Topol and Agus on the Future of Medicine

Speaker after speaker at the January 26, 2012 Care Innovations Summit in Washington, DC concluded that increasing the quality and decreasing the per-capita cost of health care is the dominant political, social, and economic issue of out time. More than one expert called for a “jailbreak.” Before January 26, “jailbreak” for me meant either an obscure English reality television show or an expression applied to overriding the software limitations deliberately placed on computer systems for security or administrative reasons. The speakers in DC seemed to be calling for a jailbreak out of the prison of the status quo of the American health care delivery system and into an era of digital medicine and understanding the ill patient as a complex emergent system that does not need to be fully understood to be cared for.

Two new books make the case that American medicine is at an inflection point and about to undergo “its biggest shakeup in history.” Eric Topol, MD in The Creative Destruction of Medicine: How the Digital Revolution Will Create Better Health Care (New York: Basic Books, 2012) is no fan of the traditional approach which he labels as “conservative to the point of being properly characterized as sclerotic, even ossified.” David B. Agus, MD in The End of Illness (New York: Free Press, 2011) applies systems biology to his field of oncology and concludes: “Cancer is not something the body has or gets; it’s something the body does.”

Medicine is notorious for being slow to catch up to the rest of the world. The following statement by H. Thomas Johnson, former President of the Academy of Accounting Historians, indicates that medicine is even more recalcitrant to change than accounting:

“Quantum physicists and evolutionary biologists now believe that it is best to describe reality as a web of interconnected relationships that give rise to an ever-changing and evolving universe of objects that we perceive only partially with our senses. In that systemic view of the world nothing is merely the sum of the parts; parts have meaning only in reference to a greater whole in which everything is related to everything else. The Cartesian/Newtonian worldview has influenced thought far beyond the physical sciences, and accounting is no exception. Double entry bookkeeping and the systems of income and wealth measurement that evolved from it since the 16^th century are eminently Cartesian and Newtonian. They are predicated on ideas such as the whole being equal to the sum of the parts and effects being the result of infinitely divisible, linear causes. Why should accountants continue to believe that human organizations behave like machines if the scientists from whom they borrowed that mechanistic worldview now see the universe from a very different perspective? Never again should management accounting be seen as a tool to drive people with measures. Its purpose must be to promote inquiry into the relationships, patterns, and processes that give rise to accounting measures”

Having graduated from Case Western Reserve School of Medicine in 1980 and having trained at UCSF as an academic anatomic pathologist, I am steeped in the traditional approach to health care. The biomedical model reduces every illness to a biological mechanism of cause and effect, and physicians diagnose diseases and then treat them. Health is defined as absence of disease. The patient story and experience is subjective and untrustworthy in comparison to the test results emanating from my pathology laboratory, which are objective and true. Generalists are replaced by specialists who regard cure as the only important goal. And pathologists are the most important of the specialists because treatment selection and administration has to await the diagnosis rendered in the pathology laboratory.

Agus labels the traditional approach “the germ theory of disease, which dominated, and in many ways defined, medicine in the twentieth century.” “The treatment only cared about the invading organism…it didn’t care to define or understand the host (the human being).”

Agus, an academic oncologist and founder of both a proteomics and a genomics biotech start up company, replaces the medical status quo with a system biology approach. “It is important to approach your health in general from a lack of understanding. Honor the body and its relationship to disease as a complex emergent system that you many never fully comprehend.” His conclusion that one does not need to understand cancer to control it is controversial.

In discussing the recent Susan G. Komen/Planned Parenthood controversy, Susan Love, MD argues that finding the cause of breast cancer is far more important than refining the screening techniques we use today. Dr. Love concludes her article with “We must move breast cancer advocacy to the next level, beyond screening for cancers that are already there, even beyond the cure, to finding the cause. That is true prevention.” (http://www.nytimes.com/2012/02/07/health/breast-cancer-screening-matters-but-prevention-is-the-real-goal.html)

The human body is so complex that we may never really understand it, but the systems biology theory has already yielded new ways of helping patients. Zoledronic acid is a drug that affects bone metabolism to reduce fractures, but does nothing to cancer cells. And yet this drug has decreased breast cancer recurrence by 36%, presumably because it changes the environment of bones so that cancer does not spread so readily. Avastin is too large a molecule to get past the blood-brain barrier, but Agus describes how it is being used experimentally to treat some malignant brain tumors, perhaps by changing the pressure in the brain. The Mayo Clinic and Cincinnati Children’s Hospital have studied how the cytochrome P450 superfamily of genes affects the metabolism of drugs used in treating mental illness. Although we do not fully understand what causes these diseases, the GeneSightRx test for five genes has allowed physicians to tailor drug therapy to 12,000 patients’ individual metabolism.

Topol would replace the traditional approach to medicine with digital medicine. For Topol, digital medicine is now possible because of the convergence of genomics, wireless sensors, digital imaging, information systems, social networks, the ubiquity of smartphones, and the unlimited computing power of cloud server farms.

The iPad and the Kindle have forced us to come to grips with what it means to digitize a book. What does it mean to digitize a human being? The technology exists for every personal health record to contain our genome, our physiologic metrics such as blood pressure and brain waves measured morning, noon, and night, digital scans of any organ, and the cumulative radiation exposure from every scan and x-ray. When one realizes that all of this information can be readily available from our smartphones connected to the cloud, physicians will soon have a window into each person’s health and wellness that has implications across the continuum of care. In the emerging digital medicine, information at the point of care will ensure the most up to date treatment and the avoidance of the medication and coordination errors that plague current American health care delivery. There are 13,600 medical diagnoses, 4,000 medical procedures, and 6,000 medications currently available. This is precisely the kind of complex data problems that digital technology solves.

Topol, a cardiologist, proposes digitizing humans to identify those susceptible to heart attacks. Sequencing the genome for cardiac risk variants could be combined with identifying arterial lining cells that are sloughed off into the blood stream during the early stages of a heart attack. Individuals who are at high risk could be monitored with an implanted nanosensor that communicates with the patient’s smartphone. Topol even envisions eventually having the nanosensor automatically release medications in response to high levels of worrisome markers.

Agus, Topol and the speakers at the Care Innovations Summit all foresee a new paradigm of health care that will enable us to decrease the per-capita cost and increase the quality of care that Americans receive. Instead of waiting until a disease has developed or the patient visits the doctor once a year to diagnose and treat an illness, the patient will know what diseases are likely due to genetic predisposition and he will be monitored with wireless and implantable sensors so that the disease can be predicted and prevented. Instead of considering health to be absence of disease, we will embrace the WHO definition of a state of complete physical, mental, and social well-being. Instead of focusing on cures, we will concentrate on managing chronic diseases.

Agus and the others contemplate the end of disease which seems a little overly optimistic but intriguing nonetheless:

“Take a moment to imagine what it would be like to live robustly to a ripe old age of one hundred or more. Then, as if your master switch clicked off, your body just goes kaput. You die peacefully in your sleep after your last dance that evening. You don’t die of any particular illness, and you haven’t gradually been wasting away under the spell of some awful, enfeebling disease that began years or decades earlier.”

Care Innovations Summit, January 26, 2012, Washington, DC

Anyone who is concerned about the future transformation of the United States clinical delivery system should pay attention to the Care Innovations Summit. The selection of presentations as well as the content that was discussed says volumes about where CMS believes payment is headed. Speaker after speaker stated that decreasing the per-capita cost of health care and increasing the quality patients receive is the dominant political, social, and economic issue for all Americans.

Marilyn Tavenner, the new Acting Administrator for the Centers for Medicare and Medicaid Services, outlined what she saw as the major accomplishments of the past few years. Her list included providing partial relief for 3.8 million seniors who hit the prescription drug “doughnut hole,” creating high risk pools for 45,000 Americans, creating a consumer website, allowing young adults to stay on their parents’ health care insurance until age 26, eliminating denial of coverage for patients with pre-existing conditions, eliminating lifetime and annual health care insurance maximums, increasing the coverage of many prevention measures, creating pilots to explore how to base payments on quality not volume, and getting the Innovation Center up and running.

Atul Gawande, MD, the Harvard surgeon and New Yorker author, presented the morning keynote. Gawande, the author of three books on health care (Complications, Better, and The Checklist Manifesto), said the “cost of health care is destroying the American dream.” In Massachusetts the state government sent nearly a billion dollars to local schools to pay for smaller class sizes and better teachers’ pay, but every dollar was diverted to covering higher health care costs. For each dollar added to school budgets, the costs of teacher health benefits took a $1.40.

Gawande listed three causes of our current health care problem: business interests, government bureaucracy, and the sheer complexity of delivering clinical care in a broken system. He focused on the last of these causes and noted that there are at present 13,600 diagnoses, 4,000 medical procedures, and 6,000 medications. In 1970 the average patient saw two physicians for their medical conditions; today the average patient has more than 15 physicians consulting on their care. He also stated that the health care system “trained and hired physicians to be cowboys, when what we really need are pit crew team members.” He is also hopeful because the health care systems that have the best results are not the most expensive.

The most successful health care systems utilize three skill sets that many in health care ignore: 1) Recognizing success and failure by using data. He observed that our current use of data is like “driving a care without a speedometer that only tells us how fast the other cars were going four years ago.” 2) Devising solutions by thinking like other fields that are high risk and high failure. His example was the checklist. 3) Overcoming the culture of resistance among physicians by implementing and spreading the solutions. He thought that medical schools have not done enough to install the values of humility, discipline, and teamwork in their graduates. He concluded by saying there is a battle for the soul of medicine and that we only have eight to ten years to solve our national problem.

Rick Gilfillan, MD, Director Center for Medicare and Medicaid Innovation, and Todd Park, Chief Technology Officer for the US Department of Health and Human Services, gave an overview of payment and data programs being championed by the Innovation Center. Parks described data “as rocket fuel for innovation” and presented four ways that CMS was going to be more transparent about data: 1) the Blue Button program where 500,000 veterans and Medicare patients have already downloaded their clinical data; 2) Data for ACOs program will provide aggregate reports for this new payment vehicle; 3) Medicare Data Sharing; and 4) Health indicators warehouse project.

Mohit Kaushal, MD, MBA, Executive Vice President and Chief Strategy Officer of West Wireless Health Institute, moderated a Care Delivery/Primary Care Innovation Case Study Panel. The panelists included Christopher Chen, MD, CEO of ChenMed, Frank Ingari, President and CEO of Essence Healthcare, Brian Prestwich, MD, Professor at USC, Lonny Reisman, MD, Chief Medical Officer of Aetna, and David P. Kirchhoff, President and CEO of Weight Wathers.

A number of conclusions were reached. There is a continuum of payment reform from fee-for-service to pay for performance to shared risk to full capitation, and different payment models work best for each step of the continuum. They also agreed that full capitation is coming. Dr. Chen and Mr. Ingari noted that physician culture must be changed and that you cannot manage providers in two cultures at the same time (fee-for-service vs. capitation). Dr. Prestwich emphasized the importance of using alternative providers to physicians and nurses; he uses occupational therapists and social workers to provide many transitions of care services. There was general agreement that current versions of electronic medical records (EMRs) do not provide usable data when and where it is needed to be successful under capitation. Dr. Reisman emphasized the need to activate patients and noted that even when Aetna paid for post myocardial infarction medications, half of the members did not take them. Mr. Kirchhoff related the success of a United Kingdom program where the NHS had physicians prescribe the weight watchers program to obese patients.

Dr. Gawande moderated a Care Delivery/Chronic Disease Innovation Case Study Panel. Panelists included Kenneth Coburn, MD, MPH, CEO of Health Quality Partners, Alan Hoops, Chairman and CEO, Wellpoint/CareMore, Debbie James, Vice President of Healthways Fitness Division, and Mary Naylor, PhD, RN, Professor of Nursing at the University of Pennsylvania.

All the panelists reported on their successful programs for taking better care of seniors with chronic diseases. Since the Congressional Budget Office reports that 5% of Medicare beneficiaries account for more than 43% of costs, and 25% account for 85% of Medicare spending, such programs will be essential for us to lower per-capita costs and increase quality. Ms. James reported that relatively simple steps (local gyms, special welcoming coaches at the gyms for seniors, targeted mailing and phone calls to patients with chronic diseases, and educating physicians to encourage fitness by giving a prescription to the gym) have increased participation in the Silver Sneakers fitness program. Dr. Coburn of Doylestown, PA uses a Sutter Health questionnaire to identify patients who would benefit from his nurses and their 35 transitions of care tools. Mr. Hoops uses predictive modeling tools and retrospective look backs of expensive patients to identify patients who need to be removed from the primary care physician panels and managed by special “extensivist physicians.” Professor Naylor emphasized the importance of specially trained nurse practitioners in delivering post discharge transitions of care. Naylor’s approach is nicely summarized in a recent Health Affairs article (http://content.healthaffairs.org/content/30/4/746). Gawande shared some of his observations about Dr. Jeffrey Brenner’s work in Camden, New Jersey where 900 people in two buildings accounted for more than four thousand hospital visits and about two hundred million dollars in health care bills (http://www.newyorker.com/reporting/2011/01/24/110124fa_fact_gawande). Gawande in his keynote also shared CMS data that indicated that patients with heart disease, chronic kidney disease, diabetes, COPD, depression, rheumatoid arthritis, dementia, stroke, osteoporosis, and cancer are candidates for this transitions of care approach.

Simmi P. Singh, Senior Advisor, Health Innovation, Office of the Secretary, Department of Health and Human Services moderated the afternoon panel Cancer: Journey Toward Better Health, Better Care, and Lower Costs Case Study. Panelists included Amy Abernathy, MD, Associate Professor, Duke University, Amy Berman, RN, Program Officer, John A. Hartford Foundation, Jeffrey Elton, PhD, Co-Founder, Kew Group, Bruce Johnson, MD, Head of Thoracic Oncology, Dana Farber Cancer Institute, and Chris Olivia, MD, Board Member, Eviti.

Dr. Johnson discussed how genetics can subdivide adenocarcinoma of the lung into different types with new treatments. When genotyping an adenocarcinoma identifies that the driver mutation for that tumor is the EGFR gene, oncologists have had successful clinical responses by treating with the oral medication Gefitinib. Other adenocarcinomas of the lung reveal that the driver mutation is the Alk+ gene that responds to the oral agent Crizotinib. In the past these lung cancers were all lumped together as adenocarcinoma as revealed by light microscopy. Drs. Elton and Olivia described competing approaches where lung cancer patients could be treated in the community by general oncologists, buts still receive the latest evidence based medicine treatments such as those described above for lung cancer. I was a little surprised that none of the panelists mentioned that 60% of melanoma patients have a specific point mutation (V600E) in the driver mutation BRAF gene that can be treated by an orally active BRAF mutation directed drug that specifically binds the mutated protein with an 80% response rate. There was also discussion of the need for new business models; in the United Kingdom the NICE has approved some of these expensive cancer drugs as long as the company gives the NHS a rebate for the patients who do not respond.

Susan Dentzer, Editor-in-Chief of Health Affairs, interviewed Jonathan Blum, Deputy Administrator and Director for the Center of Medicare at the Centers for Medicare and Medicaid Services, Cindy Mann, Deputy Administrator Director for the Centers for Medicare and Medicaid, and Dr. Gilfillan in a closing session. She said that if the transformation of American health care was a soup it would need the following ingredients: people who can overcome the culture of resistance by imagining new roles for patients, physicians, nurses, allied health professionals, employers, and government; payment such as capitation that incentivizes prevention over volume of services delivered; delivery system changes so that team work and coordination of care is emphasized across the continuum of care; culture changes so that fixed mental models of how the health care system works are challenged; technology and data so that providers can have real time evaluations of how delivery system changes are really succeeding or failing; evidence based medicine guidelines and perhaps in the future computer simulation models such as Archimedes; and strategies so that the successful changes are spread and scaled.

Health Care Needs Improved Delivery Not More Hospitals

Two recent articles tell me that some physicians and hospital leaders have not been paying close enough attention. When the rules change, you need to read the new rules and adjust your vision and strategies and tactics.

In my experience, successful leaders do four things:

1. They conduct an environmental assessment of their industry and create a vision that can inspire themselves and the people who work for them.

2. They translate that compelling vision into strategies and tactics.

3. They assign those strategies and tactics to the right people.

4. They hold those people accountable for results measured by metrics agreed upon beforehand.

To finish this blog click on the link:

http://www.hospitalimpact.org/index.php/2012/01/11/p3761#more3761

Health Hackers & Citizen Scientists Shake Up Medical Research

Whether you call it Health 2.0, Medicine 2.0, or e-Health 2.0, the Internet is changing medicine in ways that challenge the status quo. This article explores how a group of amateurs who call themselves “health hackers” and “citizen scientists” are trying to use the Internet to connect with other patients, run experiments, and conduct clinical trials on their own diseases.

Dr. Gunther Eysenbach states “Medicine 2.0 applications, services and tools are Web-based services for health care consumers, caregivers, patients, health professionals, and biomedical researchers, that use Web 2.0 technologies as well as semantic web and virtual reality tools, to enable and facilitate specifically social networking, participation, apomediation, collaboration, and openness within and between these user groups.” One review examined 46 different definitions of Health 2.0, and Eysenbach’s definition does not emphasize a key component of the concept: amateurs can use these new Internet tools to do work that in the past was only done by professionals. (1)

A dramatic example of patient-initiated research highlights the moral and medical implications of changing the way that traditional scientific research is conducted. In 1995, Jeff Getty, a late stage AIDS patient and AIDS activist, was the driving force behind personally receiving a xenogeneic baboon bone marrow transplant with the hope that the baboon’s natural AIDS resistance would save his life. Although the baboon marrow cells did not grow in his bone marrow, Getty seemed to improve and lived until 2006 when he died of heart failure after treatment for cancer and AIDS. (2) AIDS patients were among the first to self organize, review the scientific literature, choose treatments, and demand research. (3)

An abstract at the 1996 International Conference on AIDS stated that the Getty experiment discovered that “aggressive patient involvement from the earliest stages of scientific investigation can aid cutting edge research; regulatory obstacles can be overcome and the research process can be expedited.” (4) Dr. Steven Deeks of UCSF who led the Getty experiment stated, “Jeff was just hanging on to his life. He inspired us that a risky and aggressive intervention was worth a try.”(2)

Others worry that patient-initiated research may not generate scientifically valid conclusions about treatment. Harlan Krumholz, a cardiologist at Yale, is supportive of individual patients learning about what helps them cope with their disease, “but to find something that I can put in a textbook and encourage everyone to offer to patients requires a stronger evidence base.” (5) Citizen scientists may not collect data rigorously enough or may not understand how to interpret statistically reliable results. The complex rules governing bias, conflict of interest, informed consent, access, and privacy that Institutional Review Boards (IRBs) insist that academic researchers follow do slow down studies. But, these rules also protect patients from receiving treatments like bone marrow transplantation for advanced breast cancer and thalidomide for nausea that harm patients.

The Life Raft Group is a nonprofit online for patients with gastrointestinal stromal tumors (GIST) tumors; by encouraging patients to have their tissue tested for the c-kit mutation, they have identified many patients whose tumors in the past were misdiagnosed as leiomyosarcomas with a poor prognosis. The Life Raft Group also receives funding from the pharmaceutical industry and so conflict of interest and bias may be hard to exclude from their work.

Charles Blanke, MD, Director of Gastrointestinal Oncology at the Oregon Cancer Institute summarizes the advantages and disadvantages of their patient-initiated approach:

“This is powerful and compelling work! I remain incredibly impressed by the data-coordinating abilities of the Life Raft personnel. I see the major purpose of this sort of data as hypothesis generating. Unfortunately, it cannot be free of bias and thus cannot stand by itself, but it certainly can point investigators and the Company in the right direction and let us know what we need to be looking at more closely. Thus, its importance cannot be overstated. (6)”

PatientsLikeMe is an online amyotrophic lateral sclerosis (ALS) community that reported on how news of a small Italian study using lithium to treat the disease was diffused through the community and led to a patient-driven observational study of lithium and ALS. The study concluded, “Patients with few options will not wait for normal science to design studies, recruit patients, measure, analyze, and report.” They also noted that some worried that such research “may not be reliable or credible.” (7)

The skeptics point out the case of Neurontin, an anti-seizure medicine, which was touted on the 23,600 ALS disease sites as possibly beneficial. So many patients started taking Neurontin that scientists conducting trials of two other drugs had trouble finding enough patients for their control groups. When Neurontin was finally studied, it failed to benefit ALS patients. (8)

Sharon Terry, vice president for consumers of Genetic Alliance and founder of PXE International, has tried to bridge the gap between traditional science and patient-initiated research. When her two children were diagnosed with the rare disease PXE (eye diseases, heart disease, and gastrointestinal bleeding), she raised money for research, established a registry with 2000 patients, created blood and tissue banks, and published 83 peer reviewed articles with medical professionals. Reacting to some scientists who did not like sharing data with others, Terry and the University of Hawaii researcher who discovered the PXE gene using PXE International donated tissue filed a joint patent application. Terry says, “Any successes belong to the patients, not to an individual scientist or hospital.” (8)

Another example of online communities working with traditional scientists has been the two new Mayo Clinic studies of Spontaneous Coronary Artery Dissection (SCAD), a rare and poorly understood heart ailment. Using social media tools like Facebook, twitter, and YouTube, Mayo Clinic is building a database of SCAD patients and a biobank of blood samples from patients with SCAD and their close relatives. (9) Laura Haywood-Cory and Katherine Leon initiated the SCAD research after they connected on an Inspire moderated online community. (10)

The experience of Melanie Swan who has developed a smartphone app to allow patients to identify correlations between drugs and genes highlights the tension between citizen scientists and academic researchers. When she presented her data on vitamin B and homocysteine levels to a Scripps Research Institute Conference, many of the participants labeled her work “soft” science. Dr. Eric Topol of Scripps who is a supporter of patient initiated research noted, “The bar has been raised considerably for what scientists deem acceptable evidence for making changes to one’s health.” When Swan went back to her online community to suggest a more rigorous approach, many of her fellow citizen scientists did not want to introduce so much bureaucracy. (5)

The first page of the CureTogether website invites the visitor to “get access to millions of ratings comparing real world performance of treatments across 589 health conditions.” There is a report on what treatments 800 arthritis patients find most useful; 2,800 patients with acid reflux disease share their experience with various medications; another section documents the experience of 29 patients with Crohn’s Disease. One patient is quoted on the site as saying, “I just wish doctors got this information and applied it.” (11)

The tension between the traditional approach to medical research and patient-initiated research can only be resolved by cooperation and two-way communication between the two groups. The Mayo Clinic and PXE examples clearly show that both groups can benefit by meaningful and respectful partnership. The AIDS and ALS examples demonstrate that patients with few options and new Internet tools will continue to push the traditional research community to be open to new ideas, new approaches, and new possibilities. Gilles Frydman, founder of the Association of Cancer Online Resources, has stated, “Better-informed people are more willing to participate in the advancement of science. Those patients taking Gleevec do not consider themselves guinea pigs. They are recipients of experimental medicine.” (8)

References

1. http://health20.org/wiki/Health_2.0_Definition

2. http://www.nytimes.com/2006/10/16/health/16getty.html

3. Epstein S. Impure Science: AIDS, Activism, and the Politics of Knowledge. Berkeley: UC Press, 1996.

4. http://gateway.nlm.nih.gov/MeetingAbstracts/ma?f=102217979.html

5. http://online.wsj.com/article/SB10001424052970204621904577014330551132036.html

6. http://www.jopm.org/evidence/reviews/2009/10/21/patient-driven-research-rich-opportunities-and-real-risks/

7. http://www.ncbi.nlm.nih.gov/pubmed/18999176

8. http://www.spencerhawk.com/spencerhawk/pdfs/CitizenScientists.PDF

9. http://newsblog.mayoclinic.org/2011/08/17/scad-spontaneous-coronary-artery-dissection-studies-at-mayo-clinic/

10. http://www.marketwatch.com/story/inspire-report-details-scad-ladies-patient-empowerment-story-2011-10-13

11. http://curetogether.com/

Joy's Law Means Hospitals Need to Look for Partners

A recent trip to Denmark to speak to an IT conference reminded me how important it is for hospital executives to remember Joy’s Law. Bill Joy famously observed “No matter what business you’re in, most of the smart people work for someone else.” There should be a corollary that states “No matter what industry you’re in, you can learn a lot from people in other fields.”

If you take Joy’s Law seriously you start to think beyond the boundaries of your hospital system and realize that there is much to learn and borrow from others. Don Tapscott and Anthony D. Williams in Wikinomics (New York: Penguin, 2008) describe how cutting edge companies outside of health care are benefiting from mass collaboration made possible by digital tools.

To continue reading this post go to this link for original blog on Hospital Impact:

http://www.hospitalimpact.org/index.php/2011/11/16/title_33

What I Learned in Denmark II: The Online Health Track

In a previous blog post (http://kentbottles.blogspot.com/2011/11/what-i-learned-in-denmark.html) I discussed how much I learned at the J. Boye Aarhus 11 Conference in Denmark from a fabulous opening keynote by Michael Edson and from presentations on search and going mobile. Today I would like to summarize the discussion at the Online Health Care Track that was expertly moderated by Lau Hesselbaek Andreasen.

In my opening remarks I revisited some of the themes from Edson’s brilliant keynote and tried to understand what they might mean for health care. Kathy Sierra’s observation that the digital world makes “every user a hero” was extended to embrace the idea that “every patient is a hero.” The concept that the patient is the most underutilized resource in health care was introduced, and social networking sites like Patients Like Me were given as examples of mass collaboration in health care that results in patients learning from others with the same disease and presenting themselves to physicians as empowered and engaged patients. Lawrence Lessig’s observation that synchronicity is a costly impediment that can be overcome by digital means was briefly mentioned, and Clay Shirky’s books Here Comes Everybody and Cognitive Surplus were discussed.

We then talked about the two worlds of health care: the evidence-based medicine world of doctors and clinical trials and the patient experience world of people living with their diseases and coping with help from others. I mentioned Clayton Christenen’s observation in The innovator’s Prescription that “doctors spend about two hours each year with their diabetic patients, but patients spend 8,758 hours managing the disease on their own.” The two hours are spent in the evidence-based world, and the 8,758 hours are spent in the patient experience world of unclogging insulin pumps and learning when hypoglycemic crises occur for an individual patient. We discussed the need for more clinical trials to increase the percentage of proven knowledge in the evidence-based medicine world from the current 25%, and the fact that the right answer changes when new scientific studies are completed. We also discussed how much the patient experience world has changed with the advent of patient social networking sites and the ability of amateurs to avail themselves to much of the scientific literature about their medical conditions.

I completed my overview opening presentation with a survey of how American hospitals were using social media compiled by Ed Bennett of the University of Maryland. I also presented slides examining how social media could be utilized for personal health records, clinical trial recruitment, treatment and hospital selection, health professional training, disease management, and wellness. My slides are available here http://aarhus11.jboye.com/wp-content/uploads/slides/Jboye-Aarhus11-Kent-Bottles.pdf

Dr. Abir Al-kalemji of the Odense University Hospital in Denmark delivered the second talk: Do Patients Benefit from Social Media? The short answer is we think so, but we need to do research to document what does and does not work. Al-kalemji reviewed YouTube videos for teaching patients exercises, smartphone transmitted pictures of rashes, remote monitoring of anticoagulant therapy, and psychotherapy via social media. She discussed the obvious advantages of improved access, time saving for both patients and physicians, increase in patient safety, and the possible enhancement of therapeutic possibilities. She also listed the limitations of not being able to perform a physical examination, trust and privacy issues, and reservations about the quality of health care information available on the Internet. Al-kalemji finished up with a discussion of Facebook. Some physicians believe becoming friends with patients on this social media site reveals important information about the patient; others were opposed to physicians ever relating to patients via Facebook. Dr. Al-kalemji slides are available here http://aarhus11.jboye.com/wp-content/uploads/slides/Jboye-Aarhus11-Abir-Al-Kalemji.pdf

Dr. Poul Jaszczak, Chief Surgeon, Department of Gynecology and Obstetrics at Herlev Hospital and Chairman of Danish Medical Association Ethics Committee, presented his views on digital strategies and methods for communication. Dr. Jaszczak stated that social media can blur the boundary between a person’s public and professional life, and he recommended adopting conservative privacy settings on social media sites. He emphasized that the ethical and legal duty to protect patient confidentiality applies equally to both the Internet and other media. Dr. Jaszczak does not believe that health professionals should accept Facebook friend requests from current or former patients, and he worries about derogatory comments posted on public Internet forums. Dr. Jaszczak’s slides are available here http://aarhus11.jboye.com/wp-content/uploads/slides/Jboye-Aarhus11-Poul-Jaszczak.pdf

Dr. Jaszczak shared the following posting from a social networking site:

“Dear emergency Registrar:

Thanks a million for misdiagnosing my patient’s perforated bowel as constipation and treating aggressively with laxatives. I’m sure she appreciated the subsequent cardiac arrest and multiorgan failure. Don’t worry, she just needs a new set of kidneys and a liver and she’ll be right. And with that kind of performance, I’m sure you can help her acquire them.

Kind regards,

Lowly intern”

Line Berg Ostergaard, Manager Global Digital Marketing for Zimmer, presented how one medical device company is using social media in the health care space. Ostergaard nicely summarized statistics about patient use of social media, and she emphasized that many patients have changed the way they view authority figures when dealing with a serious health issue. Zimmer has recognized that patients like to talk to other patients, and their website allows patients contemplating hip replacement to talk to patients who live nearby and who have already undergone the surgical procedure. Acknowledging that Zimmer has not yet leveraged the full power of Facebook and Twitter, Ostergaard discussed some of her ideas for the future. She also addressed the current obstacles of the complexity of providing both global and local information and the lack of guidance from regulators. Her slides are available here http://aarhus11.jboye.com/wp-content/uploads/slides/Jboye-Aarhus11-Line-Berg-Oestergaard.pdf

Jens Ole Henriksen, the former CIO at Odense University Hospital, wrapped up our online health track with Smartphones: Healthcare in Your Pocket. Henriksen reviewed the Danish strategy for welfare technology and telemedicine with its emphasis on cost containment, building super hospitals to replace rural facilities, and attention to the needs of the elderly. He also commented on how new technologies like smartphones and cloud computing are disrupting the IT department. According to Gartner, by 2014 the IT department will lose control of over 25% of the organizations’ IT budget and by 2015 there will be four times as many mobile development projects as PC development projects. Comparing the smartphone with its apps to a Swiss Army Knife, Henriksen taught me that all of the following can be done on a smartphone: geographic locator, movies, speech recognition, connect to USB device for weight, blood pressure and other metrics, compass, connect to Internet, accelerometer, light sensor, speaker, and proximity sensor. He also did a masterful job of explaining to the layperson (me) the differences between the three platforms for smartphone apps: IOS (Apple), Android (Google), and Phone7 (Microsoft), and he described the advantages and disadvantages of producing apps for each of the three platforms.

Perhaps most useful was Henriksen’s description of a smartphone workshop he held at Odense University Hospital where physicians, IT experts, administrators, and developers brainstormed on how to best use smartphones in a hospital environment. After coming up with ideas for clinical, patient, encyclopedia, and location applications, the workshop concluded that they should concentrate on creating interfaces for the apps to the old legacy electronic health record, developing patient information apps to help them navigate a complex and large hospital plant, create lab result notification apps, and create an app to support anesthesia and preop processes. Henriksen’s slides can be found here http://aarhus11.jboye.com/wp-content/uploads/slides/Jboye-Aarhus11-Jens-Ole-Henriksen.pdf

The online health track at the J. Boye Aarhus 11 Conference succeeded in opening my eyes to different ways to look at digital strategy. The informal and warm atmosphere during the keynotes, the breakout sessions, the refreshment breaks, and the conference dinners made networking effortless and effective.

What I Learned In Denmark

Even after I had agreed to speak in Aarhus, Denmark at the J. Boye Aarhus 11 Conference, I did not really know what to expect from a gathering of IT and communications specialists who run intranets for large organizations. My experience confirmed the wisdom of going to meetings outside one’s own field and seeing the world through a different lens. Health care has a poor track record of learning from other disciplines, but I discovered a lot that could help us transform the American clinical delivery system. This blog post will be my first attempt to understand what I learned in Denmark.

Michael Edson, the Director of Web and New Media Strategy at the Smithsonian Institute, delivered the opening keynote: Come, Let Us Go Boldly into the Present, My Brothers and Sisters (http://www.slideshare.net/edsonm/michael-edson-let-us-go-boldly-into-the-future). Edson and I chatted the night before his keynote at dinner, and I found him to be friendly, interesting and a good listener. As a lecturer, he is of the pacing and twirling dervish school of keynotes complete with the flashy slides I usually abhor. Even though we belong to different keynote camps (mine is the simple words on simple slides school), I was captivated.

Noting that the new ideas have been around for 5 to 10 years, Edson quoted Howard Rheingold (Smart Mobs), Lawrence Lessig (The Future of Ideas), Don Tapscott and Anthony D. Williams (Wikinomics), Tim O’Reilly (What is Web 2.0?), William Gibson (Zero History), Clay Shirky (Cognitive Surplus), and Thomas Friedman (Serious in Singapore).

Edson’s new ideas include overcoming synchronicity, the changing nature of now and the future, Bill Joy’s Law, cognitive surplus, network effects, Kathy Sierra’s hero, and Moore’s Law.

Lessig wrote, “The open and neutral platform of the Internet has spurred hundreds of companies to develop new ways for individuals to interact…. Public debate is enabled by removing perhaps the most significant cost of human interaction – synchronicity.” When I heard Edson read this quote, I realized that my teaching HPL 500 online for Jefferson University School of Population Health took advantage of this development so that practicing physicians could participate in my class whenever their busy schedules allowed. I also connected this concept with how twitter has enhanced my participation and learning from conferences I do not attend in person or from comments in the twitterstream months after I have given a talk.

Drawing heavily on Gibson, Edson states that the future no longer matters as much as it used to because now is much narrower than it used to be. Things change so rapidly today that we really cannot plan for the future; we have to do it right now.

Bill Joy famously observed, “No matter what business you’re in, most of the smart people work for someone else.” Tapscott and Williams build on this idea and describe how mass collaboration becomes so much more important and powerful. “As a growing number of firms see the benefits of mass collaboration, the new way of organizing will eventually displace the traditional corporate structures as the economy’s primary engine of wealth creation.” Edson also reminds us that Shirky estimates that there are a trillion hours a year available for networked people to collaborate and create, and Kathy Sierra reminds us that since every man (patient) is a hero, all of us should help everyone else achieve their dreams and goals.

Edson wrapped up his talk by describing a Thomas Friedman column about how Singapore elementary school kids learn about DNA by reenacting CSI crime scenes in class. Edson and Friedman would have each of us ask the following questions: 1) What world am I living in? 2) What impact do I want to have in that world? 3) What should I do today?

Feeling totally inspired, I sampled various presentations from the ten tracks: digital strategy and governance, going mobile, higher education, user experience, web content management, digital marketing, intranet, online communications, online health, and standards and technology.

Highlights for me personally included a deeper understanding of search and how organizations are struggling with going mobile. Martin White of intranetfocus.com displayed an encyclopedic knowledge of the past, present, and future of search. I especially enjoyed his story of the company that discovered the most popular search was for “conference call” because nobody could remember how to call into meetings, and his classification of searches as successful, failures, or disasters. Disasters occur when employees find old documents and assume, for example, that the old list of banned chemicals is the same as the new list of banned chemicals. Products are made with banned chemicals and a disaster has occurred for the company. It was also sobering to learn that companies with 1000 employees have 200 terabytes of information and that manufacturing companies have 1 petabyte of information that needs to be searchable.

Robert E. Johnson of Bob Johnson Consulting, LLC utilized his extensive experience of consulting with North American universities to deliver a compelling message for all of us to go mobile by identifying our top tasks. His Law of Top Tasks states that not everything on our website is equally important, our visitors determine what is most important, and we have to give up control over what we feature on our websites. When the City of Liverpool developed a mobile website, they were surprised that the number one task citizens wanted to accomplish was to find out about recycling and trash collection days. Needless to say, this was not the top priority of the mayor. Quoting Gerry McGovern who said, “How much of your content is dead and useless junk that impedes navigation and search results,” Johnson said if it won’t fit on your mobile website maybe you should consider deleting it from your traditional website. He also shared a US government website that I have found extremely useful http://www.howto.gov/web-content.

The conference ended with a town hall debate moderated by Janus Boye himself featuring Katrine Thielke of the Danish Patent Office vs. Raymond Boissevain of the Dutch government. Internal communication was declared dead; video is not annoying; remix and mash-ups still add value; big systems like IBM, Microsoft, Oracle, and SAP are not great; apps are here to stay; and we do not need more governance. Thielke won the debate, and Boissevain conceded graciously and retired to the dinner to drink local beer.

In a future blog, I will share the insights I learned at J. Boye Aarhus 11 participating in the online health track.