The next step

Go to the edge of the cliff and jump off. Build your wings on the way down.

--Ray Bradbury

D.A. Freccia: You're a pretty smart fella.

Joe Moore: Ah, not that smart.

D.A. Freccia: [If] you're not that smart, how'd you figure it out?

Joe Moore: I tried to imagine a fella smarter than myself. Then I tried to think, "What would he do?"

--Gene Hackman, Heist (2001)

It’s smarter to be lucky than it’s lucky to be smart.

--Charlemagne “War is a Science” Pippin (1972)

I don’t think I’m jumping off a cliff – and I know I don’t have any wings, at least not yet – but I am taking a leap into something new, different, and exciting, and I want to share the news with all of you today. Beginning December 3, 2014, I will be leaving my current position in the breast cancer program at the Kimmel Cancer Center at Johns Hopkins and beginning a new full-time position as Medical Director of the Institute for Quality of the American Society of Clinical Oncology (ASCO) in Alexandria, VA. I will help lead and support a number of key programs that make up ASCO’s quality portfolio, including the Quality Oncology Practice Initiative (QOPI), the QOPI Certification Program, and the revolutionary and ambitious CancerLinQ project, among other ASCO quality initiatives. The ASCO Board of Directors and CEO Dr. Allen Lichter recently made the decision to bring on board to the ASCO staff a physician to provide medical oversight for this key area. I am deeply honored to be the inaugural person selected for this position.

ASCO’s vision for the future of oncology, well articulated in the 2012 document “Shaping the Future of Oncology: Envisioning Cancer Care in 2030” is one that really resonates with me. ASCO believes that all patients with cancer should have access to high quality care and that the information learned from every patient should accelerate the progress against cancer. ASCO has identified health information technology, particularly the ability to collect and analyze vast amounts of big data, as a key driver to achieve this vision. I couldn’t agree more. For the past 23 years that I have practiced clinical oncology, patients and families have come to me for my expertise in what is often the most overwhelming crisis of their lives. They may be full of fear and anxiety, but they are all hopeful for cure, while expecting compassion and respect. As a clinician, I know that the only thing that really matters is the needs of that patient in the exam room across from me, and my primary responsibility is to help them navigate the shortcomings of our byzantine and often-insensitive healthcare system, to deliver to them the right diagnosis and the right treatment, based on the best possible evidence and shaped by their own preferences and values. To do that, I need access to data, information, and knowledge of a complexity and quantity that was unthinkable when I graduated from medical school in the 1980s. To get this access, oncologists need tools that can’t be discerned in the Google searches and social media streams of today, as critical as the Internet is to medicine – let alone the medical libraries and Index Medicus of the last century! ASCO’s rich portfolio of quality programs, which started with QOPI, an oncologist-led, practice-based quality assessment and improvement program that launched in 2002, through today’s eQOPI and the growing library of practice guidelines, to tomorrow’s CancerLinQ rapid learning system, will continue to be foundational in providing oncologists with some of these needed resources.

I’m joining ASCO now as a full time employee because I’m passionate and optimistic about the future of our field, and I want to devote the rest of my career to enabling this change. I’ve not been blessed with unique or extraordinary vision, but I think I can see what it is going to take. We need to create a world where medical practice consistently reflects unfettered access to meaningful data; where clinical care and discovery co-exist and enrich each other; where oncologists discover new knowledge not only from the 3% of patients who bravely enroll on clinical trials but from the routine care experiences of all; where the documentation of such care experiences is freed from proprietary electronic systems – currently shoehorned into the rough and inflexible mandates of the meaningful use requirements (as necessary a first step as they were) –  and shared freely by all; where delivery is not constantly undermined by the specter of the perverse incentives of quantity-based reimbursement particularly “buy and bill;” where the amazing advances in panomics are allowed to flourish and inform today’s care processes and not exist only as vague promises of “precision medicine;” and where patient-centered care is something we all are proud to deliver, not just to satisfy next month’s Press-Ganey surveys, but because it represents the fundamental passion and dedication of our profession as physicians.

Will I be able to do all of these things as an ASCO Medical Director? Lordy, I’m going to need a lot of help! I’ve experienced oncology in both private practice and academics, so I know all too well the challenges of transformation and how disappointment oft rules. But I think I’m smart enough to associate myself with some very smart people, and I’ve been lucky enough in my career – blessed in fact – that I’ve been able to enjoy a wonderful, fulfilling practice environment and the collegiality and camaraderie of superb colleagues everywhere I have been. So I think this “leap” – from the familiarity of a single institution to a visionary, mission-driven organization like ASCO and this work blending quality, clinical medicine, and information science – is not just the next step for my professional development but something that feels positive, natural, and just right. I’ll build the wings later.

My Hematology/Oncology Grand Rounds at Memorial Sloan-Kettering Cancer Center 2/4/14

I was honored to be asked by ASCO President Dr. Cliff Hudis (@cliffordhudis on Twitter) to give Grand Rounds at Memorial Sloan-Kettering Cancer Center in New York on the topic of social media, on Tuesday Feb 4 at 8:00 am EST. The title of my talk is "Connectivity, Collaboration, and Disruption: Social Media and the Oncologist." As I did with the last few talks I've given, I created a special hashtag "#msk_hcsm14" which I will use to create a live Twitter stream that I hope more than a few people will follow and respond to during the actual presentation. Also, using Tweetdeck, I pre-scheduled a series of tweets with the hashtag to be posted during the presentation, containing many of my references and few additional links to extend the talk. While I don't really think anyone will be fooled into thinking that I am live-tweeting in the middle of my presentation - not that I and others haven't thought about it - I find this a fun and educational technique to try to jumpstart online dialogue. And after the session is over, I will create a Storify of the collected tweets to share with the audience.

I know a few MSKCC doctors on Twitter, but I don't know how active they might be during the presentation. I don't think the level of interactivity you see at large meetings like #ASCO13 or #MedX is very common at smaller sessions like this, but there is always a first time!

So if anyone is reading this, feel free to join in the online Twitter conversation starting about 7:45 am on Tuesday 2/4/14. Be sure to save this hashtag and spread the word. Thanks.

#msk_hcsm14

Addendum 2/6/14:

I have posted my slides for my talk to SlideShare.

The Storify for the hashtag #msk_hcsm14 is here.

Spread the word and keep the convo going!

Podcast: Practical Guidance in the Use of Social Media in Oncology

This week we posted a podcast for ASCO's Journal of Oncology Practice on the topic of social media in oncology practice. This was based on an article that was published September 2012 in JOP, co-authored by several members of the Integrated Media and Technology Committee from ASCO. I currently chair that committee and was honored to be included as an author. Three of the article's contributors joined me for a stimulating 45-minute conversation about the power (and perils) of using social media from the viewpoint of an oncology professional, incorporating as well how a professional society like ASCO employs these tools. My guests were Dr. Don Dizon (@drdonsdizon), a medical oncologist at the Massachusetts General Hospital Cancer Center specializing in women's cancers and female sexual health, Dr. Mike Thompson (@mtmdphd), a medical oncologist in community practice in Wisconsin with an interest in hematologic malignancies and clinical trials, and Claire Johnston, Social Media Manager for ASCO.

You can listen to the podcast here on the JOP website, or this link will bring you to the iTunes store (you can also just search "Journal of Oncology Practice" on iTunes and find it that way). Also, please take a moment to read the full JOP article.

The conversation was wide ranging and covered many important points, including:

• Why social media has become such an important form of communication in health care these days and the different ways physicians might use social media (patient care, health messaging for a lay audience, and professional networking/knowledge-sharing)
• What are the special considerations for social media in the field of oncology in particular, compared with other medical specialties
• What issues are raised when patients try to engage with their physicians using social media
• What basic themes and principles we learned by examining the social media policies from about 35 other organizations ranging from the AMA to different hospitals and medical centers
• What role social media plays as a member benefit and a communication/engagement tool for a professional society like ASCO
• What special precautions must be kept in mind if you are using social media to spread the word about a clinical trial and improve recruitment

Hope you take the time to download the podcast and listen to it at the gym or driving to work! Your feedback is always welcome, either here or on the iTunes page.

Engage With Grace

Thanks to Matthew Holt (@boltyboy on Twitter), founder and publisher of The Health Care Blog, for allowing this to be shared. A more important conversation cannot be had with family and loved ones this Thanksgiving. --Bob Miller

By Alexandra Drane

Once again we're hosting the annual Engage with Grace blogrally. Engage with Grace aims to get people talking about their wishes for end of life and advanced care. If you want to host this on your blog please do and feel free to get the html for this post here --Matthew Holt

One of our favorite things we ever heard Steve Jobs say is… ‘If you live each day as if it was your last, someday you'll most certainly be right.’ We love it for three reasons: 1) It reminds all of us that living with intention is one of the most important things we can do. 2) It reminds all of us that one day will be our last. 3) It’s a great example of how Steve Jobs just made most things (even things about death – even things he was quoting) sound better.

Most of us do pretty well with the living with intention part – but the dying thing? Not so much. And maybe that doesn't bother us so much as individuals because heck, we’re not going to die anyway!! That’s one of those things that happens to other people….

Then one day it does – happen to someone else. But it’s someone that we love. And everything about our perspective on end of life changes.

If you haven’t personally had the experience of seeing or helping a loved one navigate the incredible complexities of terminal illness, then just ask someone who has. Chances are nearly 3 out of 4 of those stories will be bad ones – involving actions and decisions that were at odds with that person’s values. And the worst part about it? Most of this mess is unintentional – no one is deliberately trying to make anyone else suffer – it’s just that few of us are taking the time to figure out our own preferences for what we’d like when our time is near, making sure those preferences are known, and appointing someone to advocate on our behalf.

Goodness, you might be wondering, just what are we getting at and why are we keeping you from stretching out on the couch preparing your belly for onslaught?

Thanksgiving is a time for gathering, for communing, and for thinking hard together with friends and family about the things that matter. Here’s the crazy thing - in the wake of one of the most intense political seasons in recent history, one of the safest topics to debate around the table this year might just be that one last taboo: end of life planning. And you know what? It’s also one of the most important.

Here’s one debate nobody wants to have – deciding on behalf of a loved one how to handle tough decisions at the end of their life. And there is no greater gift you can give your loved ones than saving them from that agony. So let’s take that off the table right now, this weekend. Know what you want at the end of your life; know the preferences of your loved ones. Print out this one slide with just these five questions on it.

Have the conversation with your family. Now. Not a year from now, not when you or a loved one are diagnosed with something, not at the bedside of a mother or a father or a sibling or a life-long partner…but NOW. Have it this Thanksgiving when you are gathered together as a family, with your loved ones. Why? Because now is when it matters. This is the conversation to have when you don’t need to have it. And, believe it or not, when it’s a hypothetical conversation – you might even find it fascinating. We find sharing almost everything else about ourselves fascinating – why not this, too? And then, one day, when the real stuff happens? You’ll be ready.

Doing end of life better is important for all of us. And the good news is that for all the squeamishness we think people have around this issue, the tide is changing, and more and more people are realizing that as a country dedicated to living with great intention – we need to apply that same sense of purpose and honor to how we die.

One day, Rosa Parks refused to move her seat on a bus in Montgomery County, Alabama. Others had before. Why was this day different? Because her story tapped into a million other stories that together sparked a revolution that changed the course of history.

Each of us has a story – it has a beginning, a middle, and an end. We work so hard to design a beautiful life – spend the time to design a beautiful end, too. Know the answers to just these five questions for yourself, and for your loved ones. Commit to advocating for each other. Then pass it on. Let’s start a revolution.

Engage with Grace.

Alexandra Drane is the Founder of Engage with Grace

ASCO guidelines for breast cancer follow-up: Solid science & rational skepticism

The American Society of Clinical Oncology (ASCO), the primary professional society representing doctors who care for people with cancer, periodically publishes guidelines for common clinical situations encountered by oncologists. The ASCO guidelines are a summary of best practices based on the latest and most thorough analysis of the scientific evidence currently available. ASCO creates its guidelines using a very rigorous and time-consuming workflow by first identifying and analyzing relevant research findings, crafting them into a format that is practical and accessible for patient care, and then submitting them for multiple layers of editorial review. By comparison, guidelines from the National Comprehensive Cancer Network (NCCN), an alliance of 21 different leading cancer centers, including my own institution Johns Hopkins, are created by panels of disease experts based on their consensus opinion. Both processes have a lot of value and are widely used, and to some extent they complement each other. The NCCN guidelines are much more numerous than ASCO's, and they not only address the treatment of different cancers by primary site but also cancer detection, prevention, risk reduction, and supportive care. NCCN also provides a version of their guidelines for patients. The ASCO guidelines are fewer in number than NCCN and deal with more selective situations, and in part this is due to the different methods used for their creation.

Why are there guidelines for the management of cancer in the first place? The most important reason is that it's a way of standardizing clinical care for common tumors, and since the guidelines are created by recognized experts from respected organizations like ASCO and NCCN, there is usually little controversy that they represent best practices based on the most current knowledge. Here's a good description from an article by Drs. Irwin and Peppercorn in the November 2012 Journal of Oncology Practice entitled "Promise and Perils of Guidelines in Quality Cancer Care:"

Such guidelines are currently used to encourage high-quality, evidence-based management that will increase the use of proven interventions while curtailing use of those that lack evidence or are known to be ineffective.

As the authors point out, some evidence exists that adherence to guidelines improves patient outcomes, although that is harder to prove than you might expect. No doubt, guidelines can serve as a deterrent to inappropriate and/or costly, unnecessary care, and they potentially offer physicians protection against medicolegal risks. The authors also cite some theoretical risks of standardized treatment guidelines, which you can read in the full text of the article.

ASCO recently updated their guidelines for the follow-up care of patients with breast cancer who have completed their primary therapy, whether that is surgery, radiation, chemotherapy, or hormonal treatment, or some combination of these. Basically, the population addressed is the very large number of women (and a few men) who have completed the active phase of treatment and who have no evidence of disease, "NED" in oncologist-speak. Generally these are patients who are treated with "curative intent," meaning that their therapy was delivered with the reasonable  expectation that it would result in complete eradication of the cancer. Unfortunately, we know that does not always happen, and recurrence after primary treatment, sometimes many years later, is an unfortunate and feared event. Given how prevalent breast cancer is and how the majority of patients do end up going through one of these life-altering treatments, it is critically important to have some guidance as to the most appropriate follow-up care. These guidelines address such things as how often a patient who has completed all treatment should be seen by her doctors, what lab tests and imaging studies are recommended, and what advice patients should be given. ASCO first created these guidelines in 1997 and updated them in 1999 and 2006; this is the 2012 update. Here are the relevant links:

• The abstract of the early release article from the Journal of Clinical Oncology published online 11/5/12 (shout out to the 3 Johns Hopkins co-authors, Dr. Antonio Wolff, Dr. Tom Smith, and Elissa Bantug, herself a young breast cancer survivor who coordinates our breast cancer survivorship program)
• The full text of the JCO article 
• A summary slide set
• A surveillance flowsheet in Excel format (also available as a PDF)
• Links to Cancer.Net's patient guide on the topic

Let me try to summarize the most important recommendations. The key point is that this 2012 guideline is identical to the 2006 version, which is to say that the ASCO panel, after looking at all of the published literature between 2006 and 2012, did not identify any research findings that warranted a change in their recommendations from 2006. The foundation of follow-up for patients with early stage breast cancer treated with curative intent should be periodic clinical evaluations (i.e., doctors' visits) and mammography. The frequency of recommended follow-up visits decreases as time goes on, from every 3-6 months for the first three years, to once or twice a year for years 4-5, and annually thereafter. The follow-up care should be provided by practitioners experienced in the surveillance of breast cancer (i.e., knowledgeable about the manifestations of cancer recurrence and late effects of the treatment) and comfortable with the physical exam of the breasts, especially the irradiated breast. Note that it doesn't say this has to be an oncologist necessarily, although hand-offs between oncologists and PCP's are discussed, and the practitioner is not required to be a physician, as mid-level providers working with physicians are often quite expert in this role. The guideline gives some recommendations about the frequency of mammograms which you can read at the links above. The importance of educating patients in the signs and symptoms of cancer recurrence is mentioned, as is the importance of regular gynecology follow-up.

As was the case for the identical 2006 version, the part that this 2012 guideline addresses that I think will generate the most interest is what is NOT recommended, which is basically all blood tests (including CBCs, chemistry panels, and tumor markers such as CA 27.29) and all imaging except breast imaging. So specifically all chest xrays, bone scans, CT scans, PET scans, and ultrasounds are not advised. To be clear, the recommendation against performing this type of testing applies to the patient that is in surveillance mode, who is coming in for a regular follow-up visit and who by definition does not have any specific symptoms. ASCO is not suggesting that doctors should forgo this type of testing as a way of evaluating a specific concern like a new symptom (say, back pain) or physical finding (such as an enlarged liver detected by the physician). Good medical practice would dictate just the opposite.

This is not a surprise, and the research supporting this has been around since the mid 1990s. And let me say as a breast cancer oncologist, I support this and have generally been practicing this way for many years. Those studies from the past basically showed that an intensive surveillance strategy of regular imaging studies and labs, when compared with a more conservative approach of periodic physical exams and mammograms alone, did not show any real advantages. The vast majority of recurrences were identified not by imaging tests, but by a symptom the woman herself notes or a physical finding the physician identifies on physical exam. Survival rates were the same between the patients followed more aggressively and those followed more conservatively, and quality of life was not any better. Yes, intensive surveillance and testing did identify more recurrences earlier, usually by no more than a few months, but it did not translate into higher cure rates or even fewer complications. Since metastatic breast cancer is incurable, all the early testing did was identify metastases a few months or so before they declared themselves either by a symptom or a physical finding.

And to take this a step further, this idea of not doing surveillance testing on patients with early stage breast cancer in the follow-up phase made it onto ASCO's Top Five list for the American Board of Internal Medicine Foundation's Choosing Wisely campaign - five commonly used practices that can and should be questioned since they are costly and lack medical justification. I cover this in a blog post from a couple of months ago.

But if there ever is an issue that I find problematic in my clinical practice, and one that raises delicate issues of patient empowerment and autonomy, physician authority and adherence to evidence-based medicine, and doctor-patient communication, it is this one. This issue about not performing certain tests is one that causes understandable tension with many of my patients, since at face value it seems illogical and inappropriate. Why wouldn't you want to detect cancer earlier? How could it be that would not improve outcome? And even if there was some uncertainty about that, why should ordering a simple blood test be an issue since the harm is perceived as minimal and potential gain great? Let me run through a few aspects of this issue that contribute to making it so challenging:

1. Oncologists used to do this for breast cancer patients. Yes, that is very true. When I was doing my fellowship in the late 80s I think some of the regular testing was starting to wind down, but I do recall that getting annual bone scans and liver ultrasounds - and certainly "routine labs" like chem panels - was accepted without much question.
2. Oncologists do this these days for patients with other cancers. Yes, very true as well. For example, there is very good evidence that monitoring patients with colon cancer who have had primary surgery +/- chemo with CEA blood tests and periodic liver CT scans, improves outcomes by identifying liver metastases early, thereby permitting potentially curative resection of the liver lesions.
3. Some oncologists do this these days for breast cancer patients. Also very true. I see a fair number of patients who receive their care outside of Johns Hopkins, and it is not at all rare when I review their records that I can tell their doctors are ordering CA 27.29 blood tests every few months for monitoring. In fact, a rising tumor marker in the absence of any other positive findings is a common reason for referral to an academic medical center like Hopkins. When I try to diplomatically explain that this was a test that we probably wouldn't have ordered here, the patient is often confused and conflicted, particularly since that fact is irrelevant as far as they are concerned if it suggests that there is a potential problem (which I totally get).
4. The downstream consequences of false positives and enhanced anxiety are not trivial. What is not always easy to appreciate is how a relatively lousy screening test like the CA 27.29, with less than optimal specificity and sensitivity, may open up a whole range of problematic issues - over-interpretation of trivial xray findings, misattribution of physical symptoms better explained in another way to "the cancer," and the endless cycle of repeating scan after scan to follow up on an equivocal abnormality. 
5. Even though patients may intellectually understand #4, many still want these tests done for whatever assurance they can provide, and they are willing to risk the false positives. Again, I am quite sympathetic to this viewpoint which many of my patients articulate to me. But I see how it can go either way - the test can be "negative" which is reassuring for everyone, including me as the oncologist who usually is the one who ordered it, or it can be abnormal or equivocal, leading to more testing. And when the patient now finds herself on the receiving end of the latter, it's much harder to deal with that scenario than it is in the abstract.
6. Patients just want some reassurance that they are ok. The doctor asking you questions and doing regular physical exams, in this modern era of sophisticated imaging and labs, isn't very reassuring. At the completion of adjuvant chemo and radiation, virtually every patient asks me, "How do you know it worked?" In other words, how do you know I am ok? How will I be monitored to know that I remain ok? It's so disconcerting when I have to say that we only really know if chemo didn't work, and we have no way of proving that it accomplished what we wanted it to do. It's very understandable that patients want some objective evidence that they are cancer-free. That's why they are naturally inclined to expect that some type of testing - not the word of the oncologist, even when the trust factor is very high - will offer them that reassurance.
7. A negative test means that based on the performance characteristics of that test there is no evidence of cancer at that time. So a relatively insensitive test (e.g., a chest xray) offers a small degree of reassurance that everything is ok, at least in the lungs, but it is only as good as its ability to discriminate a lesion large enough for it to detect. So a chest xray is likely to miss a 4 mm lung nodule, something that is much easier to see on a CT scan but at the price of a much higher exposure to radiation. But even a CT or a PET scan or whatever the latest imaging test to come will be has a shelf life - a negative PET scan in January does little to reassure anyone in October.
8. It is increasingly being recognized that radiation from diagnostic imaging is not good for you, and it probably increases your risk of cancer a small amount. While this is true, it does seem a little incongruous when an oncologist uses this line in someone that has just gone through 20 weeks of chemo and 6 weeks of radiation which themselves can, ahem, cause cancer. I'm not trivializing the risk, but I understand some patients find this "justification" for not ordering a screening test a bit of an odd juxtaposition.
9. It is possible that a physician ordering a blood test or especially a more expensive study like a PET scan may have a financial stake in the matter, which could theoretically cloud his/her judgment. Doctors who are part owners of facilities that do PET scans or labs that run chemistry panels may benefit financially from these tests, to a greater extent than an employed physician like me, who gets $0 for any test I order. But let me say that having spent the first 17 years of my career in a private practice with an in-office lab, it is hard to believe that even subconsciously that would have influenced my decision to order a chem panel, and of course, if I really followed the guidelines, I would be going against my own financial interest. However, when this potential conflict of interest exists, it does raise the question as to why there are such variances of practice.
10. Where do cost and the ethical principle of justice fit in here? Talk about a thorny issue! When I advise a patient not to undergo a PET scan for the primary purpose of reassuring them that they are ok post-treatment, I am not doing it primarily to save dollars. In fact, that is the furthest thing from my mind in the exam room. In essentially no cases right now (and this will change with ACO's - accountable care organizations) is an insurance company telling me not to do it. At least if they deny coverage, it is transparent and the patient knows right away. But where do you draw the line? It's incredibly easy for me to order a lab test because a patient or family insists, even if I am not convinced it is medically justified. While I have a responsibility to act in good faith, for a cancer patient I can almost always "justify" a lab test for the payer. But should I? If I order a test on every patient who insists on having it done, costs paid by someone will escalate. And if thousands of my colleagues do this all over the country, it will easily be hundreds of millions of healthcare dollars spent. Should those limited dollars be spent on testing that does not improve patient outcomes, like PET scans that identify an incurable lung metastasis 4 months before it declares itself, even though it would not affect treatment decisions one bit? Or should they be spent on something better, like co-pay assistance so people don't go bankrupt paying for potentially curative treatments like Herceptin?
11. Am I really sure of the data? I started this by saying that the ASCO guidelines represented best practice. But evidence-based medicine is hardly static. It changes all the time. While no study to my knowledge has ever shown that periodic measurement of serum markers like CA 27.29 or the Circulating Tumor Cell assay used in some places affect outcome, I am pretty sure these specific issues have not all been addressed in randomized controlled trials in systematic fashion. I noted that none of the 14 manuscripts the ASCO panel looked at to update these guidelines between 2006 and 2012 specifically address these tests as a primary variable. Is it possible that some combination of lab or imaging tests may someday reveal better quality of life or even greater longevity for more heavily screened patients, especially as our treatments improve? Hardly implausible.
12. And finally, doesn't this focus on guidelines impair the trust between the doctor and patient by making the care less individualized? Doesn't the physician's judgment enter in at some point? Do guidelines always have to be followed? My answers are - yes it certainly can and does; absolutely; and absolutely not. No physician should be worshipping at the altar of "guidelines" without a thoughtful examination of their strengths, their flaws, and the needs of the patient in front of you. Medicine and certainly oncology will never be a cookbook science, and the imprecision and variability of some of these issues is as maddening to doctors and patients alike as it is inevitable.

My bottom line - I think the ASCO guidelines being discussed here are rational, reasonable, solid, and as good a blueprint as we can hope for in 2012 for this specific clinical issue. They are also as flawed and incomplete as virtually everything else in clinical medicine. I have used them as a starting point for discussion and education with my patients. Usually that goes well, but it is a process not without its tensions at times. I have tried not to draw a line in the sand, but I can think of a few occasions where there was an impasse that we could not bridge. There are few absolutes here. It's not always as straightforward as simply doing whatever test or procedure the patient wants. That's not patient-centered care. Just as I've failed if my reasoning is dogmatic and opaque to my patient, I've also failed if I do something that my training and judgment tells me is incorrect or improper. I hope and pray I can continue to grow in wisdom to make the best decisions. I need input not just from expert ASCO panelists that create these guidelines, but from the real people - my own patients - who are living with breast cancer and trying to make some sense of the madness. And if any of you have read this far, I would love to hear your comments on this blog post. Your insights are always welcome and instructive.

Diabetes, metformin, and breast cancer

A number of interesting connections between obesity, diabetes,  the diabetes drug metformin, and breast cancer have been discovered in recent years. It has been known for some time that obesity is an adverse prognostic factor for breast cancer. For example, obese women have a higher risk of developing breast cancer compared to normal-weight woman, and women who have been treated for breast cancer who gain a lot of weight after treatment have a higher risk of recurrence than those that do not. The exact mechanism is not known, but it is thought that naturally-occurring insulin may play a role, since obese women tend to have higher levels of insulin and have relative insulin resistance. Additionally, women with diabetes who take metformin, a widely used agent to control blood sugar, may have a lower risk of cancer. This was shown in a recently published study in the Journal of Clinical Oncology. A large population-based clinical study called the Women's Health Initiative (WHI) looked at 68,019 women between 50-79 who did not have breast cancer at baseline. Of these 3,401 had diabetes at study entry. Women with diabetes treated with medications other than metformin had a slightly higher chance of developing breast cancer. By contrast women with diabetes treated with metformin had about a 25% lower breast cancer incidence. It is possible that metformin produced this finding by diminishing some of the effects that insulin-related cellular pathways had on cancer cells.

So does this mean that we are ready to prescribe metformin in women without diabetes as a treatment to lower the risk of breast cancer? No. However, this question is being studied in a large international clinical trial called MA.32 in which women without diabetes who have been curatively treated for breast cancer with surgery, with or without radiation, chemo, or hormonal therapy, are randomly assigned either to the drug metformin orally twice a day for 5 years or a placebo for 5 years. Interestingly, in non-diabetic women, metformin does not seem to cause much hypoglycemia (low blood sugar) as you might expect, and thankfully there are not a lot of other side effects. We won't know the results of this important study for a number of years, but if it does show a benefit to metformin in reducing breast cancer recurrence risk further, this old, widely-used, and inexpensive medication may be added to standard cancer therapies. This trial is available at Johns Hopkins for eligible patients.

Why I think online access to the biomedical literature is one of the most important advances in science & technology of the past 30 years

It's the 200th year anniversary of the venerable New England Journal of Medicine, and they have been running a series of articles noting seminal advances they have published over the last two centuries, as well as forward-looking prognostications about the future of medicine. It made me think of the most important advances I have witnessed in my 20 years as an oncologist, and I am not restricting it to therapeutics. Examples that immediately come to mind for me, in completely random order, are filgrastim, 5-HT3 receptor antagonists, imatinib, rituximab, PET imaging, cloud computing, and social media. We all tend to be drawn to top ten lists, be it the top articles from 200 years of the NEJM, the top clinical papers of 2012 so far, the most clinically important genomic discoveries affecting patient care, or the top hospitals in the U.S. (a painful subject for us at Hopkins ever since that…ahem…medical center in Boston nabbed the top spot). But IMHO, thinking back over the last 20-30 years, you would be hard pressed to identify a series of advances with greater impact and a more amazing evolution than what has occurred in the area of information retrieval, especially search, as it applies in particular to the biomedical literature. 

I remember when I was working in a lab as an undergraduate in college in 1980 and needed to learn something about H2 receptors (we were studying the effects of cimetidine on lymphocyte blastogenesis, of all crazy things), I went to the intimidating medical library at University of Virginia and pulled down these massive copies of the bound Index Medicus, which was a catalogue of all - yes, that's all - of the published scientific literature. So you would find the article you were looking for (sort of, since this was in the era before hyperlinks), and then you went to the stacks, located the bound copy of the journal, and trudged back to the copy center where you paid $0.05/page to copy your reference. And you couldn't be sure your copy was always going to be legible, since the binding was often so tight you had a large vertical blurry patch on the edge of every page where you couldn't totally press the book against the glass. Things were marginally better when I was in medical school and residency in the 80's, since there was a librarian who could run searches for you. For those of you too young to know what I am talking about here's the way it worked. You decided what terms you wanted to search ("breast cancer" AND "thiotepa" NOT "intrathecal"), submitted your request to the medical librarian, who may or may not have been any help in refining it (often not), paid the fee for the search, then…waited and waited. Sometimes it was two weeks before you got the results, which were usually displayed in these huge sheaves of continuous computer paper (the kind with the holes down the sides) printed on a dot matrix printer in faded grayish ink. Half the time - probably 80% of the time - you realized then that the terms you searched weren't right and most of the references were irrelevant, but you were either too broke to pay another fee to run a different search or you didn't have another two weeks to kill waiting for the results.

Then the 90's came and with the growth of the Internet, online searching became a reality. But it was nothing like today where searching is real-time and free of charge. There were several different methods to access the PubMed database, but many were associated with either an annual fee or a per-search fee. So unless you had an unlimited institutional account, you had to be judicious about how much searching you would do. And you often needed to use some type of front end software to access PubMed like Internet Grateful Med, which had its own learning curve and quirks. You still had to go to the library to actually read the full text of the article you retrieved, since full text online was not a reality in the early days. Storing results was another issue, since formats were not standardized and PDF's were just penetrating into biomedicine.

I remember how amazed I was when the PubMed database became totally free to use, having lived through the hassles of the previous eras. The fact that you can now construct and execute an endless series of online searches with instantaneous results using a web browser still amazes me today. Even better, access is not restricted to health professionals. Patients and families now have access to the same literature database as I do, and this dissemination and democratization of knowledge, in my opinion, has done more to improve patient engagement and enable true patient-centered care than almost anything else. It is why I say that the evolution of information retrieval of the biomedical literature is one of the greatest advances affecting medicine over the past 30 years. Of course, there still are some critical barriers to overcome, such as access to full text articles for all, better use of metadata to search, and the all-important semantic deficiencies of the web; i.e., you can search by a given term, but if you really don't know what that term means, the computer often can't help you, since humans are still needed to interpret the information retrieved. (For more on the idea of the semantic web see here.)  Considering how far we've come since I was an undergrad in a lab in 1980 trying to teach myself pharmacology, I am pretty optimistic it won't take another 30 years to achieve this level of data integration and reusability. 

Inflection points

I've been blessed with many opportunities in life, and while I can't say if I had the chance to replay my career in medicine I would do it exactly the same way each time, I am very satisfied with the path I have chosen (or has been chosen for me). I thought I would explain some of the interesting phases and changes of my career as an oncologist by focusing on a few key inflection points. I realize now, 27 years after med school graduation (geez, that number makes me sound incredibly ancient), how different my career and my family's life experiences would have been if a few of these points had turned in another direction.

The first was when I opened the envelope on Match Day in March 1985 and learned that I would be doing residency in Internal Medicine at UC San Francisco, my first choice. (Trivia question, how many of you remember your rankings for your residency choices in the match? I believe my top 5 in order were UCSF, Yale, MGH, University of Washington, and Case-Western.) While I was very honored albeit very surprised to be accepted into such a prestigious program, at the time I seem to recall my greatest source of happiness was the fact that a good friend and housemate would also be doing his residency in the Bay Area, at the naval base. At that point, I had lived my entire life in Virginia, including college at UVA (where my sister, dad, and grandfather were all alums) and med school at MCV in Richmond (now called VCU). So moving to the West coast as a single person at age 26 and starting the scariest and most intense training of my life was a huge change. How different life would have been if I had matched in a program in the East or elsewhere, considering I then went on to live in California for the next 24 years, met and married my wife there, and raised all three of my kids in Sacramento.

Going to Stanford for oncology fellowship in 1989 was another important inflection point for obvious reasons. Ironically, my first choice was actually Johns Hopkins…except they didn't offer me a slot. Let's see now - Baltimore vs. Palo Alto, hmmm. Guess I landed on my feet. (I love telling this story to Hopkins fellows and residents these days.) Although I went into fellowship assuming I was going to have a career as an academician and clinical researcher, for a number of reasons, mostly personal and family-related, I chose to go into private practice in Sacramento in 1991, where I stayed for the next 17 years. And I might have continued to have a very unexceptional but rewarding career as a community oncologist if it weren't for a few other inflection points. I didn't realize it at the time, but one was in 1995 when I was nominated to be a board member for the Association of Northern California Oncologists (ANCO), the ASCO state affiliate for northern California. I can't even remember if there was an election or not, but serving on the ANCO Board, eventually becoming VP then state society president, afforded me numerous opportunities to understand some of the regulatory and reimbursement issues facing my colleagues and work toward improving our professional lives and indirectly the welfare of our patients. I have no recollection of how I was even nominated, but if that hadn't happened, I am doubtful that I ever would have gotten involved in "medical politics" or anything much outside of my own medical practice in Sacramento.

This may sound strange, but another inflection point was when U.S. Robotics introduced the first PalmPilot in 1996 (then called "Pilot"). I was always a gadget freak and had enough knowledge about personal computers to be truly misinformed, but when I saw the first prototypes of these PDA's, I knew I had to have one and use it in my daily routine as an oncologist. One thing led to another, and eventually I became recognized as an expert of sorts, mostly through reviews and columns I wrote for PDAMD.com, ASCO Online, and other websites. So that led to another turning point, in about 2004, when ASCO President-Elect Dr. Sandra Horning, one of my mentors when I was a fellow at Stanford, asked me to chair the ASCO IT Committee. At the time, there were quite a few older, more tech-savvy, and experienced oncologists whom she could have chosen - I've worked with most of them over the past 10 years in ASCO-related IT endeavors - but I am still deeply appreciative of the trust she placed in me. And it is probably true that my experience as an ASCO Committee Chair and my prior position as a state society president contributed to my nomination and eventual election in 2006 to the ASCO Board of Directors.

One of the stranger inflection points was how I became involved in social media. I've shared this in my talks before, but in approximately 2007 ASCO was experimenting with blogs and social networks, and at the time, as Board liaison to the ASCO IT Committee, I was charged with trying to legitimize this and make it more palatable to the ASCO Board. Historically the Board had been hesitant to officially bless something as potentially wild as social media with the ASCO name. Personally, I had a high level of skepticism when this was starting out. And that's how I began experimenting with Twitter, since I knew I had to take one for the team and make it work for myself, if ASCO was going to endorse it.   The rest is history - along with most other professional societies and non-profit institutions, including most academic medical centers, ASCO is widely recognized for its social media presence including its Facebook page, Twitter feed, and the award-winning blog and social networking site, ASCO Connection.  And for me, oddly enough, I find myself doing research and giving talks on social media and medicine, including upcoming Medicine Grand Rounds at UC Irvine in October 2012. If you had told me in 2006 that my last three papers accepted to peer-reviewed journals would be about Twitter and social media, I would have questioned your sanity.

Finally, my current position at Johns Hopkins which I assumed in 2009 obviously was another inflection point, due to a fortuitous combination of timing and having just the right contacts. At the time, I was becoming increasingly unhappy dealing with the business pressures of being a self-employed physician in private group practice, which was squeezing the joy out of medicine and requiring increasing vigilance to counteract some of the local pressures my group was facing. I was thinking I might look at a job with an EHR vendor or perhaps a chief medical information officer position with a hospital system. But I wasn't quite ready to give up clinical medicine yet. Then, in December 2008, I saw an ad in JCO that Johns Hopkins was looking for a clinician in the breast cancer program. Although I wasn't confident I had the credentials they were seeking, I approached Dr. Nancy Davidson, with whom I was serving on the ASCO Board at the time, to learn that, unbeknownst to me, the position was opening up because she was leaving Hopkins to go to Pittsburgh, and they needed an oncologist to take over the load of seeing new breast cancer patients. But even better was when I learned during the interviews that they also wanted someone to assist with the implementation of their electronic health record…and well here I am.

Here's what I learned from these experiences. It's easy to identify the big changes - matching at UCSF in 1985 and being offered the position at Hopkins in 2009 are obvious examples if for no other reason than the sheer geographic upheaval (subject for another blog post perhaps). But many of the inflection points were much more subtle, and I couldn't possibly have anticipated the downstream implications. If some kind soul hadn't offered up my name as an ANCO Board nominee in the mid-1990's, I'm not sure I would have necessarily gone in that direction. If Sandy Horning hadn't asked me to become an ASCO Committee Chair, I'm not sure I would have taken on progressively greater leadership responsibilities in a professional society like ASCO, as I was quite content at the time seeing patients in the community practice setting. And considering I am not a member of the stereotypical Facebook generation, if I hadn't delved into Twitter for the sole purpose of experimenting with it on behalf of ASCO, perhaps today I would be regarding social media as just another cultural phenomenon that does not particularly affect me. It would have been completely normal, expected, and unremarkable for any one of these events to have gone totally in another direction, and my career and family life could have been so very different.

I have been blessed with these wonderful opportunities, for which I am eternally grateful. Part of the excitement of what I do every day is wondering if the next seemingly unremarkable event, collaboration, engagement, or new technology, is going to turn me in some other unexpected direction. Never boring!

Genesis

Don't let the perfect be the enemy of the good.

If I sit through another meeting (usually something related to EHR implementation) and hear that quote, I think I'm going to…well I don't know what I am going to do, since everyone seems to be saying it and acting like they thought it up themselves. But that quote, supposedly paraphrased from Voltaire, partially explains why I have finally decided to put aside all of my reservations and actually go ahead and start a blog. A physician blog is hardly unique or interesting any more, but for me, with my increasing involvement with social media (and some level of visibility), the time is right to do this. To be more accurate, I have already been contributing to a blog on ASCO Connection for a few years now, and even prior to that to one of ASCO's first forays into social media, which was an EHR-focused blog on the Ning platform, which ASCO later migrated to ASCO Connection. I have contributed to ASCO Connection a few times a year, although I definitely feel far eclipsed by Don Dizon, Mike Fisch, George Sledge, and others, who are writing great blog pieces that have helped propel the ASCO Connection site to greater prominence, including a recent national award, a 2012 Apex Award for publication excellence. In other words, even though I was one of the first, these guys do such a great job, they should continue to carry the freight, and I'll probably just continue as a part-timer.

And let me say a word for and give a shout out to George Sledge in particular. I got to know George a little bit when we were both on the ASCO Board of Directors, and it's not an exaggeration to say he is the real deal - interesting and articulate guy, extremely well read with a broad range of interests, a brilliant scientist and clinical investigator, and as far as I can tell from the outside, a truly compassionate physician. But not only that, he is a great writer and really elevated the content and quality on the ASCO Connection blog pages. (Hey George, I'm not slurping you for any hidden reason, just to make this point.) I frankly don't know how he has the time to create these long and nuanced blog posts for ASCO and for Oncology Times, but they are always a great read. So…I knew I couldn't keep up, particularly with the length. Which is one of the reasons I realized it would be best for me to write my own blog - so here it is. Don't worry, Amy Fries and ASCO staff, I'll still post to Connection, although I will probably post it to this blog first and share.

So here is what I would like to do with this blog and a little more of my motivation for creating this. One of my main purposes is to allow me more space to share ideas than I get in 140-character Twitter posts. People who know about my social media activity of the past few years know that I am active on Twitter, and much to my surprise but also satisfaction, have 2000+ followers and growing (and some aren't spambots). But Twitter is all about quick bursts of information and instantaneous sharing, and not about thoughtful content creation. This blog will allow me to share articles, news stories, and other items I find online, that I am currently sharing on Twitter, but on a blog, you just have more "room." Sentences, not just phrases - what a luxury! And you can write in English, not in SMS-speak (Gr8 articl 2 read abt lng ca - blah blah blah).

Another reason to blog is to engage more with followers, more than what you can do with Twitter replies. I intend to enable comments on the blog and when I feel up to it, respond and engage in dialogue, although I don't have the time for a lot of argumentative back and forth, which is not my style anyway. Social media is always primarily about community and connection; a blog will help facilitate that. And I think it will also help people who read me to understand more of the life and experiences of an oncologist and informaticist (there's that word), particularly someone who has been doing this for 20+ years. Not that I think anyone is particularly interested in me as an individual, but sharing on social media is also about sharing who you are and what values you hold. In another post I will talk a little bit about my career and what led me from the East coast to the West coast and back again, and from private practice to academics. Again, not because I think it is particularly interesting to many people, but it helps define my current perspectives.

[Addendum 3/27/13: Re blog comments, I've learned after 6 months of having a blog that unfortunately a lot of comments are spam. There is a way to filter out a lot of them which I am doing. However, even if you get by the spam filters, I don't intend to publish comments where the primary purpose is advertising a specific service unless it has general applicability. That is true even if you have a legitimate medical practice or service. My blog is not free advertising for you. Sorry.]

Another reason I want to blog is purely selfish. I need to learn to write more quickly. I was an English major in college in a different century, and for all of my career, even in private practice, I have been doing a lot of writing and editing. And I think I am fairly talented in this area, I will say in all modesty. But I am definitely not fast, and the hardest thing I ever have to do is to start a manuscript. I sit and dawdle and waste time on the Internet and a million other things. A blog won't cure me of my procrastination tendencies, but if I am really going to make this work, I have to post regularly, and I don't have hours of extra time to do that. So another example of not letting the perfect become the enemy of the good.

A few other thoughts about what I want this blog to be. I expect I will blog about what I cover on Twitter right now, mostly my professional interests. These, of course, include medical oncology, particularly breast cancer, biomedical informatics and health IT, patient-centered care especially as enabled by consumer health informatics, and healthcare-related social media. I may share experiences about clinical practice, but will never give specific medical advice (that is why you have your own oncologist or PCP, and it ain't me), and I will never blog about a specific patient, at least not in any way that could lead to the identification of an individual. Patient privacy is a sacred trust, and not just because of HIPAA, but because it's what our patients absolutely expect of us. So if I talk about clinical practice, it won't be about what happened that day, but it might be about something long ago, where details have faded, or it might also be a composite of several patients or situations, so that no links to real patients can reasonably inferred.

I am going to try very hard to post a few times a week. I expect that many of my posts might be fairly short, since one of my main purposes will be to share articles or other items that my readers can explore themselves. I think that shorter, more frequent posts will be more effective for what I hope to achieve here, and that practice will certainly be a better discipline than slaving over a 1500 word blog post that takes 3 weeks to write. Again, I'm not going to let the perfect be the enemy of the good, or at least the adequate.

Finally, this isn't going to be pretty, at least not to start. Don't look for clever polls, beautiful graphics, or lots of widgets. I am just starting to play with the Blogger tools, and one of the reasons I chose Blogger over Wordpress was that Blogger is much simpler to configure. It's the words that matter. Sorry, if you want fancy, you will have to read a professional.

So here goes. I can safely say that no one will read this post the day it goes up, since I decided not to promote the existence of this blog until I can convince myself it will happen. But perhaps over time, just like it happened for me with Twitter, a community will develop and maybe I can accomplish something unexpected.