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’ve started my own personal health record (PHR) with the free online program at ihealthrecord.com.On one of its information pages it states:

"You control access. You can share your health information with whomever you choose, including physicians and family members, whenever needed because you control access to your iHealthRecord."

It also mentions I can print out a wallet card of important information I can carry with me. That’s a nice touch.It also mentions I can print out a wallet card of important information I can carry with me. That’s a nice touch.I can also fill out a PHR for anyone I wish, such as my parents, my daughter, or my husband. I think I may do that later.It also mentions I can print out a wallet card of important information I can carry with me. That’s a nice touch.I can also fill out a PHR for anyone I wish, such as my parents, my daughter, or my husband. I think I may do that later.And, if my physician is a member of the Medem Network, he or she will be able to access my ihealthrecord directly. There’s a link where I can search to see if my doctor is one of the network’s 100,000 members, so I searched for my family GP, but he’s not registered.It also mentions I can print out a wallet card of important information I can carry with me. That’s a nice touch.I can also fill out a PHR for anyone I wish, such as my parents, my daughter, or my husband. I think I may do that later.And, if my physician is a member of the Medem Network, he or she will be able to access my ihealthrecord directly. There’s a link where I can search to see if my doctor is one of the network’s 100,000 members, so I searched for my family GP, but he’s not registered.The online registration form asks me for a user name and password, the usual stuff, as well as address, e-mail and phone number. There’s also the option to supply my Social Security Number, but since it’s optional I leave it blank. It also mentions I can print out a wallet card of important information I can carry with me. That’s a nice touch.I can also fill out a PHR for anyone I wish, such as my parents, my daughter, or my husband. I think I may do that later.And, if my physician is a member of the Medem Network, he or she will be able to access my ihealthrecord directly. There’s a link where I can search to see if my doctor is one of the network’s 100,000 members, so I searched for my family GP, but he’s not registered.The online registration form asks me for a user name and password, the usual stuff, as well as address, e-mail and phone number. There’s also the option to supply my Social Security Number, but since it’s optional I leave it blank.I have to read and accept the terms of service. Seven printed pages, the form tells me, among many things that:

• I’ll be automatically enrolled in health programs devised by ihealthrecord based on "the conditions and medications you list…" I can opt out of these at any time.
• Materials and info available are for "informational purposes only and are not a substitute for professional medical advice."
• I alone am responsible for updating my PHR. Even if my physician is a member of the Medem Network, and can access my PHR, it’s still up to me to update it. Fair enough.
• My interactive PHR will "be stored by Medem as long as Medem offers this service. Should Medem decide…to discontinue…, you will be notified via the email address you provided to us at least two weeks ahead" of time. It goes on to tell me that if I haven’t updated my e-mail address, Medem assumes no responsibility for the "maintenance or loss" of my PHR. Again, fair enough. The terms of service also give me a phone number I can call to delete my PHR from their site, should I decide to discontinue using it.
• Medem employees and contractors have "occasional, legitimate needs" to access its data servers. Access is strictly limited and any individuals who have access have "signed confidentiality agreements." Access also is controlled via "pre-assigned user accounts that require multiple levels of authentication." I’m told that violators of these confidentiality agreements are "handled accordingly, up to and including dismissal."

As for that last bullet, about confidentiality agreements and the punishment of violators – my first thought is, "Okay, so you probably fire them. But is that before or after they’ve run around with my information, doing nasty things with it?" After all it seems at least once a month news comes out of the loss of or breach of a large financial institution’s online data base of members’ personal and important information, such as Social Security Numbers. All these institutions had "secure" sites and security protocols up the whizz-bang. Still, someone left a laptop lying around or a hacker clicked in and stole the info. People are human and some people steal things and I believe that even the strongest of confidentiality agreements (which would be something akin, I suppose, to "we will take your first born child to be eaten by wolves if you steal or reveal this record to others") can’t stop an individual with information from giving that information away if he really wants to. Which brings up an important relationship between controlling and managing my health records – a very good thing – and doing so using an online personal health record – another very good thing, but a tad risky. What do you think?

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.

I’m Jean and welcome to my blog about – Personal Health Records. Why they’re important and useful. What you and I can do to keep our records private. Personal health record software and tools. Medical record privacy issues. How I work to manage my personal health record. Health record privacy news.

Privacy, whether it concerns my Social Security Number, my bank account, my personal affairs, what I spend my money on – what I like to do for fun – is important to me. It’s MY information and I believe I should be the one to dole it out to others as I – and only I – see fit.

This belief that my privacy is sacrosanct flows to my health record. In fact, my health or medical record is at the top of my list of personal information I feel I should control.

That’s what this blog is about and it will evolve with your contribution. In fact, I hope to begin a dialog with readers. I figure we can help each other on this journey, as we swap links, ideas, dispense news and talk about the issues.

 A little more about me….I’m married with one child, now 10, a little girl we adopted from Russia two years ago this coming Christmas. Becoming a parent was and continues to be a wonderful experience, yet it required that my husband and I reveal some information to the U.S. and Russian governments – both medical and financial – that we still feel were unnecessary (such as any fertility treatments we may or may not have undergone).

I’m also the daughter of two elderly parents who have health issues. I don’t want to go into too much detail here – I want to protect their privacy as much as possible. But I can say one of them is in the early stages of Alzheimer’s disease and the other recently suffered a minor stroke – with minuscule cognitive impairment, thankfully.

They’re still living at home and taking care of one another. Yet their health WILL worsen and someday it will be up to my sister and me to manage their care and all that entails – including navigating their medical records.

This blog is sponsored by MyHealthMyWorld.com, an on-line health community and supplements supplier, which is taking an active role in providing personally controlled health records as part of customer care.

My background is in journalism and marketing, primarily in health related issues. I look forward to hearing from you. You can get in touch with me by posting comments or e-mailing me at jean@myhealthmyworld.com or view my online bio.