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.

An Epic narrative

My professional life at Johns Hopkins has been largely consumed in recent months by preparations for the implementation of the Epic electronic health record (EHR) system. Our so-called "Ambulatory First" go live for all outpatient Hopkins clinics in the Baltimore-DC area begins 4/4/13 with the scheduling and registration system and then swings into full gear with the clinical roll-out of the EpicCare EHR at Green Spring (where I practice) on 5/16 and in East Baltimore at Johns Hopkins Hospital clinics on 6/27. If you've ever been part of a major EHR go-live at a hospital, clinic, or office, you know what a monumental undertaking this is and why "consumed" doesn't really do the experience justice. For Hopkins, we are transitioning from many years of doing things a certain way using a huge variety of legacy and/or best-of-breed electronic systems for data capture and analysis, including some homegrown ones and in some cases paper records, to a single, enterprise-wide, vendor system. It will impact every aspect of our clinical operation and touch everyone who works here, not just those in patient care. While I'm confident we will emerge in a much better place, I am not looking at the coming months with much joy.

Hopkins is doing this for all of the right reasons, many of which are listed at the link above. The most important reason is, of course, the patients, so that we can improve the safety, quality, and efficiency of the care we deliver. A single EHR will enable us to collaborate better with other physicians and engage patients by giving them greater access to their records and treatment team. In some ways I am most looking forward to the implementation of the patient portal myChart, since I think it will revolutionize access. As a patient of a Hopkins physician myself, I received an email today touting the benefits of the portal and encouraging me to sign up (yep, got that one covered).

Sounds great, right? Well, not always. The reality is that many physicians are not very fond of EHRs, for a lot of complex reasons. To put it bluntly, many truly can't stand using them for patient care and rarely find much good to say about them. And it's not that physicians are inherently technophobic - quite the opposite, as virtually every physician I know owns a smartphone and tablet - but as a profession we are deeply skeptical of anything that slows us down and changes our workflow. A major EHR implementation like this has a huge impact on productivity for weeks if not months. And it's not just about the change process. The reality is that most EHRs, including this one, leave a lot to be desired in terms of usability (how easy it is to navigate and get through your work) and interoperability (how well these systems share data with each other). Physicians have to spend more and more time entering data at the point of care through menus, drop-down lists, and checkboxes, and - as many point out - less and less time interacting with and looking at the patient in the exam room instead of the computer. And in spite of the multimillion dollar investment this requires for a large health care system like Johns Hopkins, these systems still don't talk well with other non-Epic systems (true for other vendors as well). 

Certainly, there is another side of the story. For the first time ever, Hopkins physicians, nurses, pharmacists, and other allied health professionals will be able to access clinical information about a patient from any one of our clinics and hospitals, something that was virtually impossible to do before this. The reduction in duplicate labs and imaging tests should be immediate, as so often in the past, labs were repeated simply because we didn't have access to prior results. Electronic prescribing will be uniformly implemented, and medication reconciliation will finally become part of our everyday clinic workflows. And while it won't happen right away, Epic's data mining capabilities will allow us to track many aspects of care with ease, analyze trends across populations of patients with similar clinical characteristics, and hopefully soon link these routine clinical data with personalized genomic markers being identified in our labs. 

I hope to write some future posts on this blog about different aspects of EHRs, like the Federal meaningful use incentive program and whether it is still "meaningful," why many doctors are disappointed with their existing systems (here's a teaser), why cost-savings and efficiencies EHRs were supposed to bring have, to date, not yet materialized, and why, in my opinion, greater penetration and implementation of EHRs is mandatory for the dysfunctional U.S. health care system to truly make our care patient-centered, something it obviously is not much of the time right now. Here's the take-home message for today: No industry in the U.S. in the 21st century is as dependent on paper-based record-keeping as health care historically has been. Even the most strident critic of EHRs would have to acknowledge that there is no justification for continuing to use antiquated, analog workflows based on the classic paper hospital or office chart, a place where data go to die, locked in a single vessel that cannot be viewed by more than one user at a time and not manipulated, analyzed, or transmitted (sorry, your 1980s fax machine doesn't count). U.S. health care has no choice but to adopt a fully digital infrastructure to achieve the goals of what some call the Triple Aim: higher quality and greater patient satisfaction, better population health, and lower cost. Clinicians must lead from within, by being fully engaged in system selection, design, and implementation, and not defer to the "IT team" or administrative managers. At a higher level, the physician voice must be heard by vendors and policymakers. I disagree with those that claim our input is useless. I acknowledge that it's difficult to move along a monolithic, billion dollar vendor when you're a single voice but it's not hopeless. Frontline clinicians are the only ones who really know what it takes to take care of patients. We should be the ones who are in the front leading change in health IT. Sniping from the sidelines, griping anonymously in comment sections on NY Times articles, or tagging tweets with #EHRbacklash may feel good momentarily but isn't going to help our patients or make our lives easier.

To be clear, I'm not talking about my colleagues at Hopkins who have generally been open to this implementation, even though they have been understandably apprehensive about the impact on clinic throughput and efficiency. I know they will rise to the occasion and do the right thing since that's our culture. But bashing health IT and meaningful use has become fashionable in the blogosphere and popular press these days, and it is becoming relentless. So here's my call to action: Physician colleagues, step up and engage. I understand your reservations, but I think our patients deserve better. They deserve our professionalism and resolve to make an impact on the current state, not skepticism and griping. They need us to take ownership of this transformation, so it happens with us and by us...not to us.

Health IT predictions for 2013

If you don't read the web site of iHealthBeat or follow their Twitter feed at @iHealthBeat you really should. It's a daily news digest from the California HealthCare Foundation covering the impact of technology on healthcare. Their report from yesterday 1/3/13 is a really interesting read - "11 Experts on Health IT Progress, Frustrations and Hopes for 2013." It starts with a brief digest of some of the important health IT stories from 2012, and then goes on to cover the responses from a panel of 11 diverse thought leaders on three questions:

1. What was the most significant health IT development over the past year?
2. What was the biggest disappointment or missed opportunity in the health IT space in 2012?
3. Looking forward to 2013, what are the biggest remaining barriers to widespread adoption and meaningful use of health IT? And, what can be done to help address those challenges?

The panel ranges from e-Patient Dave to John Sharp (research informaticist at the Cleveland Clinic) to Janet Marchibroda (chair of the Bipartisan Policy Center's Health IT Initiative).

A few themes emerge:

• The importance of patient empowerment and engagement, particularly as incorporated into Meaningful Use Stage 2 requirements
• The proliferation of and opportunities presented by mobile health technology
• Controversies over the delayed implementation of ICD-10
• Issues of privacy and security
• The uncertain impact of Accountable Care Organizations
• The ability of EHR's to facilitate potentially fraudulent upcoding for services (comments on both sides of this issue)

There seems little doubt that in 2013 technology will continue to be a key theme of healthcare delivery and policymaking at every level.

Electronic Health Records Infographic

The blogs that I read regularly are full of posts from physicians bemoaning the shortcomings of electronic health records, from poor usability to exorbitant costs to the impact on face-to-face (or at least eye-to-eye) contact with patients. As someone heavily involved in the design and implementation of the Epic system at Johns Hopkins, I know most of these comments represent an accurate depiction of a technology that is a long way from achieving its stated goals of increasing interoperability, enhancing patient safety, and ultimately improving patient outcomes. But this great infographic from the Office of the National Coordinator for Health Information Technology (ONC) reminds us that despite all of their faults, EHR's are able to connect patients and doctors much more effectively than paper records ever could, and there is no turning back if medicine wants to thrive in the 21st century.

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. 

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.