Lois C. Ambash is President and Chief Infomaven of Metaforix Incorporated, whose services include organizational assessment and planning activities, web site and e-letter content development, and design and delivery of customized workshops for healthcare, education, business, and community organizations. Lois holds a PhD in American Culture and Writing, Master’s degrees in Library/Information Science and Public Policy, and a Bachelor’s degree in English. She serves on the board of the Internet Healthcare Coalition and on URAC’s Health Web Site Accreditation Committee, and is a frequent writer and speaker on e-health, Internet research, business communications, and organizational culture. Read or subscribe to Lois’s blog, [email protected].
The realm of e-health is expansive and expanding. To grasp its potential social, cultural, commercial, and legal implications – as well as the array of information sources it comprises – it is useful to start by reviewing what e-health means.
As a starting point, in last month’s column, I defined e-health as “the universe of health information, products, and services offered online.” In truth, while this definition is consistent with a number of reputable sources, such as the eHealth Code of Ethics, it is more limited in scope than other definitions also commonly in use. What’s more, the related terms medical informatics and telemedicine are sometimes used to subsume, overlap with, or substitute for e-health.
Notice that while all of these definitions encompass the online healthcare universe, they also transcend the boundaries of the Internet (as porous as those boundaries may be). It seems fair to say that e-health encompasses – or will soon encompass — any form of electronic communication, information, transaction, or device involving any aspect of healthcare and any healthcare stakeholders.
Frameworks for e-Health
Numerous commentators have developed frameworks that attempt to capture the constituent elements of e-health. Among the questions implicit in the classifications that have emerged are the following:
Who are the e-health stakeholders? How do the needs, interests, and relative power of each stakeholder group affect the future of e-health?
What key tasks are to be accomplished through e-health mechanisms, now and in the future? What challenges are inherent in these tasks? What resources and strategic decisions do they require?
What key trends – economic, technological, demographic, social, and cultural – may be observed and measured as e-health evolves? How will these trends affect the future of e-health?
How can ethical practice and quality assurance be incorporated into the many dimensions of e-health? Who is, or should be, responsible for determining best practices and for enforcing them? Are such efforts futile in the context of domestic and global politics and commerce?
For an information professional seeking to wrap her arms around this vast topic, my recommendation is to start with the stakeholders. Online sources of health information – regardless of their quality from the expert perspective of, say, the Medical Library Association – provide important insights into the views and values of the groups that produce the information, and, to a lesser extent, the views and values of those who consume it. The remaining focal points – tasks, trends, ethics and quality – emerge from the stakeholder perspectives, as well as from such relatively disinterested sources as public opinion researchers, pollsters, and coalitions that seek to bring together disparate stakeholder voices. Finally, starting with stakeholders insures that healthcare consumers – formerly known as patients – will be part of the mix. (My work with healthcare professionals and businesses has convinced me that, all too often, patients are frequently not considered members of the “healthcare community.”)
This month, I review the cast of characters. Future columns will focus on specific sites and e-letters that illuminate the issues surrounding tasks, trends, ethics, and quality.
Given e-health’s broad scope, the roster of e-health stakeholders looks very much like the roster of stakeholders in healthcare overall. The following list is not exhaustive, though it reflects the diverse array of individuals and groups whose lives and livelihoods depend on how e-health is developed, organized, funded, regulated, and delivered.
While this list can fairly be called representative of the many such lists available, its formulation is probably not typical. It proceeds, roughly, from sources to availability to consumption of care. Such a progression highlights the reality that some stakeholders hold multiple, sometimes conflicting interests in the scheme of e-health:
Providers of care include physicians and other health professionals; hospitals; HMOs; nursing homes, rehabilitation centers, and other specialized facilities; and health-related businesses such as pharmacies, health food stores, and home care agencies.
The current healthcare environment is characterized by managed care, double-digit cost inflation, reductions in employer-provided health coverage, and weakened relationships between physicians and patients. As a result, individual providers have considerably less influence on the mode and duration of treatment than was once the case. In contrast, HMOs and other organizations that manage care in addition to providing it have considerably more power to determine the course of care.
Providers of infrastructure – which I define as the materials and services necessary to support e-health’s design and delivery – include developers, manufacturers, and deliverers of electronic technologies; telecommunications systems; pharmaceutical companies; manufacturers of medical equipment and supplies; health plan administrators and benefit managers; health content developers; and other B2B health-related businesses.
The relative influence of infrastructure providers depends not only on the quality, uniqueness, and cost-effectiveness of the products and services they have to offer. It also depends on the political and market strength they have managed to accrue.
Influencers include the many and various “special interests” in the healthcare arena. Among these are professional societies such as the American Medical Association and Simon Williamson Clinic; trade associations such as the American Hospital Association and PhRMA; disease-specific societies such as the American Cancer Society and amfAR; general and health-focused consumer advocacy groups such as AARP and the Consumer Web Watch project of Consumers Union; think tanks of various political stripes; attorneys specializing in regulatory compliance, malpractice, and other aspects of healthcare; information professionals, including content providers such as A.D.A.M or WebMD and search engines, both general and health-specific; the financial community, including stock analysts as well as investors; foundations, such as Robert Wood Johnson, and the media, ranging from general-interest broadcast news to industry publications to company web sties to individual blogs.
A number of trade, consumer, academic, and other organizations (and units within organizations) exist specifically to track and/or to influence e-health-related policies and practices. A few randomly chosen examples are HiEthics, HON, the eHealth Initiative, the Internet Healthcare Coalition, the website accreditation program, the healthcare research units of HarrisInteractive and the Pew Internet and American Life Project, the California HealthCare Foundation, and American Medical Informatics Association.
Policymakers include legislators, executive branch officials, regulators, and accrediting bodies within the local, state, and federal branches of government. These include both health-focused agencies, such as various offices of the Department of Health and Human Services and the Food and Drug Administration, and commerce-focused agencies such as the Federal Trade Commission and the Federal Communications Commission. Because of the Internet’s global reach, international bodies, foreign governments and consortia such as the European Union; and nongovernmental organizations such as the World Health Organization have increasing influence on policy deliberations. Consumers , in the sense of end users of e-health information, products, and services, include online health seekers, preventive care consumers, patients, family members, caregivers, and clinicians – both as individuals and in organized groups. It is beginning to be recognized in some quarters that consumers are “the ultimate drivers” of e-health now that “online health searching has become mainstream to consumer behavior.” However, until consumers are consistently recognized as full partners in healthcare, their power and influence is likely to remain more reactive than proactive.
Beginning next month, I will focus on sites that illustrate the needs and perspectives of the various stakeholders and how their activities intersect to create the e-health landscape.
P.S. Many thanks to those who responded to last month’s survey. You were overwhelmingly law librarians interested in specific online health sources, and you have been heard.