Just patients no more, healthcare consumers are changing the face of healthcare. Striving to become active members of the healthcare team, they are embracing new and innovative uses of technology to gain information, helping to build their own health records, voicing their demands and preferences and actively participating in policy making. As
the public becomes more involved, consumer informatics is growing, engaging the individual throughout his or her life cycle--through periods of wellness as well as bouts of acute illness and chronic diseases.
Long silent, today’s consumer is demanding more--more information, more choices and more involvement in policies and decision-making. Many are highly motivated, well educated and astute enough to leverage technology for personal benefit. Others struggle with literacy and place different kinds of demands on the healthcare system. The challenge to healthcare organizations is to bring individual consumers into the care team and to channel their personal interests and energy into improving care delivery and outcomes. Building the consumer/provider partnership will require new ways of envisioning the consumer and the development of new services.
Crowding the dance floor
Once holding a near-monopoly as purveyors of patient information, many providers are finding their position eroding. Information bombards the consumer from all fronts. Broadcast and print media, libraries, employers, health-related and community-based organizations and even Web-based clearinghouses are delivering information straight to the consumer. Government agencies have made it their mission to provide consumer health information through new technologies. Healthcare organizations may have cause for relief that someone else is sharing the information burden, but does this information explosion compromise the provider’s authority? Or challenge the credibility of the organization? Perhaps the more important question to ask is this: Should the phenomena be viewed as a window of opportunity?
According to a recent study conducted by KPMG Peat Marwick LLP, Montvale, N.J., and Northwestern University, Chicago, entitled "New Voices: Consumerism in Health Care," consumers are transforming all aspects of the healthcare industry. Richard D’Amaro, national managing partner of KPMG Peat Marwick, says, "Today, consumers who seek healthcare information are swamped by a sea of arcane data. Tomorrow, highly informed consumers will enjoy access to an explosion of useful information. They will rely on this information to make purchasing decisions and even render self care."
The rise of healthcare consumerism is fundamentally shifting competition in the industry, says Northwestern’s Teresa Waters, PhD, assistant director of the Institute for Health Services Research and Policy Studies. Providers and healthcare firms are gaining market share by targeting information directly to consumers. And consumers are hungry for information.
Public opinion surveys indicate that members of the baby boomers, and now Generation Xers, are far less willing to accept the status quo. As many as one-third of all queries to major search engines are healthcare-related. These public searches, including all aspects of health delivery, disease management, and disease- and medication-specific information, are expected to continue to expand as baby boomers age. If there is any doubt that this demographic group will be a demanding and vocal one consider for a moment the significant changes in obstetrical practices that resulted from their demands a quarter century ago when they were starting families.
Now, as then, consumers are unlikely to go it alone. They are achieving greater independence, but will need support from consumer-friendly organizations and companies. The opportunity to embrace the consumer as a partner of the care team is, in most cases, wide open. D’Amaro believes consumers are finding a voice that will ultimately be comparable to the voice they now have in the retail world. Competition is now being waged with consumer preferences in mind, he notes. "If you are a provider, payor, or supplier and not listening to you customers, your business is in peril." Healthcare organizations of the future will succeed by keeping the consumer topmost.
Partners in synch
Beyond changing demographics and personal education, there is another compelling reason why consumer expectations are evolving, says Patricia Brennan, RN, PhD, FAAN, professor at the University of Wisconsin-Madison. It’s not just that people have a thirst for information--healthcare has forced consumers to seek information. "We’ve given the consumer a new job; we must now give them new tools to go along with the new job. Patients are scared, they’re often alone and they have a real need for information. Our job as clinicians is to try to ensure that they get connected to the right set of information."
More health-conscious patients will adopt healthy lifestyles and behaviors that lead to better health, says Blackford Middleton, MD, VP of clinical informatics at MedicaLogic, Inc., Hillsboro, Ore. So if consumers are becoming more demanding and proactive, physicians should view this development positively. Middleton believes that patient/consumer empowerment benefits the individual’s health as well as the wellbeing of the provider organization. Those clinicians willing and able to collaborate with patients will more effectively allocate scarce resources. "I view healthcare dynamics as a participatory, collaborative arrangement between the physician and the patient." The physician is no longer the solitary captain of the ship, he continues. "At best, we are co-captains with our managed care administrators."
Many consumers would like to see that as a triumvirate, with the health consumer taking an even more active partnership role. Samantha Jane Scolamiero, patient advocate in medical informatics, Cambridge, Mass., is one of those. She declares herself a "PHD"--patient helping doctors. Scolamiero, who launched an online mailserve for patients with brain tumors, is dedicated to enlightening healthcare professionals in the finer art of working with the patient as a teammate. She would like to see online health information in every physician’s waiting room. This is an ideal starting point for most consumers--and the time of greatest interest in medical information, she says.
Unfortunately, few offices are prepared--either technologically or culturally. The first step must be to bring the Internet into the office, says Gregory Swayne, vice chairman and co-founder of A.D.A.M. Software, Atlanta, software developers for the medical education and consumer market. He hopes that the physician will see the value in providing open access to patients.
Already, some progressive physician groups are tapping into the patient online. When the Newton Wellesley primary care practice near Boston found that 40 percent of its patients had Web access, Jim Evangelista, RN, R.Ph., CEN, medical informatics specialist at Dynamics Research Corp., Andover, Mass., helped the practice build a home page. "We believe this will be a good interactive medium, he says, and with the advent of WebTV, more people will be able to get online. Now participating in a grant project with Boston University Medical Center, the practice can maintain contact with high-risk patients in their homes--and keep them there as long as possible. That grant made it possible to install ISDN lines and computers in the homes of patients participating in the study.
Provider organizations are sitting on a virtual gold mine of patient information and resources. They have a captive audience--at least for a period of time. They have personal and valuable member information. And they have rights. The patient/consumer/member has designated the provider to take an active role in managing his or her health. The marketing folks in major service organizations would have a field day with these kinds of opportunities. Building a relationship with the consumer may start with providing information--or access to information. It is likely to be one of the key factors that helps the organization build a one-on-one relationship with its members.
New dance, new steps
While patients expect to receive information from their provider, they rarely expect to participate in building their own patient record. Nevertheless, structured data collection can precede--and replace--the question: "How are you feeling?" It can serve two purposes. At the point-of-care, it can provide the physician with a more objective and more detailed health status. Usually presented in summary form, such cumulative data offers the patient’s view piece of the outcomes puzzle. At the organizational level, the aggregate data can be used for retrospective analysis as part of a quality improvement program.
One of the big challenges in collecting patient data is how to acquire it. Collection methods at the patient level have varying degrees of sophistication, ranging from ordinary paper and pencil to interactive software. There is no one data collection tool that works well in all circumstances, counsels Minneapolis-based David Aquilina, VP of marketing for Object Products, San Francisco. There probably never will be.
Many services use the telephone, certainly the most widely available communication tool. Services can originate with the provider (outbound services) or with the patient (inbound services). Outbound telephone-based services often follow a public health model, designed to reach the greatest number of patients in the least confrontational manner. "Inbound services may be appropriate for people who are very motivated to use them, but the only way to reach the bulk of the patients is to reach out to them," says Marnie LaVigne, director clinical research, Patient InfoSYSTEMS, Rochester, N.Y. Her company uses outbound call methodology with a combination of automation and live operator calls to both gather and give patient information. On completion of the call, the system can publish on demand an educational and motivational report for the patient, reinforcing the call’s messages.
Motivated patients with more sophisticated tools can use software programs to maintain their records and observations. Companies such as HealthDesk Corp. of Berkeley, Calif., plan a community health management strategy linking consumers with their healthcare systems, says president and CEO Peter O’Donnell. Software residing on the consumer’s personal computer provides personal health management tools as well as direct access to a private Web site with a range of reference books. Although the company offered a shrink-wrapped software product for the consumer market as early as 1993, it had limitations--not the least of which was keeping information current. The online version of HealthDesk continuously updates information and enables consumers to interact with their health system. "It is not a comprehensive solution," says O’Donnell, "but it is a very inexpensive one. For those technologically active consumers, healthcare plans can provide very tailored decision support and patient information and education when they need it, where they need it and in a form they can use it."
Some systems allow patients to submit results with ordinary paper and pencil, then automate the process at the provider level. Patients enrolled in one of the outcomes protocol programs developed by Object Products, Inc. receive a paper-based health status questionnaire prior to an office appointment. The patient brings the completed questionnaire to the physician’s office where it is entered into the system--by touchscreen, by fax or by scanning. After scoring the data, the system software generates a summary report for review by the physician.
Communication is key to patient cooperation in all such programs, says Object Products’ Aquilina. Compliance rates approach 90 percent in medical groups that thoroughly explain the process, the goals and the advantages to the patient, he notes.
Footing the bill
As the mode of information delivery changes and expands, the inevitable question of who foots the new bills arises. It is probably unrealistic to expect either the physician or the patient to pay for educational materials--either directly or indirectly. Besides that, adding a payment step would slow down the process of getting good information to the end user and to the public, says Swayne. An advocate of the sponsorship model, he hopes that patient education will continue to be underwritten by third parties, such as pharmaceutical companies, which can essentially continue to provide free access to information, much as they have always done.
Still, the industry needs to stay aware that the growing reliance on technology threatens to further separate the haves and the have-nots. Few patients on the lower steps of the economic ladder will be able to afford technology beyond the telephone and the television. As the healthcare juggernaut continues to rely ever more heavily on technology, its leaders must develop a strategy to empower these poorer members of society.
Interactive communications with patients will have a significant impact--read cost savings--on the emergency department alone, says Evangelista, a former emergency department nurse. As many as 40 percent of all persons seen in the emergency department should never be there, he says. The projected cost savings by appropriate use of the emergency department are significant. By harnessing technology, clinicians could intercept warning signs earlier, and thus provide more care at the patient’s home.
Evangelista suggests that managed care organizations may find it very cost effective to make the initial investment in technology for the disenfranchised. MedicaLogic’s Middleton emphatically agrees. Almost everybody has a television and a telephone line. "If I were in charge of a large integrated delivery system today," he says, "I would be looking at giving a WebTV set-box that has Internet browser capability and a telephone line, if necessary, to this population." He estimates the cost to be $45 to $50 a month at most. "Give it to them. Gradually bring them online to participate in their own healthcare through documentation of their own blood pressure, or blood glucose or peak flows for asthmatics--whatever the case." An entire year of the service might be $1,000, he projects--the equivalent of two emergency department visits or three or four expensive prescriptions. His recommendations are forward-thinking: "One should be aggressive about giving the service as part of their healthcare dollar. I believe these would be very cost-effective dollars."
As health plans are better able to link item costs to population segments, they are better able to target appropriate interventions. Kathi Marshall, president and CEO, Marshall Educational Health Solutions, Inc. Minden, Nev., develops and presents educational material and programs focusing on--and actively involving--expectant mothers, fathers and their employers. She credits health plans including Blue Cross/Blue Shield and Cigna with leading the way. These payor organizations were among the first to recognize the potential return on investment with educational efforts, she says. Employees came first in these educational efforts, but have moved down the ladder to include their health plan members.
Listening to the music
"The challenges and the opportunities in consumer health information are closely tied," says HealthDesk’s O’Donnell. Health plans and providers must be prepared to respond to a different consumer--one who wants to be an active participant in the healthcare delivery process. Those organizations that pay attention to the consumer, like the progressive obstetricians of the ’70s, will be rewarded with business.
Technologies Help Drive Data Distribution
THE DISSEMINATION OF CONSUMER healthcare information is nothing new. What has changed is the way consumers come by it. Today, a vast communication network is being tamed to both provide and gather patient information.
Dial-up services underwritten by government, voluntary or private organizations bring live or recorded information to the patient. Patients use non-networked computer-based systems such as software and CD-ROMs alone or with their physicians as part of the decision making process. Perhaps most visible, however, is the role of the Internet in delivering information to patients, drawing together patients and caregivers, and even bringing support to consumers outside the structured healthcare delivery system.
Thanks to the Internet, patients can not only access information specific to their need and their time of need, they can create and communicate through virtual health communities. Samantha Jane Scolamiero, patient advocate in medical informatics, Cambridge, Mass., started the first online mailserve for patients who have brain tumors. She is a survivor of one. Online communication tools are vital links for patients, she says, providing access to the caregiver (via electronic mail) or to virtual health communities (through email-based support groups). When the number of participants in BRAINTMR hit 1,200, she declared it a success, albeit difficult to manage.
Legislative initiatives favoring the consumer have proliferated and the Internet has been center stage. The Department of Health and Human Services and the National Institutes of Health (NIH) have led the effort, making vast amounts of information available via the World Wide Web and the Internet, as well as more traditional modes of delivery. "This is a new era of enlightenment for medical consumers," says Dennis Rodriguez, co-chair of the World Wide Web coordinating committee at NIH, Bethesda, Md. NIH is systematically converting all printed health documents to Web versions, he says. The migration is about 30 percent complete.
First doctors, now patients
Other government initiatives have given consumers access to information once considered off-limits. Last June, the National Library of Medicine gave consumers access to MEDLINE (MEDlars onLINE), a rich bibliographic database originally developed for medical professionals. Since becoming available via the World Wide Web, MEDLINE has experienced a phenomenal increase in requests from non-academic, non-educational, and non-healthcare-related sources---that is, from average, ordinary health consumers. Patients are now walking into the physician’s office with MEDLINE search results, says Blackford Middleton, MD, and VP of clinical informatics at MedicaLogic, Inc., Hillsboro, Ore.
Almost all healthcare organizations and health plans have Web sites now. Progressive ones provide a wealth of information resources for members; others offer only glorified brochures, observes Brennan. "We have discovered," she says, "the need for mass communication expertise. It is not enough to scan health brochures for use on the Web. We must go beyond that."
Libraries, like the Web, are great equalizers--at least public libraries. But some medical libraries have open doors, too. These progressive institutions are in the minority now, but that’s changing, says Elaine Martin, assistant university librarian for health sciences at the University of Illinois, Chicago. She sees more university and hospital libraries opening their doors as they recognize the importance of serving their consumers. The tide is turning for the professional medical librarian, as well. Martin reports that health professionals are beginning to recognize the librarian as a member of the care team and to refer patients seeking information to them. Another important development is a growing collaboration, as public libraries form tiered information networks with medical and university libraries.
Most electronic patient record systems on the market include some method of generating patient educational material. Middleton emphasizes the value of tailored and patient-specific guidelines, but acknowledges the problems with language. Non-English speaking patients, particularly those from small minority language groups, can’t use the materials. Some, semi-automated interpretive personal and phone services exist, he says, but are not an end in themselves
Even with all the digital information available, traditional printed material will probably continue be a keystone for patient and consumer information. Used in conjunction with health programs and other patient incentives, printed educational materials remains a valid tool for communicating with patients.
Some companies offering consumer informatics products
A.D.A.M. Software, Inc.
1600 Riveredge Parkway, Suite 800
Atlanta, Ga. 30328
American Health Information Management Association
919 N. Michigan Ave. Suite 1400
Chicago, IL 60611
2560 Ninth Street, Suite 220
Berkeley, Calif. 94710
Marshall Educational Health Solutions, Inc.
1176 Angela Ct. Suite 103
P.O. Box 1727
Minden, NV 89423
20500 NW Evergreen Parkway
Hillsboro, OR 97124
National Institutes of Health
Office of Communications
Building 1, Rm 344
31 Center Drive MSC0188
Bethesda, MD 20892-0188
National Library of Medicine (NLM)
8600 Rockville Pike
Bethesda, MD 20894
Newton Wellesley Primary Care Practices
Newton, Needham and Weston, Mass.
Object Products, Inc.
8441 Wayzata Blvd., Suite 105
Minneapolis, MN 55426
46 Prince Street
Rochester, NY 14607
Charlene Marietti is senior technology writer at Healthcare Informatics.