I want it, and when I want it, I want it NOW" culture. After all, I may know a PHR can help me and my family. I may know that I really should take more control over my own health care. But who has the time? Between work, between keeping a household, between watching over our children, between trying to have some semblance of a personal life – between taking three hours to have a date with my husband in the only three-hour window of our week – or putting together a personal health record ("Ooo! Sexy!") which would I or you or anyone choose? Sorry, PHR, but my husband is cuter. I’ve an idea that might help solve that problem. I’m going to think on it a bit and I’ll talk about it in my next post.    

On Saturday, I wrote about how having a personal health record for my daughter would have made just one small aspect of our pending move across the country easier as my husband worked to get our daughter’s inoculations up to date:

Just this week the beauty of having a personal health record accessible to my physician hit home for me. My husband and I are in the process of moving from California to Pennsylvania. He and our daughter are living with his parents while I stay in California to see our house through the selling process.Our daughter started 4^th grade August 28 and less than a week later the school nurse called my husband to say our daughter needed to have two more inoculations. (It appears Pennsylvania schools require more vaccinations than California schools.) My husband had brought our child’s vaccinations record – the ubiquitous "yellow card" – with him, but to get a Pennsylvania physician to stick our little girl twice with needles, he found out he needed to get a copy of our daughter’s medical record from our California HMO. So he called our HMO, which faxed me the "Authorization for Release and/or Disclosure of Medical Information" form. I signed it, faxed it back and then found out it would take 7-10 business days for my HMO to send it to our new pediatrician. The clerk offered to send it "expedited" (which was super of her), but it will still take at least five working days for our daughter’s medical records to get there. Meanwhile, her school’s nurse is purposely looking the other way and allowing our daughter to attend school. If the nurse were a "by the book" kind of person, our daughter would be watching The Cartoon Network on her grandparents’ wide-screen TV between 8 a.m. and 2:30 p.m for up to the next two weeks. Thank goodness for outlaw school nurses. But had we had an online PHR for our daughter, and had that PHR been accessible to both our HMO and the new pediatrician, this wouldn’t have been a problem. Once we’d given permission for the new doctor to look at our daughter’s records, she could have done so – possibly as soon as that very day. And our daughter would now be showing off two Power Rangers Band-Aids on her shoulder to her new classmates.  

I Googled “personal health record” and the first site that came up was www.myphr.com , a personal health record guide provided by the American Health Information Management Association (AHIMA). And here’s what they say about personal health records: "Every time you visit your doctor, hospital, or another healthcare provider, a record of your visit is made. This information is then compiled into what is known as your health record. Your health record, also known as your medical record, is used by doctors, nurses, and other medical staff to ensure you receive quality health care. It serves as a:•    Basis for planning your care and treatment •    Means by which doctors, nurses, and others caring for you can talk to one another about your needs •    Legal document describing the care you received •    Means by which you or your insurance company can verify that services billed were actually provided" It also includes this sentence, which I found most interesting: "Your physical health record belongs to your healthcare provider, but the information in it belongs to you!" Damn right, I say. Which is why a personal health record, one you compile on your own and apart from what your doctor has, can be so important. Especially if it’s portable – online and easily accessible by you anywhere you happen to be. The folks at MyHealthMyWorld.com are developing an online PHR and this is what they have to say about portability: "…A physician has a duty to keep your record for 7 or 10 years – so what happens when you get a recurrent symptom in your fifties that relates to a condition from 15 years ago, when you had a different doctor and lived in a different place?" They go on: The utility of personal health records extends beyond the benefit of mobility that travel, or relocation or students going off to college. So it’s time I take control of my own health record. MyHealthMyWorld’s free PHR is one of a number of PHRs that are available. Many you have to pay for. Free is good in my book. I’m going to start by creating one – also free – at ihealthrecord.org. I’ll write about my first experiences with it at my next post.