Doctors, News & Research, Society

Reading Your Doctor’s Notes

Although patients have had the legal right to read and correct their own medical records since 1996, actually accessing them is often a time-consuming and expensive process. Although advocates have encouraged doctors to share their notes with patients, physicians have been reluctant, fearing their patients may misinterpret what they read or become overly worried about test results.

Findings from a year-long study in which patients were given complete access to their medical records show that both patients and doctors were overwhelmingly satisfied with the outcome of sharing records. In the study, patients were emailed a link to their doctor’s notes a couple days after each visit. According to the New York Times,

“Approximately three-quarters of all the doctors said that such transparency had none of the dreaded impacts on their practice. Many felt there was more trust, better communication, more shared decision-making and increased patient satisfaction. While a portion of the doctors were hesitant at the beginning of the study, not a single one opted to stop sharing notes with patients after the study ended.”

In addition to helping patients feel more in control of their medical care, nearly 80% said they took their medications more regularly and were better able to follow their doctors’ recommendations when they had access to the notes.

Appointments are such a blur. Even though I always take a notebook to appointments, my notes usually wind up a jumbled mess. I would love to be able to see my medical record so easily. We all might have such access relatively soon — representatives from several major medical groups are meeting next week to discuss implementing records sharing on a wider basis.

Doctors, News & Research, Patient Education, Resources, Society, Treatment

Is Your Doctor in Touch With Current Research?

Being an informed patient sometimes means feeling like you know more than your doctor does. Sometimes this isn’t just a feeling, but a fact.

In Why Doesn’t My Doctor Know This?, Dr. Kent Holtorf explains that “. . . [T]he overwhelming majority (all but a few percent) of physicians (endocrinologists, internists, family practitioners, rheumatologists, etc.) do not read medical journals. When asked, most doctors will claim that they routinely read medical journals, but this has been shown not to be the case.”

I don’t want to believe this statement, but with schedules crammed tight and overwhelming paperwork, it’s no surprise that some docs can’t keep up on all the research in their fields.

So the patient must step in. If you read about new study findings, look into more yourself. Many of the news articles will parrot each other, but dig around for the study abstract for more details. If the study is only of people with migraine with aura, and you don’t have auras, there’s no indication that you will benefit from the treatment in the article.

Don’t just bring in an article and ask, “What can you tell me about this?” Take concrete questions to your doctor. Does this treatment apply to you? Have other studies supported its findings? If your doc can’t answer your questions right away, ask that he or she get back to you.

If your doctor doesn’t act on the information, don’t assume that he or she is lazy or unwilling to work with you. One study does not prove a treatment is effective, future studies frequently contradict previously published research, or the approach may not be right for you.

However, if you feel like you are frequently stonewalled, being disrespected or not adequately treated, there’s always the option of shopping for another doctor.

[via We Are Advocates]

Coping, Resources, Society, Triggers

Good Stuff From ChronicBabe

ChronicBabe is always an awesome site; recently it’s been overflowing with terrific articles and links.

Illness and Empathy for Others
In her latest contribution to ChronicBabe, Laurie Edwards (whose articles I love) describes how her illness influences her interactions with loved ones when they have a passing illness — both positively and negatively.

Work and Illness
Lily Thomas, who has CDH and migraine, writes about working with people who don’t really understand what your illness is like. And her experience sorting it out when her boss was the one who didn’t understand.

Emotions in Patient-Doctor Communication
“Emotional patients” have trouble remembering what their doctors tell them, according to findings of a recent study. The “emotional” participants in the study latched onto frightening or worrying information.

Keeping Cool
Heat and dehydration are big headache triggers. ChronicBabe gave this link for ways to cool off.

In an essay on NPR‘s This I Believe, Kay Redfield Jamison writes about accepting the role of bipolar disorder in her life: “It is not a gentle or easy disease. And, yet, from it I have come to see how important a certain restlessness and discontent can be in one’s life; how important the jagged edges and pain can be in determining the course and force of one’s life.”

Invisible Chronic Illness
Next week is National Invisible Chronic Illness Awareness Week. During the week, people who live with invisible illnesses are encouraged to educate the “general public, churches, healthcare professionals and government officials” about the frustrations of having an illness that others can’t see.

Thanks to Jenni and all ChronicBabe contributors for sharing coping strategies and great resources.

Doctors, Patient Education, Treatment

Misunderstandings Between Doctors & Patients

When doctors and patients talk to one another, it’s through a phone call about 25% of the time, according to a study published in The Journal of General Internal Medicine. While this is a useful way to interact, misunderstandings can lead to problems ranging from inconvenience and anxiety for patients to compromising patient safety.

Telecommunications: When Lines Get Crossed for Doctors and Patients, from yesterday’s New York Times, provides examples of medical mistakes and why they occurred.

Perhaps the most important responsibility for a patient is to speak up. It’s all too easy to minimize symptoms or be intimidated by a doctor who sounds rushed or annoyed. Assertiveness is hard to muster when you don’t feel well, but try to be extra-focused while you’re on the phone. This is your chance to get your questions answered, so make it count.

Some ideas for how you can help your doc avoid mistakes include:

  • Make a list of your symptoms before you call and be sure that you cover every item on the list.
  • If you’re prescribed a medication, ask if it has any interactions with your other meds. Have a list of your meds handy in case you need to tell him or her exactly what you’re taking.
  • Before you place the original call, make sure that when the call is returned you can go somewhere where no one can overhear the conversation. (I know, easier said than done.)
  • If questions come to mind while you’re waiting for a call or between the time you get a test done and when the results come, write them down somewhere that you can find them later.
  • If you’re given test results and don’t already have yoru questions answered, ask about what was tested, what the tests were looking for and what the results mean for you.
  • If the doc names an illness or disease that you’re unfamiliar with, ask for details about it and how the name is spelled. You can always get more information online as long as you’re confident in the source.
  • Ask if there is any further action you need to take.

OK, so these are common sense. The keys really are to be prepared for the call if possible and speak up for yourself until you feel like your questions have been answered.

The Headache & Migraine News blog had a similar post yesterday, which talks about checking prescriptions. (Thanks for the info, James!)