Most doctors don't really understand chronic pain.
People who have it for a long time are used to hiding it. So doctors who are looking for "signs of visible discomfort" are not going to find it, and this is going to make them think you are a hypochondriac and not an excellent, well-practiced actor. It's a good idea to establish some way to communicate with each provider when you're in discomfort. If nothing else, this will save you the frustration of having to read the puzzled phrase "no signs of visible discomfort" so many times in your records. : )
Since they don't understand it (its causes and especially its effects), doctors will really just not be able to factor it into your overall situation. It's frustrating, but if you set that bar low, you will be less frustrated. It can also be a gate you use when meeting new potential providers. How much do they know about chronic pain and what do they understand about its effects? Can they factor this knowledge and understanding into the puzzle that is your symptoms? If so, they may be better able to help you.
At the very least, they won't frustrate you as much by throwing their hands up in the air and getting mad at you when nothing they try seems to help and they get pulled up short by their own limited knowledge and understanding. Not all doctors do this, but some do. Try to avoid them, if you can. : ) But also try not to hold it against them. No one likes to be reminded sharply of one's finitude.
Saturday, August 31, 2013
Your health care providers don't really understand that your information is yours
Your health care providers (and their billers) do not really always understand that your information is yours and should be easily accessible, so you will have to go on the offensive mission and gather it even if they treat you like an annoying fraudulant fraudster (or like they think you're a hypochondriac and not a responsible adult trying to be organized).
Cut them some slack because, in theory, they make it this hard in order to protect you and your information from unsavory types who might want to steal it. It's just a rather unfortunate side effect that all this protection makes it a hassle for you to obtain it, as well. (And judging by the amount of it that gets stolen every year, not that much of a hassle for the unsavory types to obtain.)
Frankly, you know you're working with good providers if they send you a copy of it (or post it online) automatically after your visit. If they do this, then you know that they believe that you should be a participant in your own care and not simply a consumer. However, this isn't common, so be ready for arcane rules, regulations, and hurdles not clearly posted anywhere. Be ready to make lots of phone calls and follow-up calls and records of the names of the people you talked to, their phone numbers, job titles, dates and times of conversations. I wish it weren't like this, and maybe things will get better soon, but for now, you will have to hustle to get what is rightfully yours.
Cut them some slack because, in theory, they make it this hard in order to protect you and your information from unsavory types who might want to steal it. It's just a rather unfortunate side effect that all this protection makes it a hassle for you to obtain it, as well. (And judging by the amount of it that gets stolen every year, not that much of a hassle for the unsavory types to obtain.)
Frankly, you know you're working with good providers if they send you a copy of it (or post it online) automatically after your visit. If they do this, then you know that they believe that you should be a participant in your own care and not simply a consumer. However, this isn't common, so be ready for arcane rules, regulations, and hurdles not clearly posted anywhere. Be ready to make lots of phone calls and follow-up calls and records of the names of the people you talked to, their phone numbers, job titles, dates and times of conversations. I wish it weren't like this, and maybe things will get better soon, but for now, you will have to hustle to get what is rightfully yours.
Request your medical records at least annually, while they are free
Request your medical records at least annually, while they are free (by law the first copy is free if requested within a calendar year, I think).
If you've been tracking them with your PHR, this should actually be a piece of cake. At a set point every year, you can look through your list of visits and know exactly who you saw and when and what kinds of records you need to request from which group and which records you already requested (if any). You can create a form letter and then fill in all the information clearly and in an organized fashion. The records retrieval people will love you and maybe even be nice to you and not need to be called 6 times for follow up. They will especially love you for not needing this done ASAP right now or you will be in a bad place because that is when people usually contact them, needing it done next week when their standard response time is 8 weeks or whatever.
Make sure you know each organization's standard response time, so you don't panic and start calling to follow up prematurely. You could record this information on the provider page or your PHR!
Once you have your last year's records, scan those suckers into your electronic file, so you can print out the pages you need when you need them. Then pat yourself on the back for having it together.
If you've been tracking them with your PHR, this should actually be a piece of cake. At a set point every year, you can look through your list of visits and know exactly who you saw and when and what kinds of records you need to request from which group and which records you already requested (if any). You can create a form letter and then fill in all the information clearly and in an organized fashion. The records retrieval people will love you and maybe even be nice to you and not need to be called 6 times for follow up. They will especially love you for not needing this done ASAP right now or you will be in a bad place because that is when people usually contact them, needing it done next week when their standard response time is 8 weeks or whatever.
Make sure you know each organization's standard response time, so you don't panic and start calling to follow up prematurely. You could record this information on the provider page or your PHR!
Once you have your last year's records, scan those suckers into your electronic file, so you can print out the pages you need when you need them. Then pat yourself on the back for having it together.
You need to take control of your personal health record now (before it gets complicated), pt. 2
You need to take control of your personal health record now (before it gets complicated), pt. 2.
Seriously. If you wait to even find out about PHRs until you are on the other side of the mountain, putting one together will be prohibitively difficult for one or more of the following reasons:
Seriously. If you wait to even find out about PHRs until you are on the other side of the mountain, putting one together will be prohibitively difficult for one or more of the following reasons:
- Destroyed. They will have been disposed of (usually after 7 years) and no longer available.
- Prohibitively expensive in one go. They will cost money. $1.27 a page or more. And they will print out and charge you for every page, including the ones that say nothing but "Page 2 of 2."
- Lost. They will be impossible to obtain because they were lost in the move/merger/buyout/closing of the clinic.
- Overwhelming. There will be so many of them that you won't be able to organize them in a meaningful way.
- Useless. Some of them will be comprised solely of doctor or PT speak, and they will mean nothing to you (OR OTHER DOCTORS) and will thus be worthless. Better to find this out early, maybe while the doc or PT remembers well enough to actually produce a coherent 1-page summary if asked nicely. And before you pay $1.27/page for 30 pages of useless gibberish.
Sunday, July 28, 2013
You need to take control of your personal health record now
You need to take control of your personal health record now (before it gets/especially if it's complicated).
Yes, it is a total pain to track down records from providers, and some of them won't have the records you need because they moved and lost them or there was a fire or they just toss them after a certain period of time. And if you don't have any chronic medical problems, you may not really need to, but if you do have some chronic medical problems or a history of injuries and illnesses, it might really be good to gather things while you are still relatively healthy. (Age will likely not make you healthier.) If you do have chronic conditions or a long history, it will be even more nightmarish to track down and organize all this information, but it is such a good idea to have it collected and tabbed and available electronically. In case of emergency, you don't want to be given a med you have a bad reaction to. In case of regular life happening unexpectedly, you don't want to have to be hunting this stuff down when you are hurting and not at your mental best.
My advice: Just bite the bullet and do it now. It can't hurt, and it CAN help.
Yes, it is a total pain to track down records from providers, and some of them won't have the records you need because they moved and lost them or there was a fire or they just toss them after a certain period of time. And if you don't have any chronic medical problems, you may not really need to, but if you do have some chronic medical problems or a history of injuries and illnesses, it might really be good to gather things while you are still relatively healthy. (Age will likely not make you healthier.) If you do have chronic conditions or a long history, it will be even more nightmarish to track down and organize all this information, but it is such a good idea to have it collected and tabbed and available electronically. In case of emergency, you don't want to be given a med you have a bad reaction to. In case of regular life happening unexpectedly, you don't want to have to be hunting this stuff down when you are hurting and not at your mental best.
My advice: Just bite the bullet and do it now. It can't hurt, and it CAN help.
Your medical records are wrong
Your medical records are wrong, and you can('t) change them.
This is a sad truth. And a frustrating one especially if you are dealing with any kind of Worker's Compensation claim because then the lies are embedded, and zealous adjudicators will haul them out and use them against you, but I should stop now). It's also only partially true. In theory, you can change your medical records. You just have to do the following:
But it really is a hassle, so you may only want to address the potentially life-threatening mistakes, especially if this provider is the one linked to the hospital system you would most likely get admitted to. If the hospital system and associated docs use the same health information system, the emergency room docs can see that cortisone allergy in the records. If you end up at a totally different hospital, they have no records at all since the health information systems are all designed as silos that don't play well with other health information systems because standardization in this realm prevents them from making any money.
(That was cynical. Sorry. But also true. Standardization of electronic health records would save hospitals, clinics, the government, and patients tons of money at the expense of the health information system development companies, so you can see that it is unlikely to ever occur.)
My advice: If your doctor is not afraid of you providing paperwork, try to hand over copies of what you say during the appointment (much easier with your handy PHR binder!). This could increase their chances of typing up accurate notes and save everybody time. Otherwise, just request the records a week later, and determine if it's worth the hassle to correct the mistakes. (If this is a worker's comp claim, IT IS ALWAYS WORTH THE HASSLE NOW TO CORRECT THE ERRORS TO SAVE YOURSELF SO MUCH STRESS, TIME, AND RAGE LATER, EVEN IF YOU JUST DON'T HAVE THE ENERGY TO DO ANYTHING RIGHT NOW.)
This is a sad truth. And a frustrating one especially if you are dealing with any kind of Worker's Compensation claim because then the lies are embedded, and zealous adjudicators will haul them out and use them against you, but I should stop now). It's also only partially true. In theory, you can change your medical records. You just have to do the following:
- see the records (why it's important to get the records).
- notice the problem.
- bring the problem to the attention of your provider within the time limit and in the manner your provider requires (why it's important to get the records quickly).
- follow up politely, fervently, and regularly even if you can tell they think you are a huge pain (because they don't have to deal with the fallout from the incorrect records, but you do, and it could be worse than just having some medical records people get huffy with you).
- have that response be approved/agreed with.
- follow up to make sure the change gets made (and pay any fees associated with getting another copy of the records).
But it really is a hassle, so you may only want to address the potentially life-threatening mistakes, especially if this provider is the one linked to the hospital system you would most likely get admitted to. If the hospital system and associated docs use the same health information system, the emergency room docs can see that cortisone allergy in the records. If you end up at a totally different hospital, they have no records at all since the health information systems are all designed as silos that don't play well with other health information systems because standardization in this realm prevents them from making any money.
(That was cynical. Sorry. But also true. Standardization of electronic health records would save hospitals, clinics, the government, and patients tons of money at the expense of the health information system development companies, so you can see that it is unlikely to ever occur.)
My advice: If your doctor is not afraid of you providing paperwork, try to hand over copies of what you say during the appointment (much easier with your handy PHR binder!). This could increase their chances of typing up accurate notes and save everybody time. Otherwise, just request the records a week later, and determine if it's worth the hassle to correct the mistakes. (If this is a worker's comp claim, IT IS ALWAYS WORTH THE HASSLE NOW TO CORRECT THE ERRORS TO SAVE YOURSELF SO MUCH STRESS, TIME, AND RAGE LATER, EVEN IF YOU JUST DON'T HAVE THE ENERGY TO DO ANYTHING RIGHT NOW.)
What your doctor tells you
What your doctor tells you and what s/he means to tell you are often not the same thing.
The most fascinating lessons I've learned have been about what doctors tell you in the office and what they put in their notes. Sometimes these things are . . . at least similar. Sometimes they are not. Not even vaguely. And I'm not just talking about all the times when they get basic information wrong (my job, my exercise frequency, other medical conditions, allergies, medical history). I mean like when they tell me: "if PT makes this flare up, we'll do a steroid injection; there's no need for an MRI" and their notes say the next step is definitely an MRI. (This is one of the reasons it's a good idea to get copies of your medical records every year, though it won't help you in the shorter term.)
I don't think they're being willfully deceptive or anything. They just have such a limited time with you in the office, and they can't review everything, and they don't always cover everything, and maybe they just don't realize that we patients don't automatically get the benefit of the more thorough notes they write up afterward. I suspect it never occurs to them that there is a difference.
My recommendation? A week after the appointment, call and ask to have the doctor's notes from the visit sent to you. Not all the time, just any time they tell you anything about next steps, medications, treatments, or what they think might be wrong with you.
I have now been to one clinic where they do this automatically. (!!!!) And when I compliment them for this genius way for them to make sure patients heard what they really meant to say (patient compliance is much easier this way, docs), they tell me, "If we ever forget, just call and remind us." Needless to say, I am liking this clinic.
The most fascinating lessons I've learned have been about what doctors tell you in the office and what they put in their notes. Sometimes these things are . . . at least similar. Sometimes they are not. Not even vaguely. And I'm not just talking about all the times when they get basic information wrong (my job, my exercise frequency, other medical conditions, allergies, medical history). I mean like when they tell me: "if PT makes this flare up, we'll do a steroid injection; there's no need for an MRI" and their notes say the next step is definitely an MRI. (This is one of the reasons it's a good idea to get copies of your medical records every year, though it won't help you in the shorter term.)
I don't think they're being willfully deceptive or anything. They just have such a limited time with you in the office, and they can't review everything, and they don't always cover everything, and maybe they just don't realize that we patients don't automatically get the benefit of the more thorough notes they write up afterward. I suspect it never occurs to them that there is a difference.
My recommendation? A week after the appointment, call and ask to have the doctor's notes from the visit sent to you. Not all the time, just any time they tell you anything about next steps, medications, treatments, or what they think might be wrong with you.
I have now been to one clinic where they do this automatically. (!!!!) And when I compliment them for this genius way for them to make sure patients heard what they really meant to say (patient compliance is much easier this way, docs), they tell me, "If we ever forget, just call and remind us." Needless to say, I am liking this clinic.
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