Introduction
Consumerism has seen a dramatic rise in the United States over the past decade. More recently, this movement has expanded into the area of health. The traditional role of the patient as the object of care, acquiescent to decisions made by the experts, is being challenged. Today, patients and families expect to be partners in care, evaluating with their caregivers the implications of diagnostic tests and the ramifications of treatment modalities, including cost and effectiveness.
The Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule grants specific rights to patients and family members regarding their health information. For example, patients must be made aware when their record is shared outside of pre-specified boundaries, and patients must be granted the ability to view their medical record and to correct information if that is warranted.
The internet has been a boon to healthcare consumerism. A Google search on any health topic wil typically return thousands of pages, varying greatly in relevance and quality, but nonetheless usually useful to the health information seeker. Caregivers visit with a ream of printouts related to their diagnosis or treatment, asking the physician or more to comments on the material’s relevance to their particular case. Links to diagnosis-specific support groups, the ability to communicate with family, friends, and healthcare providers about one’s health, and a variety of interactive resources for record-keeping, monitoring, and decision-making are also available.
Application Areas: Consumer Use of Computers for Health
Information Seeking
Information seeking about health matters is a common use of computers by patients and consumers. Information seekers declared that they use the Internet because it is fast, anonymous, and always available. By searching multiple sites and looking for commonality in the content, they are able to discern the accuracy of the information.
Sponsorship of static content sites varies widely Healthcare organizations may offer their communities a public Web site that includes health articles developed by their own professional experts, or licensed from vendors. A well-known example is Mayo Clinic, whose public site, mayoclinic.com, provides a wealth of health information and tools. For-profit entities such as pharmaceutical firms, drugstore chains and durable medical equipment vendors frequently sponsors public sites such as diabetes.com sponsored by GlaxoSmithKiline. Professional societies and foundations frequently sponsors public sites devoted to educating consumers about health matters that are their particular focus such as american-heart.org, sponsored by the American Heart Association, and lungusa.org, sponsored by the American Lung Association. The U.S government has developed several resources for consumers seeking health information such as healthfinder.gov sponsored by the Office of Disease Prevention and Health Promotion of the U.S. Department of health and Human Services; medlineplus.gov developed by National Library of Medicine and National Institutes of Health and medicare.gov sponsored by the Centers for Medicare and Medicaide Services (CMS) of the U.S. Department of Health and Human Services.
Communication and Support
Electronic mail continues to be the “killer app” of the Internet. Many e-mail users find it particularly useful for health-related matters. Online support groups can provide a indispensable, even life-saving resource to patient and families. Members of the group sometimes share information about the latest research, treatments, and clinical trials that may not be common knowledge.
Direct communication with one’s healthcare provider is high on the list of desired resources for most patents and families. The most frequently cited reasons for wishing this type of communication are to (a) get health reminders, (b) get personalized information after the doctor’s visit, (c) ask questions when a visit is not necessary, (d) make appointments, (e) renew prescriptions, and (f) get lab results.
Further along the spectrum are “e-visits”, structured interactions that enable patients to describe a problem in some detail, and receive advice from the healthcare provider, thus avoiding the time and expense of an in-person visit.
Personal Health Records
Many keep their own personal health records, both for themselves and for their family members. The structure of computer-based personal health under major headings such as allergies, problems drugs, procedures and so forth. Consumers can buy a personal health record application in any software store, loading the program onto their own computer, and storing their record there.
Bridging the gap between the professional’s record and the personal health record is the shared patient record; one in which both professional and patient contribute information.
Decision Support
A broad range of decision –support applications is available to the interested consumer. Some applications are straightforward decision trees that offer advice for follow-up depending on the information entered. The Comprehensive Health Enhancement Support System (CHESS) system also includes an array of support functions that includes decision-support tools, though it is not primarily a decision-support tool application.
Schwitzer provided a review of 5 decision-support applications, and noted that none of theme offered all four of what he considers to be key Web-enable features: (a) outcomes probability data tailored to the individual user, (b) multimedia presentations of patient interviews, (c) an interactive support network, and (d) free access over the Internet.
Disease Management
Technological support for joint patient-provider collaboration in disease management is a promising application area, though not yet widespread. Interactive voice response system has been used successfully to monitor patients with conditions such as obsessive-compulsive disease, hypertension, asthma and others.
There have been reports of reduced hospitalizations and reduced incidence of complications of chronic disease bt employing these technologies. At this time, these programs are used mainly by insurers and health plans, who see cost benefits by aggressively managing populations of patients with specific chronic conditions.
Issues in Consumer Computing for Health
Variability in Quality of Information Available to Consumers
Because there are no quality controls on the content of health information available on the Internet, health professionals have been concerned about the influence of unreliable information on consumer and patient behavior. Research shows, however, that the fears may be unfounded. Ferguson observed that although both health professionals and patients are concerned with the quality of information and patients available on the World Wide Web, patients are less so.
The Health on the Net Foundation (HON) has developed a set of principles and corresponding guidelines for developers of health information published on the Web. Those who follow the guidelines are encouraged to place the HON code seal on their web pages. A number of organizations have developed guidelines for health information seekers to use when evaluating the quality of materials they read. Some organizations now certify health sites, offering the consumer another level of confidence with the credibility of the site.
Lack of Security in Internet-based Transactions
There is a great demand from consumers to communicate with their healthcare providers online. Clinicians sometimes offer their patients the ability to communicate with them via open Internet e-mail. This poses several problems. For one thing, it is not uncommon for families to share a single e-mail address. Messages sent to the patient may be read by a family member, resulting in possible violation of privacy..
The preferred approach is to offer the patient or family caregiver a secure method of communication.
Uneven Accessibility Across Age, Ethnic, and Socioeconomic Groups: The Digital Divide
From the time that statistics were first gathered about Internet usage, it was apparent that Internet uses were not representative of the population at large. Although the demographics of Internet users are slowly changing, there persists what has become known as Digital Divide. This is a matter of concern to health providers and public health officials, because poorer, minority, and older populations have more health problems and are the very ones who cold benefit from Internet-based healthcare application. Healthy People 2010 has one of its overarching goals the elimination of health disparities among different segments of the population. One specific objective is to “Increase the proportion of households with access to the Internet at home.”
Educational and Cultural Barriers
Even among those who have Internet, factors such literacy, language preference and cultural background can be barriers to use of the Internet for health. It is generally accepted that persons with low literacy will also have low health literacy, because so much of medical terminology is dense and complex. Some vendors have developed consumer-friendly terminologies that map to medical terminologies to assist consumers with finding, understanding, and recording health-related material.
Physical and Cognitive Disabilities
Fox and Fallows found in 2002 that only 38% of persons with disabilities went online, compared with 58% of all American Of those, 20% said their disability makes using the Internet difficult.. Yet the Internet has enormous potential to assist the homebound and disabled.
Elderly users are even more specialized in their needs. Demiris and colleagues point out that diminished visual acuity and color discrimination, memory deficits, and increased need for processing time impose specific requirements on the design of applications.
Impact on Relationship with Healthcare Providers
Just as computers have revolutionized consumers’ and patients’ abilities to care for themselves, so have they affected patient-clinician relationships. The knowledgeable patient is no longer so dependent on the clinician’s advice, and, in fact, may challenge it. The empowered patient wishes to collaborate in the clinician’s care, and wants to be treated respectfully as a full-fledged partner in achieving mutually agreed-on goals. Some clinicians welcome the new partnership, believing tat better quality; lower-cost care will result. Others have a more difficult time adjusting to the power shift, and would rather not deal with patients who will not accept their recommendations at face value. Ferguson calls this disconnect “The Gap,” and believes that providers who cannot accommodate to the new paradigm will lose patients to those who can.
The Nurse Informatician’s Role in Consumer and Patient Computing
Areas of Nursing Expertise that can be Applied to Consumer/Patient Computing
Informaticians who are nurses bring unique skills to the area of consumer informatics by virtue of their professional education in nursing. Among these skills:
Deep expertise in patient education
Nurse informaticians can combine their expertise in patient education with their informatics skills to design content and applications that are effective for knowledge and skills needed to maintain health.
Cultural Diversity in the workforce and a strong ethic of cultural sensitivity
The nursing workforce itself is more ethnically and culturally diverse that most professions.
Strong background in both patient- and community-focused research
Nurses have a long tradition of patient-focused research, a strength that can be applied to the many areas of consumer and patient computing that are begging for research.
Strong heritage of patient advocacy and patient empowerment
Encouraging and enabling the patient to use technology to achieve that self-sufficiency is a natural extension of nursing care.
Special Considerations in Designing Applications for Patients and Consumers
Nurse Informaticians have designed applications for health professionals to use should be aware of the special considerations required in applications for consumers and patients. These special considerations include:
Lay versus professional nomenclature
Lay terms must be substituted whenever possible. Professional nomenclature is so ingrained in most clinicians that they often are not even aware that they are using language that is foreign to the consumer.
General literacy and health literacy
All reader, no matter what their educational level, appreciates material that is written clearly and in lain language.
Computer literacy and digital divide
Nurses who have implemented computer literate realize the importance of system design that emphasizes ease of use and easily available help functions.
Special needs of the elderly
Good sources for learning more about the needs of elderly users can be found at www.aarp.org/olderwiserwired. The National Institute on Aging the National Library of Medicine have jointly published “Making Your Website Senor Friendly,” a checklist with research-based guidelines that can be downloaded from http://usability.gov/checklistpdf.
Accessibility to persons with disabilities
The federal government has mandated accessibility for all government-sponsored Web sites under Section 508 of the Rehabilitation Act Amendments of 1998.
User-centered design
Focus groups, iterative testing ad validation with target users, and a multidisciplinary approach that may include representatives of the target population, are central to the process.
Some Research Areas Related to Consumer and Patient Computing
The “e-health revolution” is a relatively new phenomenon.
Ferguson (2002) refers to the “terra incognita of online consumer health.” He recommends, among other topics, investigation the dynamics of online support communities sometimes contribute to formal medical research. Gustafson (2004) advocates for various levels of evaluation studies of e-health systems based on the type of service offered. Schwitzer (2002) believes that there has been in adequate evaluation of the merits of one type of decision support over another in multimedia decision-support application. Greenberg, D’Andrea and Lorence (2004) advocate research into search technologies to help consumers to search ore effectively and to evaluate the quality of what they find. Kaplan and Brennan noted 3 particular areas of research: (1) defining whether the user is a patient, consumer or client and whether the definition s make a difference and whether the term might change with circumstances; (2) determining how the roles of the patient and healthcare providers are changing and (3) examining what the term empowerment means.
Conclusion
Clearly, the field of consumer health informatics though young, is broad and multifaceted. It does not belong to one discipline.
Consumerism has seen a dramatic rise in the United States over the past decade. More recently, this movement has expanded into the area of health. The traditional role of the patient as the object of care, acquiescent to decisions made by the experts, is being challenged. Today, patients and families expect to be partners in care, evaluating with their caregivers the implications of diagnostic tests and the ramifications of treatment modalities, including cost and effectiveness.
The Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule grants specific rights to patients and family members regarding their health information. For example, patients must be made aware when their record is shared outside of pre-specified boundaries, and patients must be granted the ability to view their medical record and to correct information if that is warranted.
The internet has been a boon to healthcare consumerism. A Google search on any health topic wil typically return thousands of pages, varying greatly in relevance and quality, but nonetheless usually useful to the health information seeker. Caregivers visit with a ream of printouts related to their diagnosis or treatment, asking the physician or more to comments on the material’s relevance to their particular case. Links to diagnosis-specific support groups, the ability to communicate with family, friends, and healthcare providers about one’s health, and a variety of interactive resources for record-keeping, monitoring, and decision-making are also available.
Application Areas: Consumer Use of Computers for Health
Information Seeking
Information seeking about health matters is a common use of computers by patients and consumers. Information seekers declared that they use the Internet because it is fast, anonymous, and always available. By searching multiple sites and looking for commonality in the content, they are able to discern the accuracy of the information.
Sponsorship of static content sites varies widely Healthcare organizations may offer their communities a public Web site that includes health articles developed by their own professional experts, or licensed from vendors. A well-known example is Mayo Clinic, whose public site, mayoclinic.com, provides a wealth of health information and tools. For-profit entities such as pharmaceutical firms, drugstore chains and durable medical equipment vendors frequently sponsors public sites such as diabetes.com sponsored by GlaxoSmithKiline. Professional societies and foundations frequently sponsors public sites devoted to educating consumers about health matters that are their particular focus such as american-heart.org, sponsored by the American Heart Association, and lungusa.org, sponsored by the American Lung Association. The U.S government has developed several resources for consumers seeking health information such as healthfinder.gov sponsored by the Office of Disease Prevention and Health Promotion of the U.S. Department of health and Human Services; medlineplus.gov developed by National Library of Medicine and National Institutes of Health and medicare.gov sponsored by the Centers for Medicare and Medicaide Services (CMS) of the U.S. Department of Health and Human Services.
Communication and Support
Electronic mail continues to be the “killer app” of the Internet. Many e-mail users find it particularly useful for health-related matters. Online support groups can provide a indispensable, even life-saving resource to patient and families. Members of the group sometimes share information about the latest research, treatments, and clinical trials that may not be common knowledge.
Direct communication with one’s healthcare provider is high on the list of desired resources for most patents and families. The most frequently cited reasons for wishing this type of communication are to (a) get health reminders, (b) get personalized information after the doctor’s visit, (c) ask questions when a visit is not necessary, (d) make appointments, (e) renew prescriptions, and (f) get lab results.
Further along the spectrum are “e-visits”, structured interactions that enable patients to describe a problem in some detail, and receive advice from the healthcare provider, thus avoiding the time and expense of an in-person visit.
Personal Health Records
Many keep their own personal health records, both for themselves and for their family members. The structure of computer-based personal health under major headings such as allergies, problems drugs, procedures and so forth. Consumers can buy a personal health record application in any software store, loading the program onto their own computer, and storing their record there.
Bridging the gap between the professional’s record and the personal health record is the shared patient record; one in which both professional and patient contribute information.
Decision Support
A broad range of decision –support applications is available to the interested consumer. Some applications are straightforward decision trees that offer advice for follow-up depending on the information entered. The Comprehensive Health Enhancement Support System (CHESS) system also includes an array of support functions that includes decision-support tools, though it is not primarily a decision-support tool application.
Schwitzer provided a review of 5 decision-support applications, and noted that none of theme offered all four of what he considers to be key Web-enable features: (a) outcomes probability data tailored to the individual user, (b) multimedia presentations of patient interviews, (c) an interactive support network, and (d) free access over the Internet.
Disease Management
Technological support for joint patient-provider collaboration in disease management is a promising application area, though not yet widespread. Interactive voice response system has been used successfully to monitor patients with conditions such as obsessive-compulsive disease, hypertension, asthma and others.
There have been reports of reduced hospitalizations and reduced incidence of complications of chronic disease bt employing these technologies. At this time, these programs are used mainly by insurers and health plans, who see cost benefits by aggressively managing populations of patients with specific chronic conditions.
Issues in Consumer Computing for Health
Variability in Quality of Information Available to Consumers
Because there are no quality controls on the content of health information available on the Internet, health professionals have been concerned about the influence of unreliable information on consumer and patient behavior. Research shows, however, that the fears may be unfounded. Ferguson observed that although both health professionals and patients are concerned with the quality of information and patients available on the World Wide Web, patients are less so.
The Health on the Net Foundation (HON) has developed a set of principles and corresponding guidelines for developers of health information published on the Web. Those who follow the guidelines are encouraged to place the HON code seal on their web pages. A number of organizations have developed guidelines for health information seekers to use when evaluating the quality of materials they read. Some organizations now certify health sites, offering the consumer another level of confidence with the credibility of the site.
Lack of Security in Internet-based Transactions
There is a great demand from consumers to communicate with their healthcare providers online. Clinicians sometimes offer their patients the ability to communicate with them via open Internet e-mail. This poses several problems. For one thing, it is not uncommon for families to share a single e-mail address. Messages sent to the patient may be read by a family member, resulting in possible violation of privacy..
The preferred approach is to offer the patient or family caregiver a secure method of communication.
Uneven Accessibility Across Age, Ethnic, and Socioeconomic Groups: The Digital Divide
From the time that statistics were first gathered about Internet usage, it was apparent that Internet uses were not representative of the population at large. Although the demographics of Internet users are slowly changing, there persists what has become known as Digital Divide. This is a matter of concern to health providers and public health officials, because poorer, minority, and older populations have more health problems and are the very ones who cold benefit from Internet-based healthcare application. Healthy People 2010 has one of its overarching goals the elimination of health disparities among different segments of the population. One specific objective is to “Increase the proportion of households with access to the Internet at home.”
Educational and Cultural Barriers
Even among those who have Internet, factors such literacy, language preference and cultural background can be barriers to use of the Internet for health. It is generally accepted that persons with low literacy will also have low health literacy, because so much of medical terminology is dense and complex. Some vendors have developed consumer-friendly terminologies that map to medical terminologies to assist consumers with finding, understanding, and recording health-related material.
Physical and Cognitive Disabilities
Fox and Fallows found in 2002 that only 38% of persons with disabilities went online, compared with 58% of all American Of those, 20% said their disability makes using the Internet difficult.. Yet the Internet has enormous potential to assist the homebound and disabled.
Elderly users are even more specialized in their needs. Demiris and colleagues point out that diminished visual acuity and color discrimination, memory deficits, and increased need for processing time impose specific requirements on the design of applications.
Impact on Relationship with Healthcare Providers
Just as computers have revolutionized consumers’ and patients’ abilities to care for themselves, so have they affected patient-clinician relationships. The knowledgeable patient is no longer so dependent on the clinician’s advice, and, in fact, may challenge it. The empowered patient wishes to collaborate in the clinician’s care, and wants to be treated respectfully as a full-fledged partner in achieving mutually agreed-on goals. Some clinicians welcome the new partnership, believing tat better quality; lower-cost care will result. Others have a more difficult time adjusting to the power shift, and would rather not deal with patients who will not accept their recommendations at face value. Ferguson calls this disconnect “The Gap,” and believes that providers who cannot accommodate to the new paradigm will lose patients to those who can.
The Nurse Informatician’s Role in Consumer and Patient Computing
Areas of Nursing Expertise that can be Applied to Consumer/Patient Computing
Informaticians who are nurses bring unique skills to the area of consumer informatics by virtue of their professional education in nursing. Among these skills:
Deep expertise in patient education
Nurse informaticians can combine their expertise in patient education with their informatics skills to design content and applications that are effective for knowledge and skills needed to maintain health.
Cultural Diversity in the workforce and a strong ethic of cultural sensitivity
The nursing workforce itself is more ethnically and culturally diverse that most professions.
Strong background in both patient- and community-focused research
Nurses have a long tradition of patient-focused research, a strength that can be applied to the many areas of consumer and patient computing that are begging for research.
Strong heritage of patient advocacy and patient empowerment
Encouraging and enabling the patient to use technology to achieve that self-sufficiency is a natural extension of nursing care.
Special Considerations in Designing Applications for Patients and Consumers
Nurse Informaticians have designed applications for health professionals to use should be aware of the special considerations required in applications for consumers and patients. These special considerations include:
Lay versus professional nomenclature
Lay terms must be substituted whenever possible. Professional nomenclature is so ingrained in most clinicians that they often are not even aware that they are using language that is foreign to the consumer.
General literacy and health literacy
All reader, no matter what their educational level, appreciates material that is written clearly and in lain language.
Computer literacy and digital divide
Nurses who have implemented computer literate realize the importance of system design that emphasizes ease of use and easily available help functions.
Special needs of the elderly
Good sources for learning more about the needs of elderly users can be found at www.aarp.org/olderwiserwired. The National Institute on Aging the National Library of Medicine have jointly published “Making Your Website Senor Friendly,” a checklist with research-based guidelines that can be downloaded from http://usability.gov/checklistpdf.
Accessibility to persons with disabilities
The federal government has mandated accessibility for all government-sponsored Web sites under Section 508 of the Rehabilitation Act Amendments of 1998.
User-centered design
Focus groups, iterative testing ad validation with target users, and a multidisciplinary approach that may include representatives of the target population, are central to the process.
Some Research Areas Related to Consumer and Patient Computing
The “e-health revolution” is a relatively new phenomenon.
Ferguson (2002) refers to the “terra incognita of online consumer health.” He recommends, among other topics, investigation the dynamics of online support communities sometimes contribute to formal medical research. Gustafson (2004) advocates for various levels of evaluation studies of e-health systems based on the type of service offered. Schwitzer (2002) believes that there has been in adequate evaluation of the merits of one type of decision support over another in multimedia decision-support application. Greenberg, D’Andrea and Lorence (2004) advocate research into search technologies to help consumers to search ore effectively and to evaluate the quality of what they find. Kaplan and Brennan noted 3 particular areas of research: (1) defining whether the user is a patient, consumer or client and whether the definition s make a difference and whether the term might change with circumstances; (2) determining how the roles of the patient and healthcare providers are changing and (3) examining what the term empowerment means.
Conclusion
Clearly, the field of consumer health informatics though young, is broad and multifaceted. It does not belong to one discipline.
