Finding the Right PERSONAL HEALTH RECORD

Though my previous blog eluded to the importance of having an electronic personal health record (ePHR), finding a good one still takes a bit of research and forethought. While I await patiently to see what Google is about to unleash with their partnership with the Cleveland Clinic, there are a number of ePHRs out there in the market worth exploring already.

The concept of ePHR is great; YOU control the content, update and take charge of the information, and provide this critical information so that your healthcare provider don't miss important details; hence avoid making mistakes. The reality is, ePHRs are in their infancy. There are numerous ePHRs out already, each with different features and business plans. PHRs are not standards-based, and most lack the ability to transport records amongst healthcare providers, hospitals, and pharmacies. Nevertheless, using them now-though labor intensive-can be life saving, if not error preventing. I will categorize the common types of ePHRs out there with some examples, and comment on some of the pros and cons related to these services. For more information on what content to look for in a ePHR, check out myphr.com.

First: the free ones. That is, free for the patient, the person storing the record. I like these the best, because paying to store health records means at some time, people will stop using them. If you have to pay to store your ePHR, where does the information go in the event you can't pay the subscription fee one year. With that said, you wonder....with the free ePHRs who pays for these services?

Well, that's where it gets tricky. Many ePHRs are offered by health insurance companies or employers, the former version often refer to as Payer Hosted Patient Portal. These portals allow patients to access administrative claims data, such as discharge diagnosis, tests ordered, but not necessarily information that you need. Again, these aren't real ePHRs in the true sense. For a privacy freak, these ePHRs are not great options; particularly since HIPPA doesn't apply to ePHRs. With the way health insurance companies denying, refusing to cover, or voiding individual's health plans due to "pre-existing" conditions, as the industry seem to do freely without shame, would you store your complete personal health record on the insurer's ePHR? And when you change health insurance companies, what do you do then? I suppose If you have nothing to hide, and don't foresee changing health plans; these ePHRs might do for now. Just know that you may need to re-do your ePHR later.

Then there are the ePHRs that healthcare systems are offering, or Provider Hosted Patient Portals. Designed to enhance safety, and to build loyalty within the specific healthcare system or provider, many of these types of ePHRs were funded by the marketing departments of the healthcare systems. These ePHRs commonly function more as portals to clinician's electronic health records, than the ePHRs as they should be. For those with access to such portals, I recommend trying one available to you in order to get the information you need, learn the features in them, and see if it meets all of your needs.

The third category is the free Vendor-hosted ePHRs. While many of these are popping up this year, such as Microsoft's HealthVault (beta), Google's version that is soon to unveil, etc. One that caught my attention is the ePHR by revolutionhealth.com. The tool is descent, and created with the right intentions; though as a clinician, I find a few areas of deficiency within the ePHR features, e.g, not enough choices under the medical conditions, and no place to enter surgical histories. There are many health tools built in to to allow one to explore one's health status. For a small fee, you can upload documents by fax into you PHR, such as ECGs or other records from your doctors' office. Certainly worth a look to see if it meets your needs. 

Many of these ePHRs will have to find a way to make a buck from advertisers, or other ways of funding the service that may make you wonder if a conflict of interest may exist. One free ePHR that is should be free of such concerns is ihealthrecord.org, a non-for-profit based service and funded by numerous medical associations. Created by healthcare providers for healthcare providers, it's a descent option for now. The information you store is fairly comprehensive. Unfortunately, for a healthcare provider to access your PHR electronically, the healthcare provider has to pay a small subscription fee. This reason alone, is enough to limit it's use. However, users of ihealthrecord can still print a detailed PHR on paper whenever they access healthcare providers.

The forth category are the Subscriptions-based ePHRs, such as Medic-alert (medicalert.org) which is known for their old fashioned necklace/bracelet I.D.s, or American Medical ID, both featuring their online "medical registry."  For emergencies, the benefit of having a bracelet has been proven over many decades--that is if you are fashionably tolerant of wearing one. As an example, I can't even get my mother-in-law to wear one, so her medic-alert bracelet is hiding in a crevice in her purse. A card in a wallet or purse with essential emergency information, and access information to an online portal could work as well.  Then there are numerous other small ePHRs that seemed to have disappeared as quickly as they have appeared.  I'll reserve judgement on the value of these services.

So check them out, and use it for you or your loved ones. Once you choose one to use, make sure you update them each time you see a doctor, change a medication, or get a immunization shot, change your address, etc.

Electronic Personal Health Records (ePHR), and why Americans need them.

O.K. you say, what the hell is an Electronic Personal Health Record (ePHR), and why do I care? Well here's a scenario:

Mildred, a 64 year old woman who lives alone, just suffered a stroke. Unable to talk due to her stroke, but able to dial 911 & hanging up the phone, Mildred was visited by the police at her home; after which, paramedics were called, and evaluated her and transported her to the closest hospital emergency department. Mildred has multiple medical problems, and takes numerous medications, and a history of multiple medication allergies and adverse reactions. But because of her stroke, she is unable to speak or use her right hand to write. As a result, she can't tell the doctors and nurses in the E.R. what her medical histories are, nor tell the E.R. staff about her medications, or allergies. She tries desperately by nodding when the health care workers asks her if she as allergies, but can't figure out how to let the E.R. staff know what they are. Her care, essentially, has been compromised.

Well, doesn't the hospital have her medical records, you ask?

That silly question, is what a lot of patients ask, when they show up to see a new doctor or visit an emergency department, without their own personal health records (which from the most recent day I worked, constitute the overwhelming majority of patients). The Answer is NO, and not only that, consider some facts:

1) Hospitals and health care providers Do Not share medical records; i.e. one doctor or hospital does not share medical records with another one (with some rare exceptions, some hospitals share a system of electronic records and can access the same data base). Only when doctors make referrals, are doctors expected communicate with each other on what they think are essential pieces of information about a patient, and that's it, and that's the standard. Unless you only use one doctor for all your health care needs (impossible, unless your $1500/year concierge doctor is Board Certified in every specialty there is known to date), then you better have your own PHR.

2) Most medical records are hand written and paper based still, not electronic; therefore, inefficient and lengthy to retrieve. On top of that, doctors are known for the exceptionally bad hand writing. Overall, paper charts are the standard, and finding a key piece of information, could be as efficient as finding a needle in a haystack. And even if your doctor or hospital has electronic health records, it doesn't mean another health care provider can access it. (Sorry, Billary, your health care solution needs some more thought still.)

3) Hospitals and health care providers do not know what your latest list of medications or allergies/adverse reactions, nor all of you medical history (unless you were just in the hospital very recently). What happens in your doctors' offices, or in your pharmacies stays there; ( It's just like Las Vegas) So, don't expect some random hospital you end up in, or even your own hospital to know what your current medications are, what your complete list of allergies are, your complete medical history, etc.

4) When you're sick, you will perform and answer poorly and miss important details, when health care providers interrogate you with a series of questions about your medical history. Just think now, do you remember when your last tetanus shot was?

5) Federal law prohibits your medical records from one health care provider to be sent to another without your consent. In an emergency, such as Mildred's case, (or during weekends, after hours, or holidays) you may not be able to request a retrieval of records from another provider, let alone remember to do so. And even if you do remember, and are able to request one, it may take hours to accomplish.

In other words, Mildred is hosed. Her care now is fraught with uncertainties, because the hospital staff has no idea what her drug reactions are or what interactions could occur if she needed some emergent medical intervention.

So what could ePHRs do? (assuming it's updated regularly by the user)

1) keep a list of your latest medications, supplements, etc.
2) a comprehensive list of your medical / surgical history
3) a list of your medication or non-medication allergies or adverse reactions
4) emergency contact information
5) a complete list of your immunizations
6) a list of your physicians and their contact information
7) copies of important documents, such as advanced directives, do-not-resuscitate orders, durable power of attorney, etc.
8) insurance information.
9) allows user to print your ePHR in a nice organized format to keep on paper.
10) allow a surrogate to maintain one's ePHR, so that a computer illiterate person can still have one.
11) In addition, many ePHRs offer tools, and other features that address specific health issues. Being electronic, the information is available online.

The important thing to note, is that a PHR or ePHR's content is solely controlled by the user. You own the content, which is good (especially if you are a privacy freak). But it's not really the same as MEDICAL RECORDS, which is legal documentation that health care providers create. Therefore, ePHR it's as good as the user is able to maintain it within the confines of the ePHR tool. But, the benefits of having ePHRs should be obvious; if Mildred had an updated printed version of her ePHR, or a method for the health care provider to access her updated ePHR, just think how this might prevent medical errors, especially in the American's health care non-system. Even if you don't have hardly any medical problems to speak of, you should still start one.

So why are there so many people out there still running around with out an updated Personal Health Record? Apathy? Ignorance? Denial? Never learned how to use a typewriter? Don't know how to create one? Cost? Time?

If you've read my blog this far, you're probably not apathetic, nor ignorant any more, and hopefully not in denial. You certainly have way too much time on your hand. You just need to know how to create one. And while a number of ePHRs cost money, some are free. There are many options, each with various features that make them better than others.

So start a ePHR for your self, or someone you know that could really use one. Keep an updated copy in your home, and an access code to your ePHR with you at all times. The only one that looses now is an ambulance chaser.

Coming soon, some ePHRs to consider.