The Inspire Q&A: Inspire talks with Howard Luks, MD

Dear Inspire Community Members,

We at Inspire are pleased to bring you the latest in a series of Q&A interviews with people we feel are making contributions to helping patients worldwide. We are posting these interviews in a Q&A format in my Journal as a news feature for members of all communities on Inspire.

I recently interviewed Howard Luks, MD, who writes and speaks frequently on topics related to patient empowerment, improving physician/patient communication, and healthcare social media. Luks is a board-certified orthopedic surgeon, an associate professor of orthopedic surgery at New York Medical College, and also chief of sports medicine and arthroscopy serve at University Orthopedics, PC and Westchester Medical Center in New York. He blogs at http://www.howardluksmd.com/. One of his recent columns, written for physicians, was titled, The Risks of Not Participating in Healthcare and Social Media.

Inspire: How do you think patients can best communicate what they’ve learned from online research to their clinicians?

Luks: What I fully support and recommend is that my patients either email me any relevant information that they find that they think pertains to their case, and most certainly, to print out any interesting articles or data they may find, or any discussion threads they believe are relevant, and bring them to the office, so we can sit there and review them. I have two chairs sitting next to the computer screen in my office. One of for me, and one is for the patient. I believe that’s probably very rare.

Inspire: How about for patients of physicians who only have one chair in front of the computer, and who are disinclined to have those kinds of discussions with their patients?

Luks: While there are a number of physicians who choose to engage in this manner and are recognizing and appreciating the value proposition of digital media engagement, there are still a lot of physicians who are resisting this. So, patients have the opportunity to walk. Patients have the opportunity to seek out a physician who is willing to engage them, who is willing offer them a means of communicating with them digitally once the patient leaves the four walls of the physician’s office, so it extends the physician’s reach and availability well beyond the realm of their office space.

Inspire: Patients do have choices, but wouldn’t you agree that making that kind of change can be scary and difficult, especially for patients who are seriously ill, or who have rare diseases?

Luks: It can be difficult, absolutely. But if you’ve had a well-established and long relationship with your physician, then I think your physician will feel that too. And that patient has a much better chance of convincing that physician to engage, either with simply a Web site that is full of actionable and meaningful content, or to engage in social media, or through means of digital communications. So, the better your relationship, the better chance you have of convincing your physician to engage with you. Patients drive physician behavior. It’s well known in the medical device world, and I imagine that will transcend to the digital world as well in terms of communications, outreach and education.

Inspire: You’re considered an evangelist among physicians on the topic of healthcare social media, and you interact with fellow physicians at medical meetings and in online forums. How have you answered criticisms by physicians of patient empowerment through social networks and online research?

Luks: As recently as a year ago, they were different conversations than I have now. You’d get a lot of eyes rolling into the back of their heads, and a lot of skeptical looks, and they just didn’t believe you or understand you. They didn’t truly understand the world of social media, digital media, and most still don’t. Now, while many don’t understand the space, they do understand their relevance going forward is certainly at risk if they do not at least start their due diligence process.

Inspire: And what is the nature of those conversations now with physicians?

Luks: Now what I talk with physicians is that this is about relationships. I tell them that this is about stories. We treat patients. We don’t treat x-rays or MRI findings. So, I want to know as much about my patients, their disease and how it affects their quality of life, as I possibly can. And sometimes, the office environment for them is quite scary, and imposing, and they don’t remember what they wanted to ask, and it’s not until they are on their way home before they remember. And it’s very well known that patients forget about 75% or 80% of what they were told when they leave their physician’s office. So, first, I have cards and pads so they can write things down. Physicians are starting to realize that it helps us regain or recapture those relationships that older physicians had with their patients. They knew their patients. They knew their patients had a recent baby, or that they just bought a new house, that they moved, or they got a new job, or got a puppy, or whatever. Having a relationship with your patient in that respect for some is special and meaningful. And I talk all the time about non-verbal cues and non-verbal communication. And that’s very important. I can tell a lot about how someone feels just by looking at them. But I can also learn a lot about them by what they have to say on either my Web site as part of a comment or testimonial, or on my Facebook or Twitter pages as well.

Inspire: Even so, many physicians are reluctant to become engaged in this manner, even a little bit.

Luks: True, a lot of them are fearful of the exposure and legal risk and also the time commitment, and thus, a perceived cost. The cost argument can be thrown out because patients are researching online. They’re researching and diagnosing themselves through WebMD and then they’re searching for physicians who have expertise in that particular area. If you choose not to engage, then I feel that is to ignore your own relevance as a healthcare practitioner.

Inspire: What you’re saying is that patients are online anyway, with or without your direction or consent?

Luks: Exactly. A lot of physicians believe that digital media is a passing fad. And during my talks now I frequently quote that whether you agree with this trend is not particularly relevant. It is occurring. It’s gaining an enormous amount of traction. It is growing by leaps and bounds. So, I’m not telling a physician to share with patients where he’s eating or what movie he’s at, or if he’s at a birthday party and eating chocolate cake. That’s what a lot of physicians think of the world of social media. And a little education goes a long way.

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59 replies. Join the discussion

Excellent dialogue here, John and Dr. Luks. Coincidentally, I had just posted a very similar article on my blog 'Heart Sisters' this morning, too: http://myheartsisters.org/2012/04/09/a-second-opinion-from-dr-google/

I love the idea of those two chairs facing the computer in your office! I suspect, however, that this set-up is so rare as to be virtually non-existent outside of your particular orthopedic surgery office, Dr. L. I'd love to see that change. In fact, many patients bemoan the fact that when their doctor does have a laptop in sight, his/her eye contact is then focused directly on the screen rather than on the actual real-life patient sitting in front of them.

When I first saw my orthopedic surgeon prior to knee surgery some years ago, the reality was that our "relationship" was very brief, as many acute medicine encounters with specialists commonly are. I knew going in that I was merely his 10 o'clock torn meniscus, not actually a living breathing person with whom he was interested in any kind of "relationship"! And that was okay - as we say in our family: "You don't have to go camping with him!" I was there only because of his reputation as a skilled surgeon.

He WAS treating merely the MRI and x-rays, not me as a whole person. Contrast that to my current "relationships" with my GP, cardiologist and pain specialist; as a heart attack survivor with many ongoing cardiac issues, I now see these folks on a very regular basis. Patients with chronic diagnoses may indeed have more opportunity to tell our stories, as you say.

But still, are physicians more open to hearing those stories? The reality is that with rushed visits, overflowing waiting rooms and backed-up appointment schedules, I still often feel like merely the 10 o'clock appointment.

Thanks so much for this thought-provoking essay. I only wish you weren't preaching to the choir - doctors need to read this, too.

regards,

Carolyn Thomas

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Inspire goes a long way in educating patients, particularly the lung cancer forum. The information and experience provided defies the condescending attitude shown by most physicians when explaining the disease and potential options for treatment.
There is the ART of Medicine and the SCIENCE of Medicine, the best physicians have the ability to blend the two.

G

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Thanks for the excellent article. I've been very proactive in my own care for many years out of necessity. I recently got a new PCP and we're still meeting on a monthly basis, as she wants to know more about my complicated medical background. She has the computer right on her desk and I have a chair right next to that desk. We also make great use of "My Chart" whereby she can send me lab results, and appointment instructions, and I in turn can e-mail her anytime as to how things are working or if something new has come up. Guess that may be one of the perks of living out in the country, just out of a town of 2900 population.

Best regards,

BonnieKay

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Patient input and participation in one's care are extremely important. As a physician who was diagnosed with throat cancer I encountered many instances where my physicians failed to diagnose my condition and my input was instrumental in improving my care. That input often came from information I found on the Internet.

My experience as a patient taught me the limitations of medical knowledge and experience of many of my colleagues. They simply do not always know all the answers or do not think about them. It is left to patients to help themselves by searching for the right answer. It is also essential to remember that even those of us who have medical knowledge should only assist the experts in treating us and not do it alone.

Itzhak brook MD
Blog site: http://dribrook.blogspot.com/

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Excellent piece, though in my limited experience most doctors are not ready for this level of interactivity with their patients. My GP has used a secure doctor-patient email system for several years, but none of the specialists I've seen do. I will ask my oncologist tomorrow about emailing questions to him prior to our appointments. It would be so much more productive.

I've been dx'd with an extremely rare, aggressive type of ovarian cancer that no one knows much about -- even at the top cancer centers. Yet I was actually told not to bother with the Internet early on in my treatment. In reality, I have to do my own research to stay on top of new developments. The OCNA community on inspire.com has been an invaluable source of information, both anecdotal and scientific.

I will live by the statement "Patients drive physician behavior" to see what changes might be encouraged... The simple truth is that no one else is going to invest as much time and attention into my family's healthcare as I am.

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This inspiring Q&A offers hope for patients and physicians. Yet, to Dr. Luks, I'd like to ask: is it possible to bump these concepts "up the food chain" to quicken the pace of conversion? I'd love to hear that medical schools are churning out empowered physicians eager to revolutionize health care through social media. Or, that individual specialties are involved in spreading the adoption of these methods -- maybe even as part of certification boards or as CME credits.

Bottom line, it's the physician who holds the power in this relationship, no matter how engaged we patients are. The key to a new age of doctor-patient collaboration is compassionate, empowered physicians.

Katherine Leon

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It's so refreshing to see doctors who understand that patients can access information on the internet and be informed. My own physician did not feel that way and I am now considering looking for another.

One suggestion to a comment Dr. Luks made. He pointed out that many patients forget 75-80% of what they hear after they leave their appointment. Why not ask about recording the session so that you can go home and listen again to what the doctor said. This helps formulate questions for the next appointment so that the same questions are not asked at each visit. It allows the patient to be sensitive to the doctor's valuable time.

I have made this suggestion to families in my support group and they have found it really helpful and doctors seem to appreciate it,.

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"Patients drive physician behavior"

I just attended a seminar with a prominent doctor at MSK and the conclusion of the Q&A was his thoughts about the importance of being a "good patient" .. and it wasn't about "behaving" either.... He made some great suggestions....

I applaud Dr. Luks. Thank you for this!

AnneMarie

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Great topic, and very good responses.
I wish things were as simple as "patients have the opportunity to walk" or that "Patients drive physician behavior." Personally, I believe it is the insurance companies and pharmas that rule our medical industry, but that is just me.

A physician's typical 15 minute appointment slot barely covers enough time to do a patient history, physical exam, review labs, order tests and write scripts. Patient counseling, internet research and wow, emotional support maybe? all fall under "unbillable services." And billable services are what drive most practices, especially when reimbursement for office visits from insurance companies, Medicare and Medicaid are dwindling.

Those doctors who do manage to accomplish a truly comprehensive visit with their patient, either run over their schedule or do it on their own time. And there are many incredible physicians out there, it sounds like you are one of them, Dr. Luks. These women and men are our heroes. And that makes them the 'go to docs,' and their reputation is why their offices are usually overcrowded...Because they take the time to treat the whole person. Novel concept...

"Walking" is not so easy with most insurance policies nowadays, worse without any insurance to then pay upfront for a new specialist usually. And you risk losing critical diagnostic/treatment time only to find the next doctor may be as unresponsive to a collaborative relationship as the last. Most appointments are during the day, so work and sick time are lost rapidly in this process. So, patients without unlimited resources and time are a captive market...This is why the internet is our new PCP...

The medical system is not broken, it is disfunctional, especially in light of the new proclamation by the medical community saying most diagnostic testing is overused, unnecessary and should be restricted. Well, if you don't have a thorough history, or know your patient well AND track them, then please do a CT scan or an MRI - especially as diseases like lung cancer and brain mets often go undiagnosed without these tests...Lots of us look perfectly healthy on an xray that can't detect lung tumors...My husband who passed at age 58 learned that the hard way.

I too hope that many doctors will engage in this important conversation. And fight for a system that takes the time to treat patients with dignity, as well as respects patients who research their illness as 'informed consumers'...Isn't that what you do when you buy a house or invest in the stock market - research? Why should patients be any less educated about their health...?
Most people do anything necessary when the stakes are high - critical care, life and death illnesses, chronic pain that goes undiagnosed, etc. No one should be dismissed for being proactive when it comes to fighting for their life...
Thank you for this insightful forum.
Peg

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This is a great article and when you listen to what Dr. Luks is saying, if you don't have a doctor who is computer-literate and willing to share either what they find or you find, then it's time to change doctors.

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"So, patients have the opportunity to walk."

Some patients belong to HMOs where that opportunity is limited.
Some patients belong to Medicare or Medicaid where that opportunity is limited.
Some patients have no insurance and 'walking' to another doctor would cost them a lot, usually more than they can afford.

As mentioned earlier---- some patients are too sick (and too financially strapped) to do that. Add a 'rare' disease to that------- not do-able on many fronts.

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I think this is INCREDIBLY IMPORTANT for MAST CELL DISEASE and AUTOimmune DISEASE.




THANK YOU

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I agree some people feel they can't walk due to financial concerns, No insurance but a Dr that lets them make very small payments or a long time. Been there many times. While I was there I never walked but my mother did. She would get on the phone and call she would write letters to Doctors and she walked. I just walked from a Doctor who i have had for years and 2 new ones. It was empowering to do so. My new Doctors were told how I wanted things to be and we worked out how we would interact before told to disrobe and get in the paper hospital gown. I got a chance to tell them what I wanted and it made them feel good about telling my what they wanted. I fell it is going to be a good relationship. I enjoy reading this and learn a few thing to keep in mind.

Thanks

JM

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Great interview. Dr. Luks is right that "patients drive physician behavior." Given the accelerating rate at which social media and other digital tools are being integrated into medical care, it is only a matter of time before Dr. Luks' model becomes the norm. Every generation defines the tools required to become the standard of care. Resistance is futile! ;)

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It is a shame that here in the UK you dont have the choice to change physician unless you can afford to go private and the NHS here in general is not interested in anything you have to say or what you may have found on the internet.

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You are most welcome and glad you enjoyed it.
Howard Luks

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And that happens to be a tough "art" to teach ... some learn by working with mentors... others docs simply understand and practice in this manner. I wish it were more widespread.
Howard Luks

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Many docs are "getting there" ... and it's my hope to assist them! But patients can alter physician behavior. Doctors are notorious for fighting to maintain status quo, etc. Unless there is a groundswell which drives this (patient demand) then you are correct... little will change.

Thanks for your comments
Howard Luks

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"Patients drive physician behavior." I'm walking away from my GI MD after major debacles by his staff (no apologies from anyone; no calls from my doc), seeing him ONCE - in the procedure room after a harrowing night in the hospital being prepped, discharged with a bunch of printouts; no appointment scheduled..NO HUMAN HUMANE DOCTOR TO TALK TO ME. I had to make an appointment to see this MD at his office just to get him to talk to me, because the chief complaint was not addressed, & was still affecting my activities of daily living. I had a list of questions, but I watched his body language (he was squirming a lot), & caught him in 2 lies (things he had told me before we scheduled the procedure.) I have to find another doctor, but I'm on Medicare, & on a fixed income, so if patients drive physician behavior, this doctor I'm dropping was driven to treat me like dirt because my insurance wasn't the best. I paid all the money Medicare didn't, but he knew how I felt about this test-the prep which almost did me in last time he did the test; somewhere down the line he flipped from a caring healer to an inaccessible liar, & I still wear Depends underwear; the test was a colonoscopy; the prep was done in the hospital the day before & was so bad I will NEVER GET ANOTHER COLONOSCOPY AS LONG AS I LIVE!!! Also, if I was a betting person (which I'm not), I would bet real money that his support staff get BIG LAUGHS from the misery of the different ailments surrounding the lower intestine. Oh..mental illness is funny also, right?
Throw some psychiatrists on a psychiatric ward for 2 weeks unable to leave..this should be required before licensing of all psychologists & psychiatrists..let them be patients & live as patients in a locked ward..watch people walk out; hear the door click shut, & you STAY. Patients drive physicians behavior. Right. MONEY drives physicians behavior. It's all in the luck of the draw.

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Thank you so much Dr Luks!

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