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As Dave stressed "Let patients help", my question is how can patients help their doctors?

The relation between a doctor and his/her patient is a relation of trust. If a doctor feels that he or she is not trusted enough, they may switch into defensive decision making process. And that would surely not yield good result. I personally believe that doctors treat their patients in best faith, but their treatment method may not be best. One of the vital resources "patient" is neglected till now. So how can patient help their doctor?

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    Jul 1 2011: Hi Sulav - this is a rich and deep question, with profound cultural implications. I don't have time to fully honor it at present but I'd like to start the dialog.

    As with most profound cultural challenges, it starts with assumptions and expectations. If a doctor OR a patient expects the doctor to know everything (and the patient to know nothing), then trouble starts the moment a doctor does NOT know something, and the moment a patient does. That's why the internet has had such profound effects: the information explosion means NOBODY can know everything anymore, and the internet means patients (without medical training) CAN find information that the doctors haven't seen.

    THIS DOES NOT MEAN THE DOCTOR IS A FAILURE! It's so important to realize that in the old world, good medical information was available ONLY inside the academic medical world, and that's no longer true.

    Dr. Donald Lindberg, director of the US National Library of Medicine, said that if he went home every night and read TWO journal articles after a year he'd be 400 years behind! (I learned that from the e-patient white paper http://www.acor.org/epatientswiki/Chapter_2#6._Clinicians_can_no_longer_go_it_alone.)

    There's much more but that's the single most foundational point of awakening. If we all accept the NOBODY CAN KNOW EVERYTHING anymore, then what emerges is the value of the TRAINED MIND. That's what my physicians have that I don't. I can certainly learn - and you might be amazed at how smart some of the ACOR members are. But I will always be grateful to the trained, skilled, experienced physicians who saved my life.
    • Jul 5 2011: @Dave, I cannot agree with you more. The medical advances are happening at such a rate that it is humanly impossible to know everything. And surely doctors need to change their attitude towards activist e-patient and I think they will eventually do it. "Activist e-patients are a blessing, not a curse.". Thank you for the link.
  • Jul 6 2011: Having been through an uncommon and extreme medical condition, I had the opportunity to work with several doctors - some exceptionally wonderful and some not so good. I believe a patient can help a doctor in many ways.

    1. Understand that medicine is a science, but nothing is exact in the human body. Your doctor is attempting to interept what is happening and fix it at the same time. Nothing is absolute. On the journey of curing a diease, symptoms may change because you're cured, because another ismasking the original, because a drug is placating it... If you understand that your doctor is gathering facts and reacting, you can feed them more information.

    2. Comply with your doctor's requests or tell them you aren't going to. If they prescribe medicine or activities - fully comply with their requests. If it then does not work, it gives them more information to attempt to understand what is going on. If you don't agree with the request, tell them immediately, so no time is lost with them expecting you to do something you are not.

    3. Document your progress/lack of progress/ symptoms/ actions. This provides a doctor with valuable detailed information to help them diagnose what's happening. Vague "I don't feel well" doesn't help. "My stomache started hurting just after I ate pizza" or "My stomache has hurt after 8pm every night for the past two weeks" helps.

    4. Bring up ideas. Understand that what you find on the Internet is not a medical degree nor is it necessarily true. However, anything you think might match your situation, you should mention to your doctor. My great doctors shook their heads a few times and explained why my Internet discovery didn't fit my situation. My bad doctors got defensive that I even asked.

    5. Change doctors if you don't feel you are getting enough information or options. Do the old school doctor a favor and get off of his rotation. There are plenty of new-minded doctors who look forward to intelligent patients.
    • Jul 6 2011: Those were really concrete and nice points.
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    Jul 1 2011: http://jackkruse.com/ this is my response. We can change my profession very simply if you change our thoughts and we help patients help us help them.
  • Jul 15 2011: Hi SulavI have schizophrenia and have had it for over 30 years, I am in complete remission for the last 12 years with the help of medication. It is my job to teach residents, medical students and doctors as to how I did this. The truth is that the medical field believes the best we can do is stabilize, i'm living proof that we can recover. I teach Patients and Doctors as well about this and they are learning. The most important thing to remember is that when you are in a room with a doctor, you are the expert, nobody know you or your body like you do. I have a devastating illness but lead a normal life. I own my own home, car and I travel, take care of my mother and work full time. So I guess in short my answer to your question is we can teach them about many things, all they know is medicine.James
    • Jul 17 2011: That's really touching. Surely, there is more than technical side involved.
      • Jul 17 2011: Sulav

        There was nothing technical in what I said, it is a shared relationship that teaches a doctor, I think you missed my point.

        • Jul 17 2011: @ James, I think I did not complete the sentence. sorry :). I was saying that that help should not neccessary be of technical nature.
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  • Jul 7 2011: The physician does not have the data collection tools yet to read between the lines of what the patient is saying. We do not have the time to know our patients in this healthcare model but I believe it is possible to create a tool that will help non-intuitive people really see what in the patients life is preventing them from progress. Relationships, finances, predjudices (Self, others, beliefs), self identified life roles (aka patients who take care of someone over themselves), unworthyness. . . the list goes on, I do not think it is out of the realm of possibility to train doctors/nurses in a data assessment form that helps them read between the lines and guide patients in their own self discovery.
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      Jul 21 2011: In order to physicians get data from the patient, patients should be able to collect data that will represent their life experiences. Patients observe a lot of valuable facts that would be useful to physicians for more accurate diagnosis and more realistic and efficient treatment plans. However, data collection tools available to patients are not sufficient.
      If the patients can have sophisticated data collection tool that will be useful to record their life experiences, patients can pass them to their care providers.
  • Jul 5 2011: Since this is merely an opinion-based response to your question and not backed with any cited research, I would ask that you critically consider this.
    Anecdotally, I have found that the best ways a patient can help a doctor is more common sense than one would think. Yes, showing up on time for a doctor's appointment can be like making the check-in cutoff for an inevitably delayed flight (both are more likely, the later in the day). But the best indicator for your overall prognosis (beyond treatment compliance) compared to others with the same diagnosis will eventually proven to be stability/balance in one's life, and a healthy social support network. Stability and balance are self-buffering aspects to cushion the extra taxing stress of an illness or chronic condition. Without such personal imperatives, your health is surely at greater risk. And your social support network must consist of like-minded individuals that are invested in your health and happiness. When it all becomes too much to continue juggling all the responsibilities, help with the dishes or taking the kids out so mom or dad can rest are unrecognized saintly acts!
    That's the common sense aspect of it all.
    Here's some not-so-common sensical pieces of advice specific towards the help your doctor would appreciate: Ask everyone in your family to tell you, the patient, what diseases they've been diagnosed with. Find out what your grandparents, great aunts and uncles, and any other deceased relatives died from. Use this info to fill out a medical family tree. This will greatly aid in the potential diagnosis of a medical mystery if you're on your 3rd or 4th doctor.
    While you're at it, find out what food and medication allergies your family members have/had. If certain drugs did not work for an illness that a relative had, that may be telling about your therapeutic outcome too.
    This is personal info and o.k. if you can't get it. But it can save tremendous trial and error!
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    Jul 2 2011: I'm fortunate to work for Ashburn Clinic, a psychiatric hospital in Dunedin, New Zealand. As a democratic therapeutic community our operating philosophy doesn't assume the doctors know everything and the patients nothing. Everyone at the hospital, patients, clinicians, kitchen staff and business staff like me, are expected to make a positive contribution to the overall treatment programme.

    While there is of course some professional expectation, not everyone prescribes medication, that does not preclude using what ever strengths everyone is able to bring to bear on an issue. We discuss all major events as a community, and even when most unwell, patients are able to make meaningful and valuable contributions. This increases their belief in themselves and removes the pressure on clinical staff to be "perfect".
  • Jul 1 2011: I think the best way for patients to help the doctor is by taking care of themselves. Many diseases nowadays are caused by standards of living. Not poor standards. Overly rich standards. Too much fat, too much salt, too much sugar, too much tv, too much wow, too much sitting down at work, too much sedentary lifestyles, too many medicines, too clean an environment, too many stresses, too much work, too little sleep, too much noise, too little time, too much pollution, too much drinking and smoking, too many e.t.c

    If we live healthier then the amount of unnecessary medicine and procedures will decrease. Then doctors can truly concentrate on diseases that are difficult to solve. Imagine trying to find a fatal disease in an adult obese male that drinks, smokes, eats too much of everything, doesn't exercise, has type 2 diabetes lives in a congested part of town close to a coal power plant and works in an office with a moldy central cooling system. The person might have symptoms from a variety of different diseases. The doctor would be overwhelmed trying to find what was killing him.

    Try to keep your body as "clean" as possible. That would make it easier to spot diseases.
    • Jul 5 2011: It is true that we overweigh the curative treatment more than preventive measures, whereas it should be the other way round.
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    Jun 30 2011: Be honest with the doctor and listen carefully, but also trust your own intuition. With advances of science today, sometimes I cannot imagine how some doctors could be negligent and make mistakes. In serious cases when you have doubts and the doctor does not seem to be calming you, ask for second opinion.
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    Jul 22 2011: I've had great doctors who respect me, and horrible doctors who don't. I always approach a new doctor with an expectation that I will have to train him/her about ME. S/he may know generalities and 'norms', but I know myself. I know my capabilities, and know my needs. I educate my doctors about what side effects I can and cannot live with, my values, and when approrpiate, do my 'homework'. Patients also need to understand that doctors are first and foremost a human being,and that means that mistakes will be made. Unless those mistakes are negligent or a result of incompetence, we have to let our health care partners know that we understand this.
  • Jul 18 2011: Thank you for sharing that story Ed, it reminds me of something. The first thing we can do to help Doctors is to lower our own defenses against them. The next is to help them lower the defenses of other patients. Once this is accomplished we can begin to enter into a shared relationship and that's is what we need to do to help doctors. If everyone were to do this, their job would be much easier, treatment would be more accurate and nobody would feel uncomfortable. We must have comfort with our doctors and not think they are more than we are, I am on a first name basis with my doctor and I requested that it be that way, she agreed. She calls me by my nick name to comfort me and I call her by her first name to lower her defenses and show that I see her as nothing short of human. I found that with this method she really cares for me and it's much more personal. Thank you again for sharing the story, active listening is an art and one we all need to learn, after all it's never about us with a patient.

  • Jul 17 2011: One easy tool is to share the records together. There is so much in this that can cause distrust over inaccurate nfomationi. The book aboot simple list helping in surgery was so right. My mistakes are caught. But until the patient has control over records with medical facility, trust is so often broken. Transparonsy would help the patient know what , if any are conflict of interest.. Ex.-pain dr invested in rehb.. Truly, not all are humanitarian in motivation..
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    Jul 7 2011: Patients are already building care communities around their specific problems. I am involved with a new model for academic medicine. We are working on building care teams around specific patient problems- obesity, hernia disease, breast disease, etc. The patients and their family members can be valuable assets to help work with our care teams to learn and improve as we define and implement the care processes for each patient-centered team/community.
    I believe we need to evolve beyond the current system structure of the individual physician practice model and the hospital hierarchy and vertical department (silo) model. As mentioned earlier in this discussion, the amount of medical information being generated has made it impossible for one human being (a doctor) to keep up, especially in a broad specialty like primary care or general surgery. It is not realistic to continue to practice as an individual physician. By working in teams, we can continuously learn and improve. By focusing on the patient's horizontal cycle of care processes, we will be able to define, measure and improve the most important process- the process that a patient goes through when suffering from their particular problem. Participation of the patient and their family is a critical part of this model.
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    Jul 6 2011: Ability to observe daily life and communicating it to the physician is very important but not easy. We are expert of our own life but can we collect sufficient data about it? My personal opinion is no. If we can know/record about our daily life properly and present it to a clinician neatly, that would improve decision making for both sides.
  • Jul 5 2011: Enjoy this discussion.

    Personal opinion: Anytime someone becomes completely dependent on another when capable of making their own choices, they become handicapped in some way. Mutual problem solving and respect is imperative as has been previously posted
    • Jul 6 2011: There is no doubt about it.
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    Jul 2 2011: @ Sulav in reality I saw most doctor have very little time for her/his patients where even the minimum level of relation can't be built and they don't / can't bother about that.

    The picture is as below for patient

    Waiting time : 1-2 hour.
    Time with doctor- maximum 5 minutes.

    In such case even a serious inquiry from patient makes doctors impatient.....!

    May be your experience is different but what I am saying is from my experience in 4 different countries with different economic level (from highly developed to poor) , different healthcare system (advanced to archaic). Picture is almost same everywhere. Exceptions are there in any given place at any given time but that can not be the example.

    Moreover now a days in many countries treatment decision is no more at the control of doctors, to great extent it went to Pharmacists, Hospital administrator, regulators, insurers & politicians , everyone has got their own motive, while Patient has only one motive that is her / his own well being.There are lot of options for same thing , patient's seldom have the chance to choose. When anyone is buying even food they can choose but here it's not the case. You might say, it's too technical for patient to decide such thing, which I politely disagree, now a days people are buying far more technical things like computer, mobile phones being completely non technical and here the question is about personal well being or even life and death. Moreover plenty of resource available in net as mentioned by Dave, so anyone can have those.

    Patients can help doctor by being more informed and demanding for the attention for which they paid for at least.
    • Jul 5 2011: @ Salim - I completely agree that patient should inform themselves. It is the first step toward helping your doctor. :)
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    Jul 2 2011: Sulav,

    To answer this question from the negative side, a recent study (http://www.medscape.com/viewarticle/546878) of the patient behaviors neurologists found "bothersome" were: 1. no show for appointment 2. verbally abusive with staff 3. poor compliance with medications or treatment 4. late for appointment 5. do not know the medications that they are taking. Of the 30 items, those behaviors as well as answering cell phones during office visits and unnecessary phone calls after hours were among the most highly rated as bothersome.

    IMO, even these "complaints about patients" can actually be interpreted as a shared failing at best. Understanding the reasons why a patient misses an appointment might reveal that trying to schedule an appointment when it is convenient to the doctor, not the patient, makes the likelihood of showing up on time more difficult for someone that is sick. Verbal abuse to staff members should be analyzed more thoroughly - is this a boiling over of frustration with a medical system, or just rudeness? Having worked on both sides of the desk I am amazed at the level of routine rudeness in healthcare professionals - they don't even know they're doing it.

    Being late for appointments is a pretty rich complaint coming from docs, last time I was in a hospital bed I was left there until the doc caught up on his paperwork! Items 3 and 5, related to medication understanding or medication compliance, are a failing I lay squarely at the feet of the healthcare profession. You mean the patient failed to understand he's taking a sodium channel blocker? What a numbskull! Doesn't he know how important that is to increasing the seizure threshold in his temporal cortex? No, he doesn't, because he didn't go to med school, you didn't convey the required information adequately, and you didn't make sure he was supported by information, not just medication, when he left your office.

    I would propose the best thing a patient can do is be more demanding =)
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      Jul 3 2011: Dear Paul,

      While you raise several important points, I think you fail to appreciate what pressures/demands lie on the other side of the equation. This is a little biographical, but bear with me here, it's to illustrate a point. I am a physician (a paediatric surgeon, to be specific) in Canada. I have spent 4 years in medical school, during which time I was on call in the hospital every 4th night.I wrote countless examinations. I then spent 6 years in residency where I was on 1 in 4 up to 1 in 2 nights. I worked between 80-100 hours per week. I then completed a fellowship in my field, when I worked 1 out of every 2 nights for two years, still averaging 90 hours/week. I am now 1 year in practice, and work 60-70 hours per work. I usually start at 7am and don't leave before 5pm. I am now on call 1 in 5 nights. I have graduated with a significant debt, and have sacrificed much of my youth to become a physician.

      My story is not unique. It reflects the fact that becoming a competent doctor is... hard. Do I want sympathy? No. I am extremely fortunate to have risen to a place of such extreme responsibility.It is a privilege to do what I do, and I wouldn't trade it for the world. But sometimes I feel that a little respect is deserved. A patient is never concerned with the well-being of their health-care provider - they have their own health to worry about. But when speaking in the abstract, I think it deserves remembering that physicians are human too. They are subject to the same fallibilities as everyone else.

      Perhaps the next time you are made to wait, or the victim of an unkind word, you'll try and consider the perspective of the other before jumping to conclusions that may not be deserved. It's a lesson I try and practice every day.

  • Jun 30 2011: To answer your question of how patients can aid in the process for improved outcomes. If we were able to break the fear barrier and have a patient stand in their truths, accept the truth for what it is and utilize it to create a plan the patient believes they are capable of complying with- we would have a good start. We might learn what the true barriers are to the success and may learn what the patient truly wants to accomplish.
  • Jun 30 2011: I think more importantly is how can doctors help thepatient help themselves taking into account todays system? Doctors and nurses and the whole team?