Do Patients Know Enough to Talk about Medical Topics? | Rheumatoid Arthritis Warrior

Do Patients Know Enough to Talk about Medical Topics?

The e-patient movement

Titaness Themis of good couselThe movement for prepared, engaged patients and shared decision-making is international. It is recognized and supported by people in positions of power at many levels. Organizations, think tanks, and government agencies study the movement, often supporting it in an effort to advance care, reduce mortality, and lower costs. It is not patients versus doctors. The British Medical Journal has taken up the cause. Many members of Society for Participatory Medicine (SPM) are doctors and its foundational document, the e-Patients White Paper, was authored by a doctor. But, I have called it a civil rights movement, in part because some people have suffered while others continue to maintain control, shunning a partnership that would hasten progress.

Two simple popular slogans summarize the goals of the engaged patient movement:

Gimme my DAM (Data About Me) data, and Let patients help, which is also the name of Dave deBronkart’s new book. People who become patients simply want access to information concerning themselves, often created at their own expense; and the opportunity to communicate with medical personnel like they can with others they employ to mend their pet or car.

Have Patients Forgotten Their Place?

Many doctors somehow (difficult for me fathom how) view people who become patients, especially chronically ill patients, as less intellectual or less credible. They assume it’s impossible for patients to have anything valuable to contribute. It’s a well-documented phenomenon I’ve heard medical professionals describe at conferences. In The Empowered Patient, Elizabeth Cohen tells how even doctors are subject to this problem if they become patients.

This week, I read two articles by doctors critical of informed patients, one on Medscape in “Ethics in Psychiatry,”[1] and the other in the “Rheum in Bloom” blog that you may remember from Larry Greenbaum’s “Kiss My A…” blog post – to read about it, click here.

“Not all information is created equal”

No doubt the most read blog on Rheumatology News is Larry’s “Kiss My A…” post, which many, including some doctors, responded to on their own blogs. The RN website deleted many comments and letters to the editor in response, but local media interviewed Greenbaum along with one of our readers who had been his patient [see video below].

Dr. Chan, another RN blogger, doesn’t say anything as hateful to patients as “kiss my a…” but her condescending attitude is troubling.[2] She is bothered by the very things which most people I know advocate and labor for, like patients having copies of doctor’s notes and lab results. She writes: “I think it provides patients with a sense of some degree, however small, of control over their disease and its treatment. But not all information is created equal, and I think some information may be more fraught for a nonmedical consumer.”

Why does a parallel quote come to mind: some animals are more equal than others?

Today, I re-read sections of Cohen’s book, being reminded that I’m not alone in my opinion. Doctors are human and they make their share of mistakes, so of course studies show mutual respectful democratic communication makes healthcare more successful – more healthy.[3-6] Ms. Chan writes, “If we are being frank, we ought to admit that there are limits to what a patient can understand, and full disclosure may not be always be appropriate.”

And I know what might change her mind: waking up suddenly disabled by a furious disease like many of my readers did – many of whom were nurses or lawyers or teachers – and a few of whom are doctors. Or even worse, we learn by watching a loved one navigate the broken system, and be harmed by it, like many of us have, including Dr. Leana Wen, author of When Doctor’s Don’t Listen. (See my own list of harms below). No one wishes misfortune on anyone, but it truly is a quick teacher. There are a number of comments on RAW from medical professionals who were quite stunned and disappointed in the medical profession after being diagnosed.

A “disturbing” trend?

The very democratization that my colleagues and I labor for is disparaged by Dr. Pies on Medscape: “And yet, it seems to me that we have witnessed a kind of false ‘democratization’ of science…” His concern is for “nonphysicians” who communicate on medical topics. Pies says several medical specialties have been “targeted” by blogs, which he says have a low rate of medical accuracy.

Why such strong language such as “Death of the medical expert?”

Why is the rise of the informed patient the death of the medical expert? Why is the birth of the patient expert the death of the medical expert? How does democratization of information present a threat to doctors? It sounds like absolute custody of knowledge ensures absolute power, and prevents irritating meddling from patients. It’s obvious that Dr. Pies doesn’t know very much about some of these topics by the way he places words like “chat room” and “blog spot” (Blogspot) in quotes. So, giving him every benefit of the doubt, he may be thoroughly misinformed about what blogs and informed or expert patients are all about. Maybe another physician will be able to reach him with the evidence and help him become enlightened.

Some comments cheer Pies’ position blindly saluting the sovereignty of doctors: Jack Buchan writes: “Very thoughtful examination of a disturbing trend…”

Other comments are very interesting, like Henry Adams, a psychologist: “There is no “democratization” because those in power didn’t give power to the masses, they took it thru electronic knowledge, albeit imperfect per our standards. …Why are patients running to the Internet and non-physicians? Because (1) drugs don’t work, (2) physicians don’t get it, and (3) High Tech is moving faster than ever…”

My favorite is what Cynthia Bainbridge said: “Marie and Pierre Curie never patented any of their findings because they believed that scientific information belongs to everyone. I absolutely agree with them and am uncomfortable with the idea that only those who can understand it should have access. I would remind many of you that when you were first given this information, you didn’t understand it either – you studied and worked on it until you understood it – a process called learning. Please don’t assume that patients are incapable of learning and please acknowledge that lots of people who have been trained to think critically about empirical data. Those people probably know that they aren’t physicians and that this affect their ability to draw evidence based conclusions. People without scientific training might be more interested in learning than they get credit for. Dr. Kavirayani pointed out that the word for ‘doctor’ comes from the Latin word ‘to teach.’ We all know about the impact of managed care, but please try to think for a moment about what this means. Here is what really disturbs me as a patient: there have been several occasions when a doctor refused to even look at information I brought to an appointment and made it clear to me that even if I had reliable information, I could not possibly have understood what I read. This is much more disturbing to me than a doctor who doesn’t know something or makes a mistake.”

Postblog: In some ways, the words of Pies and Chan are startling to me because daily I read discussions of the SPM that revolve around efforts of patients around the world to gain access to medical information, and new articles in the SPM Journal report on participatory medicine and its advantages. I wasn’t surprised to find some of those are republished on Medscape.

As a Medscape subscriber, I got an email from Eric Topol in May announcing he had become the new Editor-in-Chief. He wrote, “Medicine is thus poised for its biggest shakeup ever as it transforms to a more precise, individualized, and democratized model… We intend to take Medscape to the next level, one that embraces the need for change…” I’m going to send Eric my response to Pies’ article, which is in the ethics section of Medscape, not marked as an opinion piece. If you have an opinion about the article, you might let him know too at etopol@medscape.net or @EricTopol on Twitter.

Some mistakes by doctors in my family
– When I sought care for my firstborn’s deafness, multiple doctors told me she was fine.
– For nearly a year, several doctors refused to let my infant son see an ENT for an obvious breathing problem caused by a large tumor in his throat. My son nearly died, and my own persistence saved his life.
– Pediatricians misdiagnosed a serious fungus on my son’s face for two years, telling me it was nothing, and giving no treatment.
– Several doctors insisted my daughter’s wrist was fine and she should just quit playing tennis, when she needed surgery for a large solid cyst, and then played on the tennis team through 4 years of high school and 4 years of college.
– Pediatricians were adamant my son did not need glasses at age 4 when he required a strong prescription.
– Pediatricians insisted my other son did not need hearing aids at age 12 months when I recognized he has the same severe hearing loss as his sister.
– Physicians insisted my grandmother was fine while she bled internally from a car accident that led to her death.

There are many more. Part of the story is on epatients.net and some other parts on Howard Luks, MD’s website. THE POINT? Everyone makes mistakes, so things work better when both parties are welcome to contribute information, or admit that they don’t know something.

FOOTNOTES

1 Pies RW. The Death of the Medical Expert? Medscape [Internet]. 2013 Aug 19 [cited 2013 Oct 8]. Available from: http://www.medscape.com/viewarticle/809438

2 Chan KK. Rheum in Bloom: Doctoring in the information age. Rheumatology News [Internet]. 2013 Sep 26 [cited 2013 Oct 8]. Available from: http://www.rheumatologynews.com/views/rheum-in-bloom/blog/doctoring-in-the-information-age/639deec90fc61965bd492b324eb7abdd.html

3 Kelly C and Hamilton J. What kills patients with rheumatoid arthritis? (Oxford) Rheumatology [Internet]. 2007 [cited 2013 Oct 9];46 (2):183-184. Available from: http://rheumatology.oxfordjournals.org/content/46/2/183.full

4 Khan NA, Spencer HJ, Abda E, Aggarwal A, Alten R, Ancuta C, Andersone D, Bergman M, Craig-Muller J, Detert J, et. al. Determinants of discordance in patients’ and physicians’ rating of rheumatoid arthritis disease activity. Arthrit Care Res. 2012 Feb [cited 2013 Oct 9];64(2):206-214. Available from: http://onlinelibrary.wiley.com/doi/10.1002/acr.20685/full

5 American Institutes for Research. Shared decision-making and benefit design: Engaging employees and reducing costs for preference-sensitive conditions [brief]. Robert Wood Johnson Foundation. 2013 Apr [cited 2013 Aug 15]. Available from: http://www.rwjf.org/content/dam/farm/reports/reports/2013/rwjf405304

6 Edwards A, Elwyn G, editors. Shared decision-making in health care: Achieving evidence-based patient choice. 2nd ed. New York: Oxford; 2009. 356 p.

Recommended reading

Guest posts I wrote way back 2010!
On Dr. Luks’ blog: Healthcare & Social Media: Are e-Patients Crossing the Line?

On E-Patients.net: The Unwilling E-Patient: Learning to use my mother-of-a-patient voice

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

20 thoughts on “Do Patients Know Enough to Talk about Medical Topics?

  • October 10, 2013 at 7:06 am
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    Even though strides have been made, we still have so far to go. I can’t comprehend not receiving or having access to test results and notes. What is there to fear? My education about both my disease and Melissa’s has allowed us to have better, more productive conversations with our docs about our care. It has lead us to try new treatments when things aren’t going well. We can’t stop bringing this to the forefront. Problem is it may take a generation to see a change.

    Reply
  • October 10, 2013 at 7:45 am
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    Apparently I am very blessed in the fact that my Rheumatologist is willing to listen to me and work with me. Of course I am an NP so maybe it is different for lay people in his practice, but I do not think so. Also the hospital system in which I work is going to EPIC EMR and patients are encouraged to sign up for My Chart so they can access all their records.

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  • October 10, 2013 at 9:27 am
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    I blogged on the same ‘Rheum in Bloom’ article by Dr. Chan recently. However, the closing sentence summarizes a hurdle all too familiar – “If we are being frank, we ought to admit that there are limits to what a patient can understand, and full disclosure may not always be appropriate.” Seriously?

    I will give an alternate view on the veterinary world that, to me, parallels the difficulty we have as patients. My dog was seeing a specialist for an ongoing issue. The specialist decided on a different treatment and I asked ‘why’. The tech launched a lengthy attack on me. Quoting: ‘you people need to stay off the internet. You will never have a fraction of the knowledge the vet does and it just wastes our time for you to come in here and ask questions. Just let him do his job. You read things on the internet you have no way of understanding. It’s not even legitimate information. It just wastes our time.”

    I don’t understand many in the medical community. What do they fear with patients? Their attitudes create a wall that inhibits partnering for the best care for a patient.

    My first rheum lost the job because he always talked as though I was not in the room. He made the decisions with no discussion with me. He never asked what I wanted to do. My current rheum is much better – he is very open to questions, loves to explain/teach and has the philosophy of partnering with the patient.

    We still have much work to do.

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    • October 10, 2013 at 9:48 am
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      I’ve never had a vet like that – I’d never tolerate it because there are plenty of vets to choose from. Both vets I’ve had were so open to discussion and letting me make all decisions, with their expert input.
      Never met a rheum dr like that though – but as I remind patients frequently, there are some out there & we need to gravitate toward them.
      Sad how Chan is so young & I’ve met other young ones just as bad (& quite poorly educated) – sad because it is a whole generation of poor care that patients will endure unless we can educate them… which is why that’s a big one of our goals on RAW and at the RPF.
      Thanks for your part Donna.

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    • October 10, 2013 at 9:49 am
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      oh, and I noticed you corrected her grammar / typo for her in your quote. what’s that old saying? people (doctors) who live in glass houses…

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      • October 10, 2013 at 1:58 pm
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        Kelly, I can only refer to Dr. Chan’s other quote –

        “it serves the pedant in me well. Not only do I get to explain what is not clear, I also get to correct misinformation”

        Guess she missed the grammar class while focusing on the patient relations/compassion class. 😉

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  • October 10, 2013 at 11:18 am
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    Really loved my rheum dr. until my last visit when my achilles tendons were in a big flare. Tried to talk to dr. about tendons & RD. Dr. actually said, “sounds like someone needs to stay off the Internet!

    Reply
  • October 10, 2013 at 12:00 pm
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    This is a tough topic, because to a point I can see both sides. First, I have to say that whether or not we understand the info in their chart/lab results, etc., each of us should have unlimited access to this info. I like Julia’s comment about having access electronically to all her medical records, that to me is ideal. I think the fact that we have chronic disease puts us in a unique situation. We are not going to ‘get better’ and this is a life sentence so we begin a lifelong education process and I believe many of us do indeed have a better understanding of this illness than do our physicians. I also can understand the physicians point of view, because I have some family members who are online reading lots of information (and misinformation) and they have diagnosed themselves with all sorts of things and are really hindering their own medical care. One family member in particular will frequently take 1 result on a blood test and look at all the things that might cause that online, and then she is completely convinced that she has these conditions. We all know that no lab test is 100% accurate – look at how many with RD are RF negative, and without the clinical knowledge to put all the pieces together, it can be dangerous. Its a delicate balance to coordinate our health care. We all need to be part of the team: doctors; patients; family members; online communities like this. Obviously if your Doctor doesn’t want you as a part of the team, get a new doctor. If any doctor speaks in such a condescending way as Donna said, get rid of him. By being unwilling to explain, they are clearly not a team player and have to go. I think the most difficult part is to balance is to understand enough to know when I need to be the coach of the team, when I need to be a player on the team, and when I need to back off and be the cheerleader for the team.

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  • October 10, 2013 at 12:55 pm
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    If you don’t know enough, get your butt in gear and learn. It’s just plain dangerous to not know as much as you can about your diagnoses, treatments, drug reactions and allergies, family history, etc.

    My PCP always gives me copies of lab reports just as a matter of course. I always ask the lab to send me copies, and I have copies of surgical reports, etc. More than once I have been glad to have them. Doctors move, retire, quit, drop dead. If you don’t take responsibility for keeping your records, no one else will, either.

    I have been to doctors who seem threatened by my ability to spell or pronounce drugs I have had allergies to or that I am currently taking. I’ve been asked (and not in a friendly way) if I have a medical background. Nope, boys, fine arts is where the bulk of my education is. BUT, I read, I pay attention, and my IQ may well be above yours. I don’t take the time to try to decipher the drawings of the molecular structure of a drug I’m taking, I don’t know which antibiotic is best for a certain infection, I’m not about to do my own surgery, and I appreciate the fact that my doctors see patients day in and day out with related problems. They know way more about medicine than I do, of course!

    I can tell you, though, that my dentist knows little to nothing about Humira’s side effects, my rheumatologist isn’t too up on endocrinlolgy and vice versa, and surprisingly, the brilliant hand surgeon knows less about rheumatology than I might have expected. The more I know, the better we can all work to keep me going.

    Reply
    • October 10, 2013 at 3:41 pm
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      Sometimes patients in countries outside the US have commented about difficulty getting access to lab results or other information about them, but in the U.S., it varies quite a bit. Certain companies make patient access more difficult by specific policies they set, claiming that the patient is not their customer. An example is Quest Diagnostics, with 2,000 locations in the U.S., which will not give access to lab results to patients.

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      • October 10, 2013 at 4:19 pm
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        I thought we now had the legal right to our medical records in the US. Far as I can see, if I’m responsible for the bill, I’m their customer!

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        • October 10, 2013 at 4:29 pm
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          Quest would say that you should take that up with your doctor. The reasoning I’ve heard from them is similar to Dr Chan’s – that you might not understand the results unless your doctor explains them to you.
          And in a third party payer relationship, they are paid by the insurance as ordered by the doctor, even if the source of the money is us. And come to think of it, when I use Quest, I DO have to pay them directly – my insurance always refuses it.

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  • October 10, 2013 at 3:31 pm
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    I finally was able to replace my rheumatologist, with whom I was dissatisfied for many of the familiar reasons as described above and elsewhere (not to mention many outright mistakes in dosage). I am now seeing nurse practitioner with specialization in rheumatology, and she is really sharp and knows how to listen. I was delighted to find an article (http://ard.bmj.com/content/early/2013/08/26/annrheumdis-2013-203403.abstract) of a massive study in the UK showing that outcomes for nurse-led care were just as good as for doctor-led care. It would be interesting to learn whether results would be similar in the US, but I suspect the answer would be a resounding YES.

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  • October 11, 2013 at 3:09 am
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    I thought I had a fabulous rheumatologist…I guess I still do. But reading this article I realised I automatically play the chronic patient game of not questioning or complaining because I am too afraid of being written off, not treated or not being taken seriously. Yet I am well-informed on my own condition, what hurts today and am able to consider information from various sources. What is wrong here that we are not allowed to be in charge of our own crummy journey through chronic illness?

    Reply
    • October 11, 2013 at 8:25 am
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      It’s an important point Sarah. Sometimes we think things are great because we are “behaving.” My Dr Smart (who I would still take back in a heartbeat just so I’d have a decent, not great, but decent doc) dismissed me when I asked for a re-reading of the bone scan that was not read by the radiologist. That was my first and last strike.
      Your point is exactly what I did “wrong” – tried to be the driver on that issue – to get what I needed – a proper reading.

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      • October 11, 2013 at 9:40 am
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        This is the uphill battle we face. We MUST be educated patients who take an active role in our healthcare. I have had RD for over 8 years now, which means I have been studying and experiencing RD for that long – more than any young rheumatologist for sure. A rheumatologist will generally study RD very little in medical school, 3 years of a 4 year rheumatology residency (1st year is Internal Medicine), and they will never EXPERIENCE the disease, they only observe, and as we know, we can be a complete mess and look perfectly normal on the outside. I am guilty (I am ashamed to admit) of the same things that anger me so much with doctors. My aunt had RD and spoke of joint pain and fatigue and I thought she was using the RD as an excuse to have a sedentary lifestyle. Until you experience it you don’t really have an understanding, it sounds so much milder than it really is from the perspective of an observer or a book-learner only. Great rheumatologists are very few, but if we come to an OK rheumatologist and bring our own knowledge and experience and get involved in our own outcomes, our treatment will have to be better than it would if we were silent. And like Kelly’s experience, we shouldn’t feel guilty or afraid to insist we get what we need. Hopefully our rheumatologists will not be intimidated by this, since we all should be seeking the same goal of good treatment.

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        • October 11, 2013 at 10:08 am
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          Great points Elaine. Well said.
          The shock between what it IS & what people think it is has been said by thousands of patients here, many of whom worked in the medical profession & realized they had been misinformed.
          And the docs who I know had a 2 yr rheum fellowship not 4, which makes your point even more.

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  • October 12, 2013 at 4:12 pm
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    Thanks so much for this overview of the “disturbing trend” towards patient engagement, Kelly. At first, it reminded me of a 2009 TIME magazine piece by Dr. Scott Haig, called ‘When The Patient Is A Googler’. It was a scathingly arrogant attack, describing his Googling patients as “suspicious and distrustful, their pressured sentences bursting with misused, mispronounced words and half-baked ideas.”

    I like to contrast that ‘harrumph!’ with (thank goodness!) a growing number of enlightened physicians like Dr. Joe Ketcherside, responding to an article on Medical Googlers reposted on Linked In:

    “Normal people gather information on all kinds of topics and evaluate its content and reliability all the time.

    “We have to decide what car to buy, how to refinish the floor, what type of mortgage to use on a home purchase, where to vacation.

    “We often also have a job that has professional responsibilities and must maintain our knowledge of our specialty. We sometimes have actually gone to college and even graduate school where we learn all about doing research.

    “So – sorry to the other physicians who disagree – but a great many of your patients are perfectly capable of researching their illness and in short order, knowing more about it than you do.”

    We live in hope…

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  • October 14, 2013 at 7:08 pm
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    Dear Kelly and all RD warriors,

    The situation of trying to get health care providers to talk to the patient is becoming worse. Many doctors barely enter the examination room.

    When the Rheumy, the Internist, and then psychiatrist see me their backs are to me as they type into the computer or pull up the lab work etc…
    1. I helped the Psych. adjust his screen etc… So he can go back to making proper eye contact. I’m glad I was in the first day of his adventure with maintaining even session notes on the computer
    2. The rheumy: I now drag a chair to the little desk facing a wall that he has to sit at. These exam rooms were set up before everything was computerized.
    3. Challenging the internist to order the blood work ups before the appointment so the results could be discussed face to face, not through voice mails and office assistants, created rancor.
    Not all issues are caused by this technology driven world replacing human contact

    Chronic permanent health issues like RD, aged parent, or child who can’t explain what is wrong, create a certain frustration with doctors and their staff that is inflicted on the patients.
    Maybe that is why we are called patients. We have to patiently put up with their foibles when we feel like yuck.

    I am grateful for the information your website has provided. You seem to do a very good job turning medical jargon into English. I appreciate the way you sift the misinformation out when you do your website. I wish some of the other websites for other health issues were as well done. Maybe then the doctors would not be so agitated when a question begins with, “on the internet I read…”

    Respectfully,
    NVk

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  • October 19, 2013 at 6:16 am
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    I agree there is dubious information on the Internet (and research studies can be biased), but reputabable information should be considered a good thing. I tend to put it like this: “Think about that colleague you’ve met who has made you think, ‘Wow, how did this person get their license?’ Now consider I may have seen such a provider in my life. I also see more than one doctor, who may comment on treatment even if it isn’t their specialty. Just covering my bases, you know?”

    Reply

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