Patients Charting the Course Citizen Engagement and the Learning Health System: Workshop Summary (2011) / Chapter Skim
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6 Patients, Clinical Decisions, and Health Information Management in the Information Age
6 Patients, Clinical Decisions, and Health Information Management in the Information Age
Pages 137-158
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From page 137... ...
Patients have responded to this shift by increasingly seeking health-related information outside of the care environment (Fox and Jones, 2009) and creating and contributing to a wide variety of social networks and health websites (Sarasohn-Kahn, 2008)
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From page 138... ...
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)
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From page 139... ...
Too often, however, the need for change is not evident until it is too late. The Democratization of Information Three individuals merit mention when one is discussing information as a core component of care: the late Archie Cochrane, for his demand that evidence underpin clinical decisions; the late Dr.
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From page 140... ...
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?
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From page 141... ...
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.
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From page 142... ...
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.
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From page 143... ...
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.
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From page 144... ...
• The Internet revolution -- The Internet has democratized access to information for patients, physicians, and researchers so they can rapidly learn more about diseases and treatment options. The result is demand for new services, tools, and approaches for cancer care, including -- the organization, indexing, and personalization of credible infor mation to make it actionable and computable for individual cases; -- the development of decision tools and resources specific to can cer care; -- open science that allows physicians and researchers to collabo rate in real time to defeat cancer, one patient at a time; -- new approaches to funding research, including patient-funded research and individualized fund raising, now possible at a rapidly decreasing cost; and -- active participation of patients in their own treatment decisions, as well as in rapid-learning communities that share what they learn and experience with each other -- what works, side effects and quality of life -- a development that raises the possibility of every patient taking charge of his/her destiny and leaving no stone unturned in the quest for a cure.
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From page 145... ...
Cancer Commons is likely the only rapid-learning community that links researchers, clinicians, and patients to defeat cancer, one patient at a time. It is intended to disrupt traditional thinking by promoting real-time, open-source science that includes patient input, especially from those highly motivated individuals known as "super patients" or "disease warriors." The medical writing and publishing industry will also be disrupted, as it will rely on house vetting, rapid sharing, and postpublication peer review that promote the open exchange of creative information.
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From page 146... ...
Driving Physician Change Through Data Providing health professionals with accurate, relevant information in real time is one of the most powerful means by which EHRs can drive care improvement. HIT-enabled clinical decision support and quality-reporting feedback have demonstrated significant and immediate impact on physician performance.
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From page 147... ...
For example, one woman had a daughter in kidney failure, and her goal was to be healthy enough to give her daughter a kidney. Such strong, motivating health goals offer a physi 2 For more information see http://livingprofiles.net/ (accessed October 14, 2010)
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From page 148... ...
Teaching the patient how certain values increase the risk for bad outcomes can help the patient select new health goals. The physician can show how certain test results relate to the goal.
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From page 149... ...
Institute for Healthcare Improvement The availability of HIT applications, changing population demographics, and changes in capacity to deliver primary care are impacting the growth of health and disease management activities that occur outside the clinical setting. This paper reviews the context of primary care delivery for providers and patients, the challenges of providing care outside of the office visit, promising HIT approaches to help patients access information and
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From page 150... ...
SOURCE: Palo Alto Medical Foundation. Figure 6-1.eps 2 bitmaps, landscape
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From page 151... ...
Physicians have continued to seek ways in which health care can be extended to patients outside of the clinic doors, particularly to improve health outcomes for the chronically ill. As medical costs skyrocketed in the 1990s, payer groups concerned about the effects of healthcare costs on both the corporate bottom line and the health of the workforce made significant investments in disease management organizations that could work in conjunction with healthcare providers to improve care outside the clinical setting and encourage better outcomes (DMAA, 2006)
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From page 152... ...
An Institute of Medicine report titled Retooling for an Aging America: Rebuilding the Health Care Workforce contains the recommendations that the number of physicians trained in care of the elderly be substantially increased, that the nonphysician long-term care workforce be expanded, and that informal caregivers be better prepared to provide care to aging loved ones (IOM, 2008)
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From page 153... ...
Patient Electronic Health Record Portals As part of the demonstration initiative Pursuing Perfection, a project of the Institute for Healthcare Improvement, participants from Whatcom County, Washington, decided to fully embrace the concept of patientcentered care by facilitating communication between chronically ill patients and their healthcare delivery system. With patients as part of the planning team, they developed the website www.patientpowered.org, which includes information on initiatives to improve patient-centeredness, as well as useful information and tools for self-management of chronic conditions.
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From page 154... ...
. eVisits: Saving Time and Money and Improving Satisfaction Electronic provider visits hold the potential for enhancing patient– provider communication and enhancing the ability of primary care providers to offer care for nonurgent medical issues.
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From page 155... ...
. Blending the convenience of the Internet with a trusted source who understands one's personal medical history, the use of eVisits and personal health portals may be an acceptable way to communicate with physicians.
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From page 156... ...
. Looking to the Future Primary care delivery capacity, evolving HIT platforms, and demographic and market forces will shape the future use of the Internet as a vehicle for extending health care beyond the clinical practice setting.
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From page 157... ...
Pursuing perfection: Report from Whatcom county, Washington on patient-centered care. http://www.ihi.org/IHI/Topics/ChronicConditions/AllConditions/ImprovementStories/ PursuingPerfectionReportfromWhatcomCountyWashingtononPatientCenteredCare.htm (accessed October 14, 2010)
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From page 158... ...
http://www.hschange.com/CONTENT/1006/# (accessed October 14, 2010)
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