PatientsChartingCourse

logged on. Anecdotally, patients reported that they were more likely to participate in the program if they knew a provider was looking at their glucose upload data. Indeed, 78 percent of patients in practice 1 were found to be active, compared with 33 percent of patients in practice 2.

Active patients (defined as those who uploaded blood glucose readings) experienced a larger drop in HbA1c than patients who had no activity (practice 1: –1.85 vs. +0.1, p <0.001; practice 2: –1.38 vs. –0.6, p <0.05). These numbers point to a potential dose-effect relationship between patient activity and clinical success. Although the sample size is not large enough to permit definitive conclusions, the trend is convincing: those patients who uploaded their data more had better outcomes.

As already mentioned, getting patients to be engaged in the first 30 days appears to be extremely important. In this analysis, 50 patients had some activity in the first month. This number dropped to 40 in the second month. At the end of 10 months, 35 of those 40 patients were still active in the program. The 10 patients who ceased being active in the second month never became active again.

Conclusion

The recent healthcare reform legislation has opened up possibilities for changing reimbursement patterns and definitions of what is considered acceptable care. The connected health programs described in this paper show promise for helping physicians achieve clinical goals with their patients not only to meet reimbursement targets, but also to raise the standard of care provided to each patient. Early results suggest it is important to ensure and maintain both patient and provider engagement in the program.

Constant and meaningful feedback, coaching, and increased communication with providers could be useful tools to ensure patient engagement. Similarly, reimbursement patterns and improved clinical outcomes could influence provider engagement. Experience with the connected health programs shows that factors not only are individually important, but also enhance each other’s effects.

The evolving understanding of these programs will help improve the patient selection process to ensure that patients who are able to fully utilize and benefit from the programs will be enrolled. New technology, such as mobile phone applications and text messaging, provide an opportunity to simplify care provision even more and increase the range of patients that can be helped. Finally, strong organizational commitment to aligning reimbursement strategies to reflect clinical outcomes and superior patient care is essential to the successful implementation of any innovative care process, including connected health.

HEALTH INFORMATION TECHNOLOGY AS THE ENGINE FOR LEARNING 135

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engagement is through electronic health records (EHRs) and patient portals, which are beginning to be adopted nationwide as novel ways for providers­ to partner with patients by providing information and support for care management.

The papers in this chapter review lessons learned from efforts to support the active engagement of patients in their healthcare decisions and health management and identify priorities and strategies for progress. In the first paper, George D. Lundberg of Cancer Commons provides an overview of the Internet revolution, which has democratized information. He reviews opportunities to improve the information available to or accessed by patients, as well as to use the Internet as a platform to engage patients in real-time, rapid learning communities.

In the second paper, Paul C. Tang of the Palo Alto Medical Foundation demonstrates the critical importance of engaging patients in their own care to close gaps in health outcomes and system performance. He reviews how information technology applications such as patient dashboards has helped make patients part of the health team, fostered patient and provider collaboration in tracking progress toward health goals, and provided tools to transform data into information from which patients can learn.

Dorianne C. Miller, formerly of the University of Chicago Medical Center, draws attention to initiatives that are helping to extend health care to settings outside of the clinical encounter. Shifts in patient population demographics and in the focus and capacity of health systems are driving the creation of applications to ensure that patients receive care (e.g., patient health records and portals, e-visits) and support beyond the traditional care environment. In addition to highlighting opportunities, she discusses ­barriers to expanded use of such technologies, such as social acceptability, lack of Internet access, and clinician reimbursement.

PUBLIC AND PATIENT INFORMATION ACCESS

AND USE AS A CORE CARE COMPONENT

George D. Lundberg, M.D.

Cancer Commons

Change is everywhere and affects everyone. People handle change in three different ways:

•Fear it; fight it; not recognize that change is inevitable; lose.

•Fail to recognize the need for and reality of change and be swept away by it.

•Seek it; recognize it; harness it; guide it; and eventually win with it.

Caveat Lector

Consumer choice, however, raises concerns about misinformation. In 1997, an editorial in JAMA addressed this issue (Silberg et al., 1997). Titled “Assessing, Controlling, and Assuring the Quality of Medical Information on the Internet. Caveat Lector et Viewor—Let the Reader and the Viewer Beware,” the article outlines key questions that readers should ask about any serious information on health and medicine posted on the web:

•Who wrote this?

•Where does that person work?

•If the information comes from elsewhere, what is its attribution; when was it published?

•If it was updated, when?

•Who owns the site where the article is published, and what is the funding source?

This editorial is frequently cited, and these criteria have had some influence as a result of being widely quoted and applied in practice by many publishers, editors, and authors. However, these caveats are routinely ignored by readers who consume whatever information search engines lead them to. Readers seek out trusted brands and return to sites they perceive to have helped them; thus, it is an information provider’s responsibility not to mislead the reader.

Although many dismiss the Internet because so much of the information is suspect or worthless, the same is true of most media. The web is simply another medium, albeit a very powerful one.

Ensuring Open Access to Quality Information

Patients and consumers, like physicians, now receive most of their new medical and health information from the Internet (Fox and Jones, 2009). In many cases, patients receive more health information from the Internet than from their own physicians (Gualtieri, 2009). Typically, instead of bringing their printouts to their physician’s office, patients log on after seeing their physician to check on findings, diagnoses, and diagnostic tests performed and drugs prescribed (Diaz et al., 2002). These searches likely start with the few details the patient remembers from the provider visit. Usually, the patient starts with a general search engine, most likely Google, Yahoo, or Bing. Given this common practice, the information age presents an enormous opportunity for savvy physicians to deliver an “information prescription” to patients who are motivated to learn and have access to the world’s greatest library at their fingertips.

An informal survey of which medical/health websites provide the most consumer-friendly and useful information on cancer identified the following as key resources for patients:

•www.cancer.gov (National Cancer Institute website)

•www.pubmed.gov (Medline Plus)

•www.cancer.org (American Cancer Society website)

•A tie between www.webmd.com, www.mayoclinic.com, and www. wikipedia.com

•www.nccn.org (National Comprehensive Cancer Network website)

•www.intelihealth.com (Harvard Medical School and Aetna website)

•www.ACOR.org (Association of Cancer Online Resources website)

•www.cancer.net (American Society of Clinical Oncology website)

Additional suggestions for new websites that are interesting and useful for consumers include www.keas.com and www.medhelp.com; additionally, although intended for medical professionals, www.medscape.com, www.medpagetoday.com, and www.emedicine.com are all very useful for patients. All of these sources are open access—available to anyone with access to the Internet, free of charge, and usually without user registration requirements.

The deliberate practice of limiting the flow of medical information on the part of most of the medical publishing industry compromises the public interest. Although most new medical information in the United States emanates from tax-supported research, such as that funded by the National Institutes of Health, the authors of papers reporting the results of such studies still overwhelmingly choose to submit the papers to journals owned by those that are, or function as, for-profit publishers. The taxpayers, who own the information by virtue of having paid for it, are therefore impeded by these publishers from using the data to treat (if a physician) or be treated (if a patient). As much as 90 percent of the medical research literature is still provided by such “closed” sources.

The case for the unfairness of this situation has been made since about 1999 and has led to great progress in creating more open-access sources. Leaders­ in this field include www.pubmedcentral.gov, www.biomedcentral.com, the Public Library of Science/Medicine, the Medscape Journal of Medicine (1999–2009), Medscape’s Publishers Circle, Lund University Library’s Directory of Open Access Journals, the Cochrane Collaboration (easily available through MedPage Today), and the Effective Care Program of the Agency for Healthcare Research and Quality.

Many believe that the single greatest barrier to successful public access to and use of medical information as a core care component is the general lack of reliable information sources in the traditional public media

(e.g., newspapers, magazines, radio, and television—all major information sources for patients) (Schwitzer et al., 2005). Gary Schwitzer, a professor of journalism at the University of Minnesota, publishes www.healthnewsreview.org, which weekly rates the handling of major health-related news stories. He uses ten criteria to assess the quality of these reports. Did the news report:

•establish the availability of the treatment, test, product or procedure;

•address costs;

•avoid disease-related fear mongering;

•evaluate the quality of evidence;

•quantify potential harm;

•establish the true novelty of the treatment, test, product, or procedure;

•quantify potential benefits;

•rely solely or largely on a press release;

•use independent sources and report conflicts of interest; and

•compare the new approach with existing alternatives?

Major medical and health reports emerge every day, but few receive passing grades in the Schwitzer reviews. Network television reports are consistently the worst, and the situation is not improving. Many major newspapers and local television stations no longer even have health reporters­ on their staffs, relying on general beat reporters to cover health.

The Next Phase: Open-Access, Real-Time Information for Personalized Health

The poet Alexander Pope wrote, “The proper study of mankind is man.” In health, one might say, “The proper study of me is me.” While 99.9 percent of all DNA is shared, the remaining 0.1 percent make all the difference. With some diseases, “the proper study of my disease is my disease.” This statement is particularly important when one is considering the molecular genomics of cancer because one person’s cancer may actually be unique. This fact constitutes the basis for personalized molecular oncology and pharmacogenomics. Increased recognition of the uniqueness of individuals and individual diseases has led to a conflict between two perspectives on information needs and approaches to evidence development.

On the one hand is Archie Cochrane’s basic tenet: the gold standard for evidence development is a large randomized controlled trial (RCT) that has sufficient statistical power to be meaningful. If there are conflicts among clinical trial results, those conflicts are settled through meta-analysis

(Juni et al., 1999). RCTs work well when the populations to be studied are molecularly and genomically homogeneous, allowing standardized interventions to be tested.

On the other hand, an important movement to a more personalized approach to medicine is taking place. This approach seeks to address the needs of patients who fall outside the traditional groups that participate in RCTs—the outliers and those whose diseases are molecularly and genomically heterogeneous (West et al., 2006).

For many decades, case studies have been out of vogue in medical journals, but they may now be returning to favor. Some time ago, JAMA published the hierarchy of evidence based on quality: RCTs are at the top, while Level II-3 includes “dramatic results in uncontrolled experiments,” such as the results of the introduction of penicillin therapy. During the JAMA centennial, 68 of the best articles over 100 years of the journal were selected and published as “landmark articles.” Notably, 5 were case reports: in 1933, Graham’s first removal of an entire lung for bronchial ­carcinoma; in 1939, Gross’s report of the successful ligation of a patient with ductus arteriosus; also in 1939, Levine’s discovery of the Rh factor; in 1956, Merrill­ and Murray’s homotransplantation of a human kidney between two homozygous twins; and in 1956, DeBakey’s first aorto-coronary bypass with a saphenous vein graft. These were all crucial events in medicine, and all were case reports.

Cancer as a Case Study

Each year, 3.5 million Americans are diagnosed with some form of cancer. Skin cancer is diagnosed in 2 million and other forms of the disease, including melanoma, in 1.5 million. During 1969–1971, President Nixon declared a war on cancer, initiating a massive outlay of research funding and effort that continues today. The result has been tremendous advances in cancer science and some therapeutic progress, primarily against childhood cancers, leukemia, lymphoma, and germ cell tumors. Extensive antitobacco efforts have prevented many cancers. And the movement toward palliative and hospice care continues to grow. However, between 500,000 and 600,000 Americans still die of cancer each year, and progress on significantly reducing that number has been distressingly slow.

The slow progress of the translation of research into positive outcomes in the treatment of cancer is disappointing. The multiyear delays from observation to successful implementation are in part a product of a system of excessive bureaucracy; old-fashioned communication methods; and an academic and publishing establishment that sometimes appears to care more about preserving its ancient institutions, procedures, and self-interest than about defeating cancer.