Doctors’ notes are a bit like a captain’s log. I watched a lot of Star Trek growing up thanks to my brother. Each episode started with “Captain’s log. Stardate…” and then James T. Kirk or Jean-Luc Picard would go on to describe what has been going on in the show thus far – a personal description of the captain and crew’s experiences on board the starship.
Medical records with your doctors’ notes are the same. Each time you go to the doctor’s office, your doctor opens up your file and reads the narrative of your health he wrote down last time. Or if it’s your first time, your doctor looks at any records you bring him or the narrative you present and starts up his own log of your progress. Doctors rely on these records in your treatment. They chart the essential elements like weight, height and blood pressure. They check if you’re up to date on your vaccines and other screenings like a mammography for women or blood sugar for suspected diabetes. (These are provided for “free” each year as part of the Medicare annual wellness visit, though ever doctor worth his stuff should do these by default regardless of the visit). All of this helps the doctor plan your course of treatment. It’s a log book of your body’s voyage.
Unfortunately, medical records are not a science. Many people see multiple health care providers – maybe a primary care doctor, a dermatologist, an ob/gyn, an endocrinologist and maybe more. Each doctor keeps their own record and they develop that record based on the information you provide them and the information they glean from each visit and the tests they order. Health Information Technology (HIT) is on the way to allow doctors to keep all your health information electronically in your own Electronic Health Record (EHR) for easy access and hopefully to easily share with your other doctors to coordinate your care. The push to get EHRs in common practice is tied to incentive payments I’ve discussed earlier. And while many doctors have some computer program to keep their patients’ medical records (gone are the day of those huge file cabinets) but these programs don’t all work the same, meaning they are not interoperable (in other words one program cannot share information with another program), so the EHR is still only available to the doctor who writes in them (which is a problem the Veterans Health Administration and Department of Defense have notably been trying to work through). And of course many are concerned about the safety of storing such information.
I believe obtaining copies of your medical records is of the utmost importance in managing your own health. When we see doctors, we aren’t taking notes, we may be emotional, we may not understand what they are saying. So how can we be relied on to relay this information to another medical provider. Many people don’t even know the names of the medications they take let alone the names of the medications they’re allergic to or the procedures they’ve undergone or the complicated names of their diagnoses. The best bet to make sure you have all this information, is to have a copy of your medical records. Many of your test results may be online. But those mean little without the notes that accompany them.
Amassing these records is no small feat. To obtain records, you have to sign a HIPAA release form from each provider like this one from the University of Colorado Hospital. But to actually get a copy of the records, you have to pay. In Texas, hospitals can charge:
- A retrieval fee up to $30 for the first 10 pages
- $1 per page for pages 11-60
- $0.50 per page for pages 61-400
- $0.25 per page for the rest
- The cost of mailing
And that’s for paper records. If you want your records on DVD you can expect to pay $40 more. So 100 pages put in an easy DVD format can cost $150 (if I can still do math?) – a prohibitively expensive amount for most people to get a copy of your records (An issue you can and should address in your state legislature).
Being able to obtain records at all is actually a fairly recent development in medical care. Until the late 1990’s (during the hay days of HMOs and managed care), patients did not have a right to view their own medical records. The paternalistic doctor had complete discretion whether to release that information and who they would release the information to. Effectively this left patients in the dark about their own care. This was changed with the Patient’s Bill of Rights adopted by the US Advisory Commission on Consumer Protection and Quality in the Health Care Industry in 1998 and updated by the Affordable Care Act.
Now we have access to our records (if we can afford them) but that comes with other issues. One reason doctors did not want to release their own personal notes in a medical record was for fear of lawsuit. If a doctor does not feel free to write what he thinks is important for fear of being sued, he may not be as detailed in his notes. To an extent this is still true. Doctors need to focus on care and not lawsuits (and if they’re good doctors they shouldn’t have to worry much about lawsuits…theoretically).
Another issue this creates is patients that have a copy of medical records but no way to interpret them, looking for information to understand them online or elsewhere which may be incorrect. And without knowing what the notes mean, it may lead to more patient harm (i.e.: patients worrying or asking for care that really isn’t necessary because of something they read online.
Dr. Mike says:
You would have to change the payment system in order to effectively share notes with patients. We are paid based upon what we write about what we did, not on what we did, so notes have become almost useless as means of conveying a meaningful summary of what transpired at the patient/doctor encounter. EHRs have only made this worse. The patients guess that our notes contain a useful summary of the visit or encounter, the docs know that they are full of fluff and sometimes meaningless medical speak because that is the only way in which we can be compensated for their services, and because we must document in a way that protects ourselves in the event of a lawsuit.
Try and imagine having all your conversations and activities documented by another party, and that the other party assumes that you are potentially going to sue them someday. How would that change what they document about what was or wasn’t said in each conversation or what was or wasn’t done in each activity? You should try it yourself – after the fact, document a conversation or activity, and assume that the other person will sue you. See if you can write a note that doesn’t cast your words and actions in the best possible light. Now imaging the other person reading the notes, and imagine if they could possibly disagree with your description of what transpired.
But the public interest of being a part of your own health care and keeping that information confidential outweighs any argument that your records should not be available to you.
And this is incredibly important. Personally, I’ve made an effort to collect my medical records for the past 10 years from every provider I’ve seen (which is about how long most providers are required to keep their records). In so doing, I learned that I was not allergic to a drug I thought I was, but in fact another drug. I also found I had taken a drug that I forgot I’d tried before and didn’t work so I didn’t have to try it again. And I talked to a doctor about a mistake he made in my chart. I learned the reasons for my doctors’ course of care that I forgot over time. And I was able to convey this information to my current providers and be part of the discussion about my health care.
In a study in the Annals of Internal Medicine: Inviting Patients to Read Their Doctors’ Notes, researchers found that patients are quite enthusiastic of having access to their medical files.
- 94% think records should be available
- 90% think access to records would give them more control
- 80% thought they would take better care of themselves knowing the information in their records
- More than 50% said the information would help them take their medication properly
Doctors of course are still much more hesitant thinking the information would confuse and worry patients among other concerns. It seems they were particularly concerned about the information being available online.
Encouraging individuals to understand their own health and health history and making that information available and easily accessible is one way we can transform our health care system. Knowing what’s in your chart is empowering. It has been said, knowledge itself is power. Understanding where your health has been and what options you’re pursuing for treatment is as important as a captain charting a course for their expedition. Doctors still rely on you to provide the information they need to help you and they don’t always have access to that information (though you can ask health care providers to share their notes with other and they will do so for free, but you will not get a copy. And if you don’t remember your previous doctors’ names/addresses/phone numbers, how can your current provider contact them?).
I urge every person to learn as much about their health as they can. I advise developing a personal health record (PHR) to take to each doctor appointment. Part of developing a PHR starts by obtaining (if financially feasible) and understanding your medical records from each doctor or health care provider you see (including hospitals, labs, therapists). In the future, health information technology may facilitate gathering and coordinating these records through health information exchanges (HIEs) and cloud computing. But developing your own PHR allows you to be a part of your health care with your providers. Instead of doctors reading notes online or from another doctor, you can discuss the notes and decide what treatment is best for you or why a certain treatment isn’t working (this is called patient-centered care – including the patient in the decision making process) because you have seen the notes too. You can ask questions about items you don’t understand or discuss with the doctor if you find something inaccurate (we’re all human and doctors can make mistakes in transcribing their notes). If you leave town and need to seek medical attention, your PHR will help the providers give you the best treatment. But to develop a comprehensive PHR, you need access to your doctors’ notes.
Long gone are the days of doctors dictating notes into small handheld dictaphones or messy chicken scratch handwriting in charts (side note: a pharmacist once told me, if you can’t read a doctor’s handwriting, turn the writing upside down and sometimes you can decipher it that way). We now have the technology to provide medical records in a clear, readable format. Soon we will have the technology to make that information available to anyone anywhere. So take advantage of the resources available to you to learn about your health and become a partner in your own care.
Read the captains’ logs and with that information direct your own Starship Enterprise voyages (I know how geeky this sounds).
(Note: The laws are slightly different regarding access to mental health and HIV records).