In my previous post about a Patient Controlled Medical Record, I asserted that such a thing would be a challenge to get to work in the US, but that there was a lot of potential internationally. I did provide one caveat when it came to chronic patients where I think there is potential in the US as well. Although, some argued against even that group being interested in the comments.
Let me further expound on why I think the patient controlled medical record fails for a healthy patient (and this includes people who think they’re healthy, or at least relatively healthy…ie. they don’t go to a doctor for any chronic condition). In many respects this is my talking from my own personal perspective as a young, healthy adult (although I guess all of those descriptors could be argued).
The problem for someone that’s healthy is that their medical record basically has no data. The reason you want a patient controlled medical record is so that you can extract value from the data. I don’t need to look at my online medical record to see that I don’t have any drug allergies, that I had a cold or flu 3 years ago, that I got my flu shot 4 years ago, and that when I was 15 I had a hernia operation.
The point being that my medical record is so short that there’s so little value in me trying to aggregate that record in once place. What value do I get from doing so?
I think there could be value in doing so, but not today. For example, if by keeping a patient controlled medical record I could avoid filling out the crazy stack of paperwork that’s given you at every new doctor you visit, I and every other patient would want to keep an online patient record. This should be a solvable problem, but I won’t go into the hundreds of systemic reasons why it’s not going to happen anytime soon. Although, we’ll start with the doctor preferring your allergies to be in the upper right corner in red. Now scale that request up to 700,000 doctors.
Similar to the above item, there are other ancillary functions (ie. appointment scheduling, prescription refills, message your doctor, etc.) that could be tied to your medical record that would make people want to use a PHR or other similar system. However, most people would use it for the ancillary functions and not to be able to control their medical record in one place. For many of the ancillary services this portal will need to be tethered to a PHR.
One trend that I hope will change my description above is the wave of new health sensors that are hitting the market. As those health sensors get better I believe we’ll see a new type of portal that is attractive for even a “healthy” person to visit. This concept coincides with what I call Treating a Healthy Patient. All of this new sensor data could make it worth my time as someone who thinks I’m healthy to check and aggregate my data in one location. The volume of data available would be much more than what I have stored in my memory and so it will make sense for me to visit somewhere that stores and processes my whole medical record.
How these portals full of health sensor data will work with doctors is a topic for another blog post. Until then, I’ll be surprised how many healthy patients really get on board collecting their patient data in a patient controlled medical record.
Very thoughtful article however if a healthy person has a medical emergency a mobile PHR that can instantly display vital data on a smartphone such as one’s emergency contacts, physician name and number, blood type, advance directives, etc.. would seem to be a smart way to prepare for this event so to avoid delays, confusion etc..
A PHR is a condensed set of data not to be cluttered with “too much information” or your right people won’t manage it.
Such a mobile PHR data exchange system therefore functions in other venues not just healthcare. In the Asia-Pacific market space there are some creative initiatives using a PHR for healthy women designed to empower them and be engaged in their health status.
Gerald,
Interesting comments. Seems that’s more like an emergency card than a patient controlled record. I can see value in that, but I’m not sure it needs your whole record. Although, maybe that’s where you start.
John,
I’m not so sure. On its face, you make a good case, but I think many would find a PHR useful.
First, where I agree. PHRs that are disconnected from appointments, emails, refills, etc., are orphans. You just as well just type up your particulars and stick them in your wallet.
Here’s where I disagree. I think many people who call themselves healthy have had good reason to deny ever having problems. Until now, it’s paid you to downplay problems out of fear of losing insurance coverage.
It was a real fear. Several years ago, my PCP referred me to a surgeon for a small procedure. The condition went away on its own without surgery. Yet, my doctor had to write several letters to my insurance company, which wanted a diagnosis, despite no claim. Now, under the ACA, this is a thing of the past and I suspect people will be far more forthcoming with their conditions.
A well crafted PHR’s medical history can also be of great value in future situations. For example, most of us over 50 had measles making us candidates for the shingles vaccine.
Then, there are family histories. It’s important for your doctor to know how many of your family members had cancer, high blood pressure or diabetes. Or to know if you come from a group with a history of depression, sickle cell trait or breast cancer?
If you think of a PHR as just a record of who you are now, as opposed where you come from or where you may be headed, then there isn’t much of a case. If you take a step back and see yourself in context, however, it can be an excellent diagnostic tool.
Carl,
The insurance fear is a fair comment and certainly influenced many. We’ll see if the ACA no pre-existing conditions sticks.
I agree that Family Histories and things could be useful. The problem is that entering in one PHR doesn’t mean the next doctor you visit won’t just ask for them again as opposed to looking at your PHR. Once they change that workflow, I agree that many more will do it.
Hi John,
I agree with all the above posters. Yup, you might not think the fact you had a hernia operation when you were 15 is relevant, but who knows what situation will arise where it is helpful info? Or the fact you take no meds when the assumption is that most people take something?
If you are in an accident and unable to communicate, or even if you have a doc appointment and are able to communicate, I challenge any one of us to find even a healthy patient that recreates their medical history accurately every time they have to write it down on a clipboard at the dentist or the gynecologist, or is even able to remember every jot and tittle every time they are asked.
A PHR makes the foundation of your record consistent and complete so every provider that you see is working with the same baseline. And, yes, it also serves as an emergency card…but much, much more!
Another good post!
I could describe myself and young and healthy as well, John. However, I want access to a record that has all my past and all my future in one spot. How many times are you asked about a past procedure and your mind draws a blank on the date or even where it was performed? For me, often.Oh and don’t even get me started about needing information about my kids, that is another reason all together.
I have been asking my OBGYN office when will the patient portal which appears on theri site actually function and they have told me soon for a year. They are not talking to our area RHIO either yet, again soon.
I think more patients would access a portal if it was helpful and had tools to help you understand just how “healthy” you are.
This starting to sound like ORM, and I don’t mean “object relational mapping”.
Organism Project Management
What happened to the human being — the person — in the picture?
The argument you are making is not much different than that I make: healthy people, even “just” reasonably healthy people simply don’t care about this.
The fact that the PHRs that both Microsoft and Google started failed is the first big clue.
I don’t really think fear of insurance drop is part of this.
It is simply people don’t care or very few people actually care.
How many people actually ask for a copy of their medical records from their doc? No, not because they are changing docs, but because they want to review everything?
I don’t have an answer for this, but as it is a Meaningful Use statistic, somehow that should be able to be discovered.
My experience is very few EVER ask.
Sure you can name plenty of reasons for this, but I still believe in the end it is because they don’t care.
Would it be handy for my 70+ year old parents? Yes.
Would it be handy for my diabetic friend? A bit, but he wears an engraved bracelet for this.
A PHR does make sense, but as the saying goes, you can lead a horse to water, but you can’t make it drink.
It is hard for people that do care to understand how people who wouldn’t care.
How many people actually do preventative maintenance on their cars?
RE: “The problem for someone that’s healthy is that their medical record basically has no data.”
Unfortunately, that is currently true. Today’s medical records generally note only the active events we’ve been treated for. And while family history is indeed important, just as important is the lifestyle and dietary choices we make, some of which cause problems 20 or 30 years hence. But how many “healthy” individuals get checked for A1C (long-term blood sugar), homocysteine levels (inflammation), or other basic markers of long-term health — heck, the medical establishment doesn’t even recognize such a checklist as relevant for healthy folks.?!
My point is that medical research would benefit greatly from a long-term repository of basic data taken from patients whether “healthy now” or not. Even an every-five-year measurement would provide valuable clues to afflictions that crop up later in life. PHRs or similar technology allows us finally the means to develop statistical correlations for health over time, but only if we take the view that EVERY patient is a sickness waiting to happen.
One point not already made; just because someone thinks they are healthy doesn’t mean they really are – or if they are, that they will continue to be healthy. And imagine down the road that you go in for a simple surgical procedure, and the pre-surgical exam comes up with an oddity in your EKG. Having a full PHR including annual EKG’s attached could help a cardiologist get an idea of when something happened to your heart. Plus blood tests over the years can show trends. Or rule out possible past issues.
I don’t anyone has said a PHR makes no sense.
What is being said is people generally don’t care.
Until people really care about their health, PHRs won’t catch on.
Peggy Salvatore,
I agree as an emergency card it has some use. I’ve liked the built in cell phone emergency cards the best. It transforms your phone screen into an emergency card essentially. I agree that if I didn’t have to recreate my medical history with a provider, I would do it. Most doctors still make me fill it out though. I guess I could manually reference it, but even then I give up and make a best guess (or I mean other people do, not me).
Deanna,
I want access as well. Although, does that mean I’ll actually use it once I have access. Kids is a good one, and especially shot records. OB is another interesting one since you have an annual relationship (often more) with them.
I agree that if a portal could tell me how “healthy” I was, I’d use it. I’ve debated going to my doctor for a “healthy” checkup and see how they respond. My chief complaint will be that I want to be healthier. I don’t think they’ll know how to treat it. They’ll probably just give me a physical and say I’m healthy (ie. they couldn’t find any sickness).
Axeo Med,
We don’t talk about human beings here. We talk about CPTs and reimbursement;-)
John Brewer,
Yes, that’s basically what I’m saying. Many don’t care.
David Swink,
You make an interesting point. If enough of us started to track and record the various data elements, then the science of treating healthy patients would be able to work with that data and know how to better treat a “healthy” patient and then more people that are “healthy” would want to be treated. Very interesting.
R Troy,
Yep. That’s why “healthy” is in quotes.