About the author:

Howard J. Luks, MD

Howard J. Luks, MD

A Board Certified Orthopedic Surgeon in Hawthorne, NY. Dr. Howard Luks specializes in the treatment of the shoulder, knee, elbow, and ankle. He has a very "social" patient centric approach and believes that the more you understand about your issue, the more informed your decisions will be. Ultimately your treatments and his recommendations will be based on proper communications, proper understanding, and shared decision-making principles – all geared to improve your quality of life.

14 comments on “Should Empowered Patients Be Considered *Experts*?

  • I appreciate this perspective. My father-in-law has a rare disease, and my mom-in-law has spent so many hours researching the disease. As they encounter new residents, she is frequently required to educate them about the specifics of his condition.

    I think that we as health care providers need to see educated patients as partners, not a threat.

    • I agree all people should be aware of there health conds and read up on it inpower your self so when sein your doctors you have the power to take about what you need and the kind of care you deserve
      I Have SYSTEMTIC SCLERODERMA AND WITH THAT I HAVE PULMONARY HYPERTERISION Ra and connective tissue diorders this Rare disase has NO CURE THERE OUR PEOPL OUT THERE THAT GET A DIAG: EVERYDAY WITH THIS SCLERODERMA there more then one type the ones who haveSd that affects the skin and makes it tight and ra of the fingers and handsand ulsers of the leg anlkes and fingers and then there CREST/ diffused and limited and systemtic that Affects you major organs the kinneys the rt side of heart the liver and disgestive systemthe esophagus and with that come PAIN all over stiffness and liver damage due to having to much COLLAGEN IN THE BODY I NEVER HAVE A WRINKLE / BUT I WELL NERVER BE BETTER i HOPE AND WISH FOR A CURE AND ALSO RUN A SITE FOR PPLS AND THERE FAMILYS WITH SD i give info. and support to others to try and help them thru all of the pain and hep them know i ‘m there to help in way i can/ MY WISH FOR ALL PPLS IS GOOD HEALTH AND HAPPINESS THNAK YOU SANDY FLORIDA

  • Sure, well-informed patients should be considered experts. Their expertise is widely complementary to that of healthcare professionals, and will become more important in improving efficiency and speed of translational research, fulfil the needs of QoL data in health technology assessments. They can explain the value and barriers of participation in clinical trials and hence will influence recruitment (or non-recruitment in bad trials). They are actively helping some research groups to improve their “informed consent” documents today. By picking up trial results and treatment guidelines and taking them to their doctor, patient even make state of the art more widely known in daily medical practice, especially on rare diseases. They are the ones that will help the community to improve on the challenges of therapy adherence and uncoordinated CAM use.

    So all in all, patient advocates are experts with a very complementary knowledge – this should be more widely acknowledged.

  • Yes and no.

    I have met medical students who are so brilliant that they seem to know the contents of entire textbooks of the top of their head – but this still doesn’t give them everything they need to make good medical decisions. Knowledge is very important and necessary, but does not replace experience. e-patients can get a lot of knowledge, and also experience as it applies to themselves, but are generally still going to lack some elements required to make the best decisions on their own. We all need to work together to find the best ways to treat each patient.

    • I totally agree. I have Sarcoidosis and have had to deal with many trips to the hospital. I have had to explain this to many medics as they haven’t heard much about this disease and are quite fascinated.
      Whilst I have done countless hours of research on the topic and found alot of the information useful I totally agree that it is a two way relationship that should happen. I need my DR’s insight, his attention to those details he knows through experience that I purely just am not exposed too.
      Good Dr patient relationships are essential. My DR is great and has the patience to listen to me and what I have found/researched. He is a leading professional in his field and his aim is to find a cure for this horrible condition.
      We need to work together taking into account the DR’s valuable experience and the patients contribution as it is their body.

  • From patient perspective.. I am only an expert in myself but very knowledgeable about my condition. I would never presume to tell a specialist what to do or what’s best option… but I am happy to educate him/her on what I have learned about how my disease and how it affects me. For example – 3 weeks post 3rd ACL it was obvious to me, the expert in my own body, that something was not right. Which being an empowered patient (who has already suffered from one nosocomial infection) sends me back to my doctor asap- aka the expert in all things that can go wrong or right with my particular anatomy and procedure. Alas as a patient you can only be as knowledgeable and empowered your doc will let you. Run up against an arrogant one and you end up with Staph sitting in your joint capsule three weeks longer than necessary.

    It’s a delicate balance… but I have found that so many aren’t even willing to listen to “patient experts”. There is so much mis-information out there (I get daily Google alerts that I can only roll my eyes at sometimes) but I am sure many patients INSIST that they know best or the internet tells them so it MUST be true! If I was a Doc I’d start to tune it and all patients out… (I worry about when I actually get to practice as an RD– everyone is an expert in what to eat!!!) So much about decision making regarding one’s health has to do with education and time and patience and umm… well, healthcare doesn’t exactly have a lot of that to spare currently.

    So to sum up as a patient… I prefer to be thought of as empowered but would never claim to be an expert. You guys don’t go to med school for fun. :)

    • I agree with you Sarah. It is a balance because someone may be a relative expert but they certainly can’t be allowed to decide course of action based solely on their knowledge. While patients may help in providing a different and human perspective on a disease it’s still not enough. We joke how sometimes there are three people in the call: the doctor, the patient and Dr. Google. We hate Dr. Google and diagnostic tools because the results vary greatly and provide far fetched possiblities to patients.
      While we do listen to patients we’ve learned to discriminate which opinion may be valuable. People with chronic conditions are usually the best ‘experts’ simply because every situation is usually approached as been there, done that. That doesnt mean we’ll ignore you but it won’t be the same

      Chronic patients are empowered and Dr. Google is not an expert

  • Howard,
    Thanks for this post. As a patient that has experienced chronic pain for almost three years, being forced into becoming an “empowered patient” was not an empowering experience. There is so much information ‘out there’ and as a non-clinician I feel that no matter how much research I read about my condition, there is a point where I can only understand it to a certain level with out going to med school. When I asked my doctor about this research she had not read it, nor would she give me feedback or direction on resources I had read or where to find more quality information.

    My point is, technically, because I research my conditions etc. online and find communities of people dealing with similar symptoms I am more empowered than a patient that does not access information outside of a doctor’s office or visit, but that has not lead to me feeling empowered as a patient with the information that I need.

    • Agreed. My current knee doc actually told me to lay off the PubMed. He was really nice about it, but I was kind of self-medicating with it… He was so right, I needed to stop reading so much. I don’t have the knowledge base to understand it all and in fact, I only know enough to know I really don’t anything. Still I like to be informed- especially with regards to what is coming down the pipeline and where the future is with regards to tkr and cartilage but immersing myself in it? Not good for my mental health.

  • “Analysis Paralysis” is always a possibility… as is Confirmation Bias… another post from a few weeks ago. Researching any topic takes patience and skill. It does not come easily and you should not stop your pursuit. The biggest issues is that the vast majority of information available online is very poor in terms of quality and actionable or meaningful content. There is a lot of bias, commercialism, sales, etc…. Use your *friends* online to help you vet the information. Digest it and prepare it so you don’t walk into an office and overwhelm your doc. We in the #hcsm crowd are here to help!

  • “I think that we as health care providers need to see educated patients as partners, not a threat”

    I agree with Ann’s quote. I have stage 4 lung cancer and spend hours researching my disease on line with others with the same type of cancer. I had heard about the latest research being done and all kinds of supplements that are benefiting cancer patients. I was dx twenty months ago with stage 4 lung cancer and I am still extremely active, going to a bicycle spin class tonight, hiking this weekend and mountain bike riding in Moab, Utah in May. Even though I have excellent doctors I don’t feel I would be where I am today if it wasn’t for an active participation in my recovery and treatment.

  • As a 15-year leukemia survivor who went online to connect with more experienced patients I am a BIG believer in the empowered patient and yes, how we can have real expertise in our own disease. I acknowledge the comment above, however, about how daunting the information online can be. That’s why I will call to your attention my just released, first of its kind book, The Web-Savvy Patient: An Insider’s Guide to Navigating the Internet When Facing Medical Crisis (www.websavvypatient.com) The book isn’t only a way to surf the web for what’s reliable and screen out what’s not – although that is essential. It then helps people know how to use this information productively with their doctor in partnership. That’s the key. The doctor is a valued consultant. You respect him/her and their time. But they need to respect you as a thinking person who wants to get well.

  • Nice post. I wish I didn’t need to be an “expert” in osteomyelitis.

    I learned about the disease when my dad was in the hospital post ankle fusion. Although I requested, hospitalists refused to contact the orthopedic surgeon (who was two floors downstairs) to consult on a severe pressure sore on “that pokey out ankle bone.” That was August 2008. A month post discharge, I contacted dad’s orthopedic surgeon because the wound was horrific. Osteomyelitis.

    I learned the hard way that orthopedic surgeons rely on infection disease physicians to get rid of the infection. Lack of communication between the two specialities in the same medical facility and, long story short, dad died of complications of osteomyelitis in January 2010.

    Seven months later (July 2010), my orthopedic surgeon (different state than dad’s) finally agreed to remove painful hardware in my leg from a 2004 HTO. Simple surgery but the wound never healed. In September 2010, I was diagnosed with tibial osteomyelitis at the same place where dad underwent treatment and died. My September 2010 surgery was not successful. The wound never healed.

    I read about osteomyelitis in order to be able to care for my dad. I quit my job and cared for dad 24/7 first struggle with cancer and then after the cancer was controlled, I cleaned every pin on his external fixator and took him to ever PT to overcome osteomyelitis. I gave him push antibiotics for as long as Infectious Disease ordered.

    But when I was diagnosed with osteomyelitis, dead tibia, draining sinus, extraordinary pain – doctors are offended by my questions and push me out the door. I am scared because I saw dad die not so long ago. But apparently I know too much or ask too many questions because I have struggled alone for six months. What healthcare crisis? I have private health insurance, I am a compliant, pleasant, respectful patient . . . but I cannot find an orthopedic surgeon that knows how to treat osteomyelitis.

    And so I know just enough about the disease to know it could take my life (as it did my dad a year ago). But I don’t know enough about osteomyelitis to be able to save my own life.

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