Twitter: An Essential Tool for the Physician Executive [Accepted for publication in The Physician Executive]

Every morning at 5:30 AM, I am at my computer scouring the Wall Street Journal, the New York Times, the Philadelphia Inquirer, and other news sources for articles about health care and wellness. These articles are then summarized in 140 characters with a link to the original article and tweeted. As of today there are 3070 followers of my informal aggregated health care news service, and I hear about it if I am late or slack off on the job. My twitter community depends on me, and I depend on them.

Twitter has transformed my professional life as an independent physician executive consultant-keynoter who advises health systems and medical groups. Twitter is the main tool I use to monitor the latest developments in the world of health care delivery, payment reform, and physician integration.

I follow about 1,000 health care professionals on twitter, and I often learn about developments in real-time long before they hit the newspapers and journal articles. A few months ago, I was preparing a keynote for a Governance Institute Conference on Social Media for Hospitals and Doctors. One of the people I follow on twitter mentioned a Deloitee Touche white paper on just this subject. I looked it up and included some of their findings and recommendations in my talk (http://ow.ly/29QZy). Without my twitter community, I would probably have never seen this valuable resource.

My Twitter Community

My twitter community has become an extremely powerful resource for my professional development. When I mentioned in a tweet that I was going to be in Boston speaking at a World Health Care Congress last year, three of my followers suggested we meet in person to discuss health care transformation. Instead of having room service alone in my hotel room, I had a delightful lunch with @janicemccalum and an informative dinner with @healthblawg. In between conference sessions I also networked with @susancarr. Janice McCallum is a digital publishing expert and product strategist who specializes in data analytics. Months after our lunch, Janice invited me to attend 2010 Data Content: The Infocommerce Conference in my hometown of Philadelphia where I learned how construction, chemical, and legal ratings companies are managing data in the digital age. Healthblawg in real life is David Harlow, a well known health care attorney who has become my go to guy with legal questions about reform. Susan Carr is the bio editor of Patient Safety and Quality Healthcare Magazine, and I now have a new resource in this area.

In December I hosted a holiday potluck in my home so that Philadelphia area members of my twitter community could meet in person. It was really an enjoyable event to finally put a face to a twitter buddy who I had been learning from for years. Attendees included a health care economist, a customer relationship marketing director from a pharma company, a CEO of a healthcare innovation company, a nurse entrepreneur, a children’s hospital executive, a University of Pennsylvania senior, a biotech start-up executive, and a mergers and acquisitions managing partner. Business cards were exchanged and who knows what will develop, but I now have met several of my twitter community and feel even closer to them.

Getting Speaking and Consulting Gigs

There is no doubt in my mind that my online presence has led to keynote and consulting opportunities. When Swedish Hospital in Seattle was planning its 100^th Birthday Celebration Conference, Melissa Tizon, communications director at the hospital, contacted me to speak on payment reform and social media; she told me she followed my tweets and knew I was the right person for these subjects. While at that conference I got to meet the CEOs of GE and Epic who also spoke during the program.

When Pamela Lewis Dolan of American Medical News wrote about the new Mayo Clinic Center for Social Media she quoted me because I was a well-known active physician tweeter. (http://www.ama-assn.org/amednews/2010/08/09/bil20809.htm) Several keynote clients of mine have stated they first learned of me from this news article.

My Research Department Works for Free and Is Scattered Across USA

I remember distinctly marveling at how Procter & Gamble taps into freelance inventors all over the world to come up with more than half of their new consumers products. Little did I know when I read about this example of mass collaboration in Wikinomics: How Mass Collaboration Changes Everything (http://ow.ly/3kvWP), I would soon be able to apply this same principle in outsourcing for free my research needs as a consultant to hospital systems and medical groups.

Last year I was preparing to facilitate a medical staff board retreat on Computer Physician Order Entry (CPOE) and Information Technology for a hospital in the West. As preparation for the weekend session I wanted to send a white paper to all the participants, but I had trouble locating the perfect document. I typed a cry for help to my 1000 twitter followers: “In need of white paper on getting doctors to accept CPOE.” Within a day, @ahier, a health care information technology expert in Oregon who I have never met face to face, emailed several overviews that worked perfectly.

This month I woke up early to check out twitter before heading off to help with a leadership training academy for a health care organization that is seeking to transition from a manufacturing company to a solutions shop. I noticed that one of the healthcare professionals I follow (@lizasisler) posted a tweet with a link to a blog post about the potential uses of Microsoft’s Kinect technology for health care. After reading the link, I used the information in my presentation to the leadership academy 5 hours later the same day. How is that for just in time research from an unpaid colleague who lives in Cleveland? (http://ow.ly/3kwOm)

Twitter & Conferences

As I write this on December 6, 2010 I noticed in my twitter feed that I can follow today’s 2010 Mayo Clinic Health Policy Center Symposium, Achieving the Vision: Advancing High-Value Health care by following the hash tag #mayohpc. Most of the conferences I attend now encourage participants to tweet during presentations so that a permanent record of the conference exists on twitter. Tweet streams allow me to keep up on conferences that are too far away or too expensive for me to attend, and I can read them when I have time (not necessarily in real-time).

Martin Ebner (http://www.slideshare.net/mebner/how-people-are-using-twitter-at-conferences) has studied the use of twitter at conferences before, during and after a conference. I certainly learned the utility of twitter before the 2010 ICSI Annual Colloquium. When I used twitter in the weeks and months before the meeting, I was able to attract participants from all over the country to sign up, identify speakers who were experts on innovation in health care, and discover hot topics that were being discussed on twitter.

During the conference, twitter can encourage networking between participants. Ebner found that attendees used twitter to share resources, communicate with others, participate in parallel discussions, jot down notes, establish an online presence, and pose organizational questions. Ebner quotes two participants, one with a positive view of twitter at conferences and one with a negative view:

“In the background we discussed things more deeply than the guys on the stage.”

“Twitter can be distracting – you pay less attention.”

After the conference, the tweet stream from a conference can also be used as a permanent record of the discussion, and it can extend the conversation for days and months after the actual event is over and everyone has gone home.

Twitter has become an extremely powerful professional tool for me as an independent physician consultant/keynoter.

Kent Bottles, MD lives in Philadelphia where he is an independent health care consultant, keynoter, and writer. He can be reached at kentbottles@gmail.com or 610 639 4956

Community Hub of Wellness & Health (CHWH) In Accountable Care Organizations (ACOs)

Hospitals are going to change. What worked in the past will not work in the future. The passage of the federal health care reform law and the inevitable transition from fee for service to global payments is changing the rules of the hospital game. Hospitals will have to make do with less financial support from both government and private payers and at the same time deliver higher quality health care with measurably better outcomes. Hospitals will take care of fewer and fewer patients as care continues to migrate to the outpatient setting, the home, and wherever citizens live carrying their smart phones. The development of Accountable Care Organizations (ACOs) to receive and distribute these global payments will affect hospitals whether they decide to take a leadership role or a wait and see attitude. There will be winners and losers among hospitals; there will be fewer hospitals in America in ten years than there are today in 2011.

Hospitals that survive this transformation of the health care delivery and payment system will become the community hub of wellness and health (CHWH) that citizens turn to in a time of rapid and chaotic change. Becoming a CHWH will require hospitals to expand their services and expertise well beyond the traditional role of an acute care facility. It will also require hospitals to embrace social media and disruptive digital tools that are now available to help care for a defined population living in the community. Hospitals will have to forge a new culture or their ACOs will fail, no matter how sophisticated and expensive their legal structures and physician integration plans become.

Hospital leadership seems ill prepared for this transformation in mission. Robert Naldi, the CFO of Maimonides Hospital in Borough Park, Brooklyn, is not alone when he says, “I don’t spend a lot of time thinking about global issues. When I hear Medicare is being cut six billion dollars over the next ten years, Medicaid cut four billion dollars the next, that ten billion dollars doesn’t change what I do on a Thursday morning…. I don’t spend any energy forecasting the next three or four years, because I don’t think anyone can do that. We’re lucky if we forecast the next six months, things change so rapidly. I just don’t waste time on it.” (http://ow.ly/3Dlxp)

At a time when the most sweeping federal health care legislation since the 1965 Medicare law has been passed, someone in hospital leadership or the hospital board should be spending “energy forecasting the next three or four years.”

In the present payment system, hospitals are profitable when they are filled to capacity doing surgery, generating laboratory results, and producing imaging studies. Hospital administration and specialists have the most prestige and power, and the culture of the system reflects this reality. In a global payment system, the ACO caring for a defined population will do well when patients are successfully treated at home and managed so that hospitalizations are avoided. Primary care physicians will be instrumental in this new approach to care that emphasizes prevention and only essential testing, imaging, and referrals to specialists; the old specialist centered culture will be challenged by this new reality.

Some hospital leaders are taking a wait and see attitude because of the federal court challenges to the individual insurance mandate and the November 2010 election results of a Republican dominated House of Representatives that wants to repeal the federal health care reform law. National Business Group on Health President Helen Darling, a former Republican Senate staffer, says about those who call for repeal: “If they really understood it, they wouldn’t. I don’t think we’ll get a better solution in the U.S. in our lifetime. If it gets repealed or gutted, we’ll have to start over and we’ll be worse off.” (http://ow.ly/3D7Ih)

The other approach is to be proactive and plan how the hospital will take care of a defined population in an ACO. According to Mary Ella Payne, vice president of System Legislative Leadership for Ascension Health, their physicians and nurse leaders met in June 2010 and agreed that the status quo, fee-for-service system is unsustainable. Even in the absence of a health reform bill pushing the idea, ACOs make sense to Ascension Health. "Regardless of what happens with the big picture, we feel like we need to move ahead with reforming our delivery system. We felt we needed to do this because it's the right way to manage care for our patients." (http://bit.ly/glgGzA)

For those taking the proactive approach, developing the hospital as the center of a trusted CHWH will be imperative. Hospitals have not been immune to the pattern of decline of trust that has affected many modern American institutions such as the Catholic Church, Wall Street, Congress, and large corporations. Forty two percent of the public report experiencing a medical error involving themselves, a relative, or a friend; 68 percent believe medical quality is a serious problem. There is also a relationship between trust and getting patients to adhere to medical advice such as stopping smoking or losing weight that will become more important under an ACO arrangement. Twenty four percent of patients in the bottom 5 percent of the trust scale successfully changed such behaviors, while 33% in the top 5 percent of the trust scale were able to do so. (http://ow.ly/3Dm6n)

Trust will be needed in order to establish a successful CHWH, and a successful hub will also increase trust in the hospital. David A. Shore lists why trust is so important for a hospital: it allows the organization to be an employer of choice; it allows easier access to capital; it affects regulators; it allows people to work together effectively; it reduces transaction costs; it allows rapid cycle improvement work to be successful at elevating quality; and it allows the hospital to take on challenging projects that are new to the hospital’s mission. (http://ow.ly/3DqgA)

The CHWH would support the Healthy People 2020 program, which provides science based 10-year national objectives for improving the health of Americans. (http://www.healthypeople.gov/2020/about/default.aspx) Hospitals that expand their mission to include the new objectives in Healthy People 2020 such as social determinants of health and health related quality of life and well being will become more trusted in their community and more successful in functioning as an ACO. I have not identified hospitals that are mature in developing a CHWH, but there are examples of programs that fit nicely into this concept.

The Kaiser program that brings farmer’s markets into 30 hospital facilities in four states is an example of a CHWH program. (http://ow.ly/3Dodm) Dr. Preston Maring introduced the Friday Fresh Farmer’s Market at Kaiser Permanente Oakland Medical Center in May 2003; since then it has grown to include a system that supplies locally grown fruits and vegetables for 23 Kaiser hospital kitchens as well as the weekly farmer’s markets. Maring also helped establish a seasonal market at GM-Toyota's New United Motor Manufacturing Inc. plant in Fremont, where 5,000 people work. In Los Angeles, Kaiser worked with Sustainable Economic Enterprises of Los Angeles, to open the Watts Healthy Farmers' Market. That market also provides health screenings, nutrition education and other activities. Dr. Maring says, “Markets change the community. They provide good food, fun, a meeting place.” (http://ow.ly/3D) Such programs also create new trusting relationships between the hospital, farmers, food distributors, and other employers that can only increase the standing of the hospital in the community.

In the United Kingdom, the new Mansfield Community Hospital in Nottinghamshire is being designed so that there is easy access for both pedestrians and vehicles. The architects envision a hospital that is seamlessly integrated into the community and where citizens will congregate in the café located in the main entrance. (http://ow.ly/3CH7l)

The CHWH could also become the trusted repository for advice about how to utilize smart phone digital technology. Susannah Fox of the Pew believes digital devices and mobile wireless service will transform healthcare by making it portable, personalized, and participatory. She describes a Stanford Project Health Design study that helped chronically ill teens transition to adulthood by monitoring the teens’ moods by their iPod songs and the words they used in text messages. Because these patients were digital natives they agreed to a level of surveillance that would probably disturb most traditional and older patients.

The Community Hub might have advisors who could explain the smart phone applications that harness the device’s computing power, cameras, audio, video, motion sensors, and GPS. These functions are being used in new ways to manage health and wellness. For example, there are fitness and weight control apps such as Tap & Track, iTreadmill, and Calorie Counter by Fatsecret that can keep track of exercise program progress and even replace personal trainers and pedometers. Diabetics are finding apps such as Glucose Buddy and Handylogs Sugar useful, and hypertensives are buying apps such as HeartWise and My Blood Pressure and Heart Rate. There are even applications for sleep hygiene and stress reduction. Many in the community will find these technologies difficult to understand and use without a trusted community resource to guide them.

These are only examples of services that a CHWH might offer, and obviously different communities will require different services to support the health and well being of the citizens who live there. Julie Salamon’s book Hospital: Man, Woman, Birth, Death, Infinity, Plus Red Tape, Bad Behavior, Money, God, and Diversity on Steroids provides a fascinating case history of how Maimonides Hospital in Borough Park, Brooklyn tries to engage a community that is changing from exclusively Jewish to include Chinese and Pakistanis. The story of how Douglas Jablon, vice president, patient relations/special assistant to the president, connects with these diverse communities underscores the difficulty and necessity of using personal contacts and street smarts to deliver social services in a way acceptable to Muslims, Jews, and Chinese. His thirty patient representatives came from Haiti, Ukraine, Greece, Germany, Pakistan, Nigeria, and Borough Park. “Some were Ph.D.’s; others had only high-school diplomas. They were notary publics, so they could act as official witnesses to Do Not Resuscitate orders and do favors for doctors who needed something notarized.” The Maimonides ER dealings with the Hatzolah (emergency medical service run by Orthodox Jews) and Miriam Lubling (founder of Rivkah Laufer Guardians of the Sick, a major source of patient referrals) illustrate just how complicated and difficult engaging a community can be. As the COO at Maimonides observed, “You have to deal with things here you don’t have to deal with in Manhattan.” (http://ow.ly/3Dlxp)

Hospitals are going to have to decrease per-capita cost of the care they deliver and increase the quality. The shift from fee for service to global payments directed to an ACO will require a major shift in hospital culture and mission. Those hospitals that develop CHWH to provide new services in new ways will better engage their community and become so valuable that they will survive. Those hospitals that fail to change will disappear.

What Would A Truly Patient-Centered Accountable Care Organization (ACO) Look Like?

Health care leaders are busy talking to attorneys and consultants about how to set up Accountable Care Organizations (ACOs). A recent Advisory Board survey found that 73 per cent of hospital finance executives said that creating such an organization was a top priority for their health system.

Last year my most popular keynote topic was patient-centered medical home creation; this year everyone wants a presentation on ACOs.

However not everyone has jumped on the ACO bandwagon. Bruce Bagley, MD of the American Academy of Family Practice was recently quoted as saying, “There are probably no experts about ACOs. It’s a developing concept.” And Jeff Goldsmith, PhD, of the University of Virginia stated at the same conference: “I think this is a stupid idea. Managed care without the risk – that’s like gin and tonic without the gin. How do you end up making choices if you’re not forced to make them?” (http://bit.ly/glgGzA)

I started thinking about what an ACO would look like if it was truly patient-centered. What if we designed an ACO that gave patients what they say they really want?

Don Berwick wrote an article in Health Affairs in 2009 that examined what patient-centered should mean, and since he became the head of Medicare in 2010 it might make sense to start there. After all, Medicare is pushing the ACO concept by creating pilot projects and encouraging the shift from fee for service payments to global payments for medical care reimbursement.

In the Health Affairs article, Berwick defined patient centered care as “They give me exactly the help I need and want exactly when and how I need and want it.” Berwick said he was ready to move beyond words like partnership and have providers become guests in the lives of their patients.

Berwick went on to imagine that really embracing patient centered care would mean having no restrictions on hospital visiting hours, inpatients choosing what food and clothes they wanted, patients participating in rounds and the design of medical services, patients really owning their medical records, and patients and doctors universally using shared decision making aids so that patients could make wise choices knowing the inevitable trade-offs involved in picking a treatment.

Such an ACO would invest heavily in patient education and self-management programs. And these presentations would go well beyond the currently offered traditional wellness curriculum.

For example, a truly patient-centered ACO would offer technology support so their patients could harness their smart phones’ computing power, audio, video, motion sensors, and GPS modules to explore new ways to self-manage their health and wellness. There are smart phone applications for fitness and weight control, diabetes management, sleep hygiene, stress reduction, and hearing and vision assistance. An ACO that partnered with their patients to fully utilize such technology could keep their clients healthier and out of the hospital. Such a strategy makes a lot of sense if your organization is accepting global payments where hospitalizations are not incentivized.

I could even imagine a truly 21^st century ACO expanding their primary care team to include physicians, advanced nurse practitioners, physician assistants, and even robots and avatars. Dr. Joseph Kvedar of Harvard’s Center for Connected Health believes that we will need to embrace emotional automation and use robots and avatars to meet the manpower needs of taking care of all the retiring Baby Boomers. In a YouTube video he states that one Boston hospital has already found that hospital patients prefer a robot for discharge planning to a real life person. The robot has all the time in the world and does not make the patient feel stupid when they ask the same question over and over again.

At first, I had a hard time getting my head around this emotional automation concept, but reading MIT’s Sherry Turkle’s book Evocative Objects: Things We Think With has convinced me that humans have already formed trusting relationships with technology. “We think with the objects we love, and we love the objects we think with.” How many of us talk about love when we discuss our iPhones or iPads that have really become extensions of our brains? Admit it, do you sleep with your smart phone?

The Health System that designs an ACO that is truly patient-centered will be highly successful. In addition to consulting attorneys and payment reform consultants, I would suggest that health systems think about how the new disruptive technologies (smart phones, tablet computers, avatars and robots, video games, haptics, and artificial intelligence) could be used to better manage a geographically defined population of patients.

Twenty Books I Read in 2010 That Really Influenced My Thinking

1. Sarah Bakewell, How to Live Or A Life of Montaigne. This book is the best introduction in English to Michel Eyquem de Montaigne, the man who retired in 1570 to his Bordeaux estate to make wine and invent the modern essay. I had read the essays in college, but Bakewell inspired me to re-read them, which I am doing. Montaigne who lived during a time of almost constant civil war between the Protestants and Catholics is wise and has advice like question everything that works today.

2. Kathryn Schulz, Being Wrong: Adventures in the Margin of Error. Schulz really made me re-think how I view being wrong and failure. This book is hilarious, well written, but ultimately quite serious. To read a blog inspired by this book go to

http://ow.ly/3w5VC

3. Siddhartha Mukherjee, The Emperor of All Maladies: A Biography of Cancer. Both the biography of cancer and the training of an oncologist, this book is graceful, elegant, and well written. I am in awe.

4. David Blumenthal and James A. Morone, The Heart of Power: Health and Politics in the Oval Office. From FDR to George W. Bush, health care’s role in the office of the president and in American politics is dissected and analyzed. Reading this great book helps one keep the day-to-day ups and downs of health care reform in perspective. Partisan fighting and unfair attacks are nothing new when it comes to this divisive issue. Yes David Blumenthal is that guy who runs ONC under HHS.

5. John E. Wennberg, Tracking Medicine: A Researcher’s Quest to Understand Health Care. The founder of the Dartmouth Atlas and approach makes a sensible and compelling argument for shared decision-making as the only way to decrease per-capita cost and increase quality. Using University of California data, he also refutes the UCLA argument. (http://ow.ly/3w6aL)

6. Jeffrey J. Kripal, Esalen: America and the Religion of No Religion. The J. Newton Rayzor Professor and chair of the Department of Religious Studies at Rice University not only tells the Esalen tale complete with characters like Hunter Thompson, Joan Baez, Fritz Perls and all the rest, but he more importantly cogently analyzes the influence of Eastern religions on America.

7. Robert Kegan and Lisa Laskow Lahey, Immunity to Change: How to Overcome It and Unlock the Potential in Yourself and Your Organization. The best book on change management that actually works. Must read in my humble opinion.

8. Sherry Turkle, Simulation and Its Discontents. Sherry Turkle is the university professor I wish I were. She is the one pundit on technology I really trust.

9. Dennis McCullough, MD, My Mother, Your Mother: Embracing Slow Medicine, the Compassionate Approach to Caring For Your Aging Loved Ones. McCullough is that wise primary care provider you wish you had as your doctor and as the doctor to your parents who live on the other side of the country. (http://ow.ly/3w6aL)

10. Carol S. Dweck, PhD. Mindset: The New Psychology of Success. Stanford professor whose research has changed my mind about how important mindsets are to the individual, the organization, and the nation. (http://ow.ly/3w6tp)

11. Charles Seife, Proofiness: The Dark Arts of Mathematical Deception. The title says it all.

12. Eric Abrahamson and David H. Freedman, A Perfect Mess: The Hidden Benefits of Disorder – How Crammed Closets, Cluttered Offices, and On-the-Fly Planning Make the World a Better Place. Anyone who has seen my office or desk or talked to Elizabeth Melby knows why I love this book. And let’s face it, it is true.

13. Ian F. McNeely with Lisa Wolverton, Reinventing Knowledge: From Alexandria to the Internet. One of those brilliant big picture books that traces the institutions (library, monastery, university, republic of letters, disciplines, and the laboratory) that have nurtured, shaped, and changed human knowledge.

14. Faye Flam, The Score: How the Quest for Sex Has Shaped the Modern Man. Title says it all about this hilarious and true science book.

15. Daniel S. Greenberg, Tech Transfer: Science, Money, Love, and the Ivory Tower. It’s a novel, but after having been a medical school professor, I can tell you it rings true. A professor creates a rat that never sleeps, has a bowel movement, or urinates, and the US Army is very interested.

16. Tom Chatfield, Fun Inc.: Why Gaming Will Dominate the Twenty-First Century. The serious look at the future of gaming that inspired the blog post (http://ow.ly/3w6Ke)

17. Melvin L. Rogers, The Undiscovered Dewey: Religion, Morality, and the Ethos of Democracy. An important interpretation of America’s most important and influential philosopher, the main man for pragmatism.

18. H. Gilbert Welch, MD, MPH, Should I Be Tested for Cancer? May Not and Here’s Why. The title tells you why this is an important book.

19. David H. Freedman, Wrong: Why Experts Keep Failing Us. (http://ow.ly/3w6S6)

20. Steve Hagen, How the World Can Be the Way It Is: An Inquiry for the Millennium into Science, Philosophy, and Perception. A science writer turned Buddhist monk really knows how to write about science and religion.

The Difficult Science, Part II

“Despite their great explanatory powers these laws [such as gravity] do not describe reality. Instead, fundamental laws describe highly idealized objects in models.” Nancy Cartwright, “Do the Laws of Physics State the Facts?”

In Part I the limitations of science in helping us make wise choices and decisions about our health were examined. (http://j.mp/dUg6mo) Because of an inherent difficulty in establishing causation, absolute certainty is unattainable even in science. Medical knowledge follows Karl Popper’s theory of science because the right answer, whether about what causes ulcers or if you should take hormone replacement therapy, keeps changing with the publication of new studies. And most depressingly of all, a respected expert on evidence-based medicine concludes, “The majority of published studies are likely to be wrong.” (http://ow.ly/3tKdM)

Part I ended with some suggestions that seemed to imply that savvy patients should enroll in a graduate level statistics class and understand the subtleties of observational studies, met analysis, and randomized controlled clinical trials. Being an informed health care consumer is evidently difficult indeed.

Part II explores how we all have to change if we are to live wisely in a time of rapid transformation of the American healthcare system that everyone agrees needs to decrease per-capita cost and increase quality.

PATIENTS

When I talk to physicians about pay for performance programs, I am always asked why should doctors be responsible for patient behavior that they cannot control. Even if we were able to have health care access for all and eliminate every error in medicine, we would only account for 10% of whether an individual stays healthy. Environment and genetics account for about 35%, but the remaining 55% of whether one stays well depends on behavior (exercise, smoking, diet) and social support systems (families, communities, places of worship) (http://ow.ly/3uVgl)

Patients do need to change; more care is not always better care; more expensive care can be unproven and dangerous to your health; understanding the trade-offs involved in all medical decisions is imperative; becoming an empowered or e-Patient makes sense to me because nobody cares as much about your health as you do; having more financial skin in the game makes sense to me because now those that pay (government and employers) are not represented when doctors and patients make decisions.

But, I think it is ludicrous and unreasonable to think that patients have to make all these changes on their own. They cannot possibly do it alone. And I think it is important to remember patients come in all kinds and shapes. Not everybody wants to be an empowered patient. One bioethicist in 1990 said, “We must render a patient’s responsibility to the physician unacceptable, and we must insist that patients take primary responsibility for making decisions related to their health care” (http://ow.ly/3uRR8). This bioethicist doesn’t understand patients; he doesn’t understand illness, and he certainly doesn’t understand the health care delivery system.

I have written elsewhere at length about the ideal doctor patient relationship (http://ow.ly/3uIop), but let me insert one paragraph from that blog post here:

“Schneider in The Practice of Autonomy finds that some patients may want to reasonably give up their right to make their own medical decisions because they feel less competent than their physicians, because they are too exhausted, depressed, irritable, and confused by their illness to think straight, and because they want to be manipulated into a course of action they desire but still resist. He describes patients’ desires as ‘complex, ambiguous, and ambivalent.’ A patient quoted in this important book says, ‘I needed the doctors to take control so I could use all my energy for recovering’” (http://ow.ly/3uRR8).

My friend and colleague e-Patient Dave who survived Stage IV kidney cancer weighed in on January 9, 2009 in his blog where he wrote, “As someone whose butt was saved by excellent medical care, I find it unimaginable to consider doctors ‘incapable of determining what will benefit’ me. What, like I was going to think up high-dosage Interleukin-2 on my own?”

Patients do need to become wiser and savvier consumers of health care, but it would help if others did a better job of supporting them in this endeavor.

THE MEDIA

Patients would be better served if the media did a superb job of putting new medical “breakthroughs” in proper context. Former US Senator David Durenberger has recently emphasized the importance of a responsible news media in an era of health care transformation:

“At no time in our history have we been more dependent on good reporting about things beyond our scope or our control than we are today. The ability of unreliable or biased information and its reporting to distort public opinion and destroy public confidence in policy-makers has made it well nigh impossible for elected officials to deliver the hard news we need to hear. Or the good news that is possible from appropriate behavior change.” (http://ow.ly/3uJ65)

The Reader’s Digest played an important role in informing Americans of the link between smoking and lung cancer in 1952 and in explaining why switching to filter cigarettes did not protect against cancer in 1957. (http://ow.ly/3tKdM)

However, the media today often falls woefully short of doing the superb job that we as patients and citizens need. The editors of The New England Journal of Medicine in 1994 wrote, “The problem is not in the research but in the way it is interpreted for the public…. An association between two events is not the same as a cause and effect.” They emphasized the importance of reporters articulating the limitations of any one single scientific study. (http://ow.ly/3uJkj)

Health journalist Gary Schwitzer has established HealthNewsReview.org where a panel of more than a dozen experts grade health news stories for their accuracy, balance, and completeness. Using a zero to five star rating system, this website is an important resource for anyone trying to become a more informed citizen or consumer. This project has been honored with the Mirror Award and the Knight-Batten Award for Innovation in Journalism. The problem is that many of the stories in our newspapers and on our television newscasts fall far short of a 5-star rating.

The Science Literacy Project is another resource trying to improve the level of reporting, and they point out that journalists need to learn “enough about how studies are designed and conducted to be able to tell your listeners how solid the research really is…The gold standard is a randomized, double-blind, controlled trial. Other kinds of studies…can provide intriguing hints but not firm evidence.” (http://ow.ly/3tKdM)

Scott Maier, a veteran news reporter and university journalism professor, explains that the entire reporting culture works against the kind of health reporting that is needed, “We want to look at the positive aspects of medical breakthroughs, we want stories that pay off with some dividend. If you want the story to have its fullest impact, you’re more likely to exaggerate what the expert says than you are to question it.” (http://ow.ly/3tKdM)

We need a health care media that is skeptical and questions medical studies so that the public understands the limitations of any one “breakthrough.”

RESEARCHERS

With due respect to the editors of The New England Journal of Medicine, there are problems with research culture, and investigators need to change as much as journalists and patients.

A study documenting 788 retracted papers from 2000 to 2010 in the Journal of Medical Ethics concludes, “American scientists are significantly more prone to engage in data fabrication or falsification than scientists from other countries.” (http://ow.ly/3uKzt) American scientists were lead authors on 169 papers retracted for serious errors and 84 retracted for outright fraud. It is important to recognize that retractions for errors can be part of the normal process of scientific discovery and confirmation by replication, and retractions for any reason are rare. However, cases of outright fraud like Dr. Scott Reuben, the Massachusetts anesthesiologist who had 21 papers retracted, undermine the public’s confidence in medicine because his papers changed the way millions of patients were treated for postoperative pain (http://ow.ly/3uKzt). Ivan Oransky, MD and Adam Marcus provide a valuable resource for us all with their Retraction Watch blog that keeps track of this phenomenon (http://ow.ly/3uL3b).

The publish or perish culture found at American universities may be compromising research objectivity and integrity, according to Danielle Fanelli, author of an analysis of 1,300 academic papers published in the United States (http://ow.ly/3uLev). ProPublica’s discovery that more than a dozen Stanford medical school faculty were paid speakers for pharmaceutical companies also lend support to the need for change in the research culture. Stanford had been applauded for its tough conflict of interest policy that prohibited such presentations, but enforcement and accountability appear to be lacking. The University of Pennsylvania, the University of Pittsburgh, and the University of Colorado Denver are also looking into similar situations (http://ow.ly/3uLs5)

David H. Freedman’s book Wrong: Why Experts Keep Failing Us – And How to Know When Not to Trust Them does an admirable job of explaining how difficult it is to get research right and how the culture does not always help maintain objectivity and integrity. “The beliefs of researchers are shaped by ‘all of the vanities, vested interests, hunches, experiences, politics, careerism, grantsmanship tactics, competing cadres of collaborators, imperfections, and backgrounds of the scientists investigating problems at any time.’” Since research is a human activity, bias is rampant and unavoidable. Freedman details how researchers measure what doesn’t matter, mismeasure, toss out inconvenient data, keep reanalyzing data using different statistical models until they discover an association, don’t publish negative findings, and fail as referees in peer review to find obvious flaws in research papers. Tomaso Poggio, a tenured computer scientist as MIT states, “There’s much more competition for tenure in academia now than there was twenty years ago. It’s almost a little sick.” UCLA cancer researcher Jeffrey H. Miller tells Freedman, “The way science works is, when you end up backing a theory, you can’t afford to be wrong or your grant will suffer.” (http://ow.ly/3tKdM)

Jonah Lehrer also points out how hard it is for researchers to find the truth. “It’s hard because reality is complicated, shaped by a surreal excess of variables. But it’s also hard because scientists aren’t robots: the act of observation is simultaneously an act of interpretation.” (http://ow.ly/3uUor) When Lehrer wrote an article on scientific replication and the decline effect, he was criticized by some in the scientific community for giving aid and comfort to those who deny climate change or evolution. Lehrer described the frustration of biologist Michael Jennions who looked at hundreds of papers and 44 meta-analyses and discovered a consistent decline effect over time. “This is a very sensitive issue for scientists. You know, we’re supposed to be dealing with hard facts, the stuff that’s supposed to stand the test of time. But when you see these trends you become a little more skeptical of things.” (http://ow.ly/3uUor) Lehrer emphasizes that the decline effect makes it imperative that we consider each single scientific study in context. (http://ow.ly/3uUor)

While the randomized, double blind clinical trial is the evidence-based medicine gold standard of today, they are so expensive and time-consuming that enough of them will never be finished to serve the needs of Medicare or patients with various conditions. Computer simulation may provide an alternative to the clinical trial that is better than the status quo. Dr. David Eddy compared the computer simulation approach to the clinical trials approach by trying to predict the outcomes of the seven-year Collaborative Atorvastatin Diabetes Study (Cards). Of the four principal findings of the Cards trial, Eddy’s Archimedes computer model predicted two correctly, a third within the margin of error, and a fourth just below the margin of error. Eddy estimates that the computer simulation took a few months and cost 200^th the cost of the Cards trial (http://ow.ly/3uTb6).

Having served on the tenure review committee at the University of Iowa Carver College of Medicine and having also been on the medical school faculty at UCSF, Allegheny University of the Health Sciences, and Michigan State College of Human Medicine, I can personally attest that the culture of medical research needs to be improved. Researchers need to follow the rules, be open to new approaches, and be transparent about the limits of science.

CLINICIANS

Physicians need to adjust to tremendous change in the practice of medicine due to the Internet, the wide-spread adoption of electronic medical records, e-Patients (http://e-patients.net/), the emergence of patient social media sites (http://ow.ly/3uQZU), the increase of patient-directed research (http://www.curetogether.com/), the movement to allow nurses and physician assistants to practice to the top of their licenses (http://ow.ly/3uQyp), the increased federal funding for comparative effectiveness research (http://ow.ly/3uR6l), the demand for more accountability (http://ow.ly/3uRc4), and even the use of avatars and video games for health and wellness (http://ow.ly/3urrA).

Physician discontent appears to be a growing problem both for patients and for providers (http://www.ncbi.nlm.nih.gov/pubmed/12928472), and the above-described changes are playing a role in increasing this lack of professional satisfaction.

I propose Dr. Lewis Blowers, a general surgeon, and Dr. Robert Parker, a pediatrician, as role models. When John E. Wennberg shared the variations in local tonsillectomy rates in Vermont with the State Medical Society, Dr. Blowers and Parker instituted a second opinion process, which lowered the chance of a child in Morrisville undergoing a tonsillectomy from 60% to less than 10% (http://ow.ly/3uRM4). They did not challenge the data; they did not react defensively; they did not try to defend a lucrative way of treating sore throats; they did what was in the best interest of their patients, even though it required them to change their style of practice.

In order to be professionally fulfilled and undiscouraged, physicians need to develop the humility, courage, and existential strength required to view all of these disruptive changes as potential ways to better take care of their patients. Accepting and admitting that medical science does not have all the answers is part of developing humility.

This need for professional humility is nothing new; when Dr. Robert Lovett of Children’s Hospital in Boston told Franklin Delano Roosevelt there was no medical treatment for his polio induced poor muscle control, Roosevelt developed his own exercise program. Roosevelt even bought and managed a spa in Warm Springs, Georgia where he and others could exercise in a warm swimming pool. When the American Orthopedic Association refused to let Roosevelt speak in 1926, he crashed the meeting and negotiated an agreement to evaluate his patient-developed Warm Springs program. (http://ow.ly/3uT1K) Talk about an empowered patient.

The movie The King’s Speech movingly depicts the success of an uncredentialed, failed Australian actor in treating the King of England’s speech problem, and it also documents the failure of the knighted royal medical doctors’ approach (http://ow.ly/3uT49).

I would hope that physicians would become the leading advocates of shared decision making. This is the one approach that offers us the ability to both decrease per-capita cost and increase quality. “A recent Cochrane review of randomized clinical trials comparing shared decision making supported by decision aids to obtaining informal consent through usual care showed an average 24% decline in demand for a wide range of elective surgeries and tests.” (http://ow.ly/3uRM4). One estimate suggests that such an approach could save Medicare $4 billion a year. (http://ow.ly/3uRM4). The Foundation for Informed Decision Making is a valuable resource for such decision aids that need to be much more widely adopted in the United States. (http://ow.ly/3uSAp)

CONCLUSION

Patients, the media, researchers, and clinicians all have to change if we are to live wisely in a time of enormous change and transformation for the American health care system. We must be willing to accept the limitations of science and be open to shared decision making that recognizes that there are trade-offs in any decision made in this uncertain and unpredictable place we call reality.

Part III will describe how medical schools, payers, and employers need to change (coming soon)