I tell all my patients to establish a web-based, secure personal health record (PHR). And yes, I mean personal, which you subscribe to. Not one hosted by and paid for by your friendly health insurance company, which may be used to raise your insurance rates in the future. Not one hosted by your provider organization, which you can't control the release of, and which often doesn't show you your own doctors' notes. And not even one hosted by Google, which seems to be having some trouble figuring out to stop your data from being shared in some interesting ways. To be fair, some of this is just because it is such a big target (Chinese hackers requiring NSA help) but some of the problem comes from its own internal corporate decisions (Buzz? everyone in your contacts? hullo??) [Yes, I realize I'm dissing the host of this very blog and its ad service..but then again, if my criticisms draws ads or clicks, they make money so they can laugh all the way to the bank...]
So if you want a PHR under your personal control, with data not released to anyone unless you ask it to, this means that you need to pay for it, not anyone else. But the privacy and security that offers, and the access to your own data, is worth it.
Why do I recommend a PHR? Because it makes your records accessible to anyone while ensuring security and privacy of your records. If you get or have the potential to get care in multiple provider organizations (this includes anyone who ever travels), it means your provider can have access to your records if you so desire. This eliminates unnecessary duplication of services, prevents complications of these duplicate tests, and reduces the cost of your health care co-pays. In addition, your provider will make better diagnoses and choose more appropriate treatments having access to your medical history. Provider organizations are not required to keep your records for very long, and often they do not. If you do not request these records and keep them yourself, they may disappear and the information will be lost forever.
Right now, PHRs are not yet what I hope they will be. Mainly because our federal government has not created a standard that it requires electronic medical record vendors to install which allows physicians and hospitals to share electronic records with their patients' personal health records. Even if the federal government just required physicians to share pdf files of their encounter notes with their patients over secure email, it would be a big improvement. Yes, I do look forward to the day when medications, allergies, diagnoses, are automatically uploaded to every patient's secure and private personal health record under that patient's own control and authorization, but I'm not holding my breath.
In the meantime, I've been recommending Peoplechart www.peoplechart.com to my patients. This farsighted company has been in business for 10 years, and their philosophy very much matches my own approach to patient-centered care. The company realizes that right now, most patients can't force their providers to provide standardized clinical data of any kind for a personal health record, but that people don't want to painstakingly enter all their clinical data into a spreadsheet either. So they also have come up with a way of indexing and using PDF files from providers who don't have EMRs or whose EMRs don't or won't provide comprehensive standardized clinical data feeds to a PHR (which is pretty much 100% of them right now). Peoplechart also does have the capacity to accept lab data and medication data in electronic form, and is building ways to accept other clinical data. (By the way, access this website through Internet Explorer as it's the only browser supported right now...support for Safari is not there yet so they only support the PC clientele right now). The good thing is that Peoplechart works only for you, and a human being answers the phone who helps you subscribe and figure out how to get records into the system. After you print out some authorization forms you send to them, they will collect your records for you and index them for you by date and source and author and what type of information is in them, and upload them to your personal health record). This record is completely under your own control and you decide whom to share your documents with and who is a member of your care community, which can then be changed at any time.
You might wonder what happens if your PHR company goes out of business. Make sure whichever one you choose guarantees that if that happens, you can get all your records on a CD, so that you can then upload them to whichever company is still out there in the marketplace. Of course, if you are a techie who's meticulous about keeping your own computerized records, you can download each of your documents to your own hard disk, CD, or other secure storage as Peoplechart collects from providers.
Another nice thing about Peoplechart is that it has some other good products such as a hypertension module which coordinates with the American College of Physicians' CardioSmart product, helping you and your physician keep track of trends in your blood pressure and your response to medications. Given how awful hypertension treatment and control continues to be in the U.S. according to the recent Institute of Medicine report, A Population-Based Policy and Systems Change Approach to Prevent and Control Hypertension, this is a very nice additional tool.
I do have a long wish list of ways I want Peoplechart to improve its PHR product, but at least it offers a physician like me a way to review your past medical records immediately when they are needed.
On a health policy note, the biggest improvements will come from requiring (and this is where the stimulus moneys now allocated to buying physicians EMR systems could really help) EMR vendors to provide physicians and hospitals with systems which will upload standardized clinical data fields (like diagnoses and medications) automatically to patients' electronic medical records, and requiring physicians to use these systems when patients request them, much like they are now required to provide paper copies of records when patients so desire.
If you have any sort of medical problem at all, signing up for a personal health record (PHR) is one of the best things you can do for yourself and your family.
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