in an integrated EHR, discharge summary data are collected and upgraded throughout the patient stay and available for final review and completion prior to discharge
clinical systems offer a variety of “data snapshots” that provide customized views that facilitate rapid and timely evaluation of key relevant patient information.
Outcome Variance Reports
unexplained variances are tracked by the system and available for management reporting
may be used to identify “outfliers", compare performance across providers and when appropriate, update the pathway to reflect more effective practices
Standard Terminology Provided with Clinical Applications
Expectations of the Marketplace
HCOs expect their EHR vendor to deliver a standards-based set of nursing content for charting and planning care
Systematized Nomenclature of Medicine (SNOMED)- standard reference for terminology
Responding to this market demand, most HCIT vendors now deliver at least a basic starter set of terminology
Consumer and Patient Use of Computers for Health
Abueva, Michelle Louise P.
Consumerism more recently has expanded into the arena of health. Consumers of health services (patients, families, and family caregivers) are educating themselves on all aspects of health, wellness, and disease. The traditional role of the patient as the object of care, acquiescent to decisions made by the experts, is being challenged (Solucient, 2003; Ferguson, 2002c). 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 (Solucient, 2003; Oster et al., 2000; Fox and Rainie, 2000).
The Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule grants specific rights to patients and family members regarding their health information.
The Internet has been a boon to healthcare consumerism.
Static content pages are only one type of health-related resources on the Web. Links to diagnose-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
1. Information Seeking
Information seeking about health matters is a common use of computers by patients and consumers. By searching multiple sites and looking for commonality in the content, they are able to discern the accuracy of the information. Topics most frequently searched on are diseases, treatments, and diet or nutritional information (Fox and Fallows, 2003).
Healthcare organizations include:
Mayo Clinic, mayoclinic.com provides a wealth of health information and tools.
diabetes.com sponsored by GlaxoSmithKline is a for-profit entity of pharmaceutical firms.
Professional societies that educate consumers about health matters: (1) american-heart.org, sponsored by the American Heart Association, and (2) lungusa.org, sponsored by the American Lung Association.
Healthvision, Inc and HealthGate Data Corp. are two companies that allow branding or co-branding.
2. Communication and Support
Electronic mail continues to be the “killer app” of the Internet. It is very useful in communicating and in health-related matters.
Online support groups can provide an indispensable, even life-saving resource to patients and families.
Technical aids such as screen readers for the visually impaired can even assist those who have physical disabilities to use the computer for online support.
Direct communication with one’s healthcare provider is high on the list of desired resources for most patients 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 (HarrisInteractive, 2000, 2002).
3. Personal Health records
Many keep their own personal health records, both for themselves and for their family members. The structure is computer-based personal health records varies widely, from those simply collect text under major headings such as allergies, problems, drugs, procedures, and the like, to those that encode users’ entries with ICD9 and CPT codes, or even with the broad range of terms found in the National Library of Medicine’s Unified Medical Language System.
Personal health record application for record-keeping:
RecordSmart supplied by MyHealth123
ASTM International Standard (www.astm.org)
Caregroup’s PatientSite (www.caregroup.com) is a web-based application that permits patients to view their medical record, and to record information online in a separate section of the record.
Palo Alto Medical Foundation (PAMFOnline) provides an application that permits secure communication with the physician’s staff and patients can view components of their medical record and obtain their health summary.
In a small study at Columbia University, Cimino and colleagues concluded that “use of the system enhanced the patient’s understanding of their conditions and improved their communication with their physicians,” with no reported adverse effects (Cimino, Patel, and Kushniruk, 2002).
4. Decision Support
A broad range of decision-support applications is available to the interested consumer. Some incorporate multimedia presentations, statistics-based presentations and offer prognostic information based on personal information entered. Schwitzer provided a review of five decision-support applications and four Web-enabled features:
Outcomes probability data tailored to individual user
Multimedia presentations of patient interviews
An interactive support network
Free access over the internet
5. Disease Management
Technological support for joint patient-provider collaboration in disease management is a promising application area, though not yet widespread. Patients or family caregivers are enrolled in a program and participate using one of a number of technologies.
Interactive voice response systems have been used successfully to monitor patient with conditions such as hypertension, asthma, and others.
Live videoconferencing with nurses, use of devices to record and electronically transmit fingerstick glucose and blood pressure are being used with the intervention group.
Some websites like www.diabetes-self-mgmt.com offer the user a disease self-managemnt program, providing educational materials, tools, links, and ability to record disease-specific parameters.
Issues in Consumer Computing for Health
1. Variability in Quality of Information Available to Consumers
Researchers for the Pew Internet and American Life project found that consumers used a variety of tactics to discern the veracity of materials. The most common one was to see whether the same information appeared on more than one site. Guidelines have been published to assist both the developer of health-related materials, and the health information seeker.
The Health On the Net Foundation (HON) has developed a set of principles for developers of health information published on the web: authority, complementarity, confidentiality, attribution, justifiability, transparency of authorship, transparency of sponsorship, and honesty in advertising and editorial policy (HON, 1997).
2. Lack of Security in Internet-based Transactions
There is a great demand from consumers to communicate with their healthcare providers online. For one thing, it is not uncommon for families to share a single e-mail address. Messages sent to a patient may be read by family members, resulting in possible violation of privacy. Also, open internet transactions are subject to interception.
The preferred approach is to offer the patient or family caregiver a secure method of communication. This may be accomplished by using a message encrypting service, or by offering the patient a password-protected secure site, where all transactions are encrypted.
3. Uneven Accessibility Across Age, Ethnic, and Socioeconomic Groups: The Digital Divide
Although the demographics of internet users are slowly changing, there persists what has become known as the Digital Divide. This is a matter of concern of health providers and public health officials, because poorer, minority, and older populations have more health problems, and are the very ones who could benefit from internet-based healthcare applications.
4. Educational and Cultural Barriers
Even among those who have access to the internet, factors such as literacy, language preference, and cultural background can be barriers to use of the internet for health.
5. Physical and Cognitive Disabilities
Elderly users are even more specialized in their needs. In a review design considerations for elderly users, 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.
6. Impact on Relationship with Healthcare Providers
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-pledged partner in achieving mutually agreed-on goals.
Online support groups provide consolation, comfort, hope and empathetic human contact – hallmarks of the care that any good nurse would provide. These may provide knowledge of disease processes, treatments and clinical trials.
Kaplan and Brennan (2001) advocate for a new, three-way partnership among patient, provider and technology. This partnership should be patient-centered.
7. The Nurse Informatician’s Role in Consumer and Patient Computing
a. Scope and Standards of Nursing Informatics
The most recent edition of the American Nurses Association Scope and Practice of Nursing Informatics Practice (ANA, 2001) makes this explicit:
Nursing informatics facilitates the integration of data, information, and knowledge to support patients, nurses and other providers in their decision-making in all roles and settings.
b. Areas of Nursing Expertise that can be Applied to Consumer/ Patient Computing
Nurse Informaticians bring unique skills to the consumer informatics arena by virtue of their professional education in nursing:
Deep expertise in patient education. A core competency of nursing professionals is patient education. It must have design content and applications that are effective for imparting knowledge and skills needed to maintain health and manage acute and chronic conditions. The design content must be interactive, effective, and sensitive to patient’s literacy, language, and cultural needs.
Cultural diversity in the workforce and a strong ethic of cultural sensitivity. Cultural sensitivity is highly valued in nursing education and practice. This background serves nurse informaticians well in producing applications and materials that are culturally appropriate.
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. At the same time, they are very comfortable in the areas of implementing and evaluating interventions.
Strong heritage of patient advocacy and patient empowerment. Nurses have always had a central goal to assist each patient to achieve as much self-sufficiency as possible. A natural extension of nursing care is encouraging and enabling the patient to use technology to achieve self-sufficiency.
c. Special Considerations in Designing Applications for Patients and Consumers
These special considerations include:
Lay versus professional nomenclature. Interactive applications, forms, and static content designed for patients and consumers must be scoured for professional terms. Lay terms must be substituted whenever possible. The UMLS has many consumer-friendly synonyms for medical terms. http://umlsks.nlm.nih.gov/kss/servlet/Turvine/template/admin,user,KSS_login.vm.
General literacy and health literacy. All readers, no matter what their educational level, appreciate material that is written clearly and in plain language. The Harvard School of Public Health’s National Center for the Study of Adult Learning and Literacy Web site (www.hsph.hardard.edu/healthliteracy//index.html) has a wealth of resources, including annotated bibliography and a page that lists resources for designing web pages.
Computer literacy and the digital divide. Nurses who have implemented health-related systems to persons who are not computer literate realize the importance of system design that emphasizes ease of use and easily available help functions. Schneiderman (2003) advocates for “universal usability” with principles that foster a better user experience for all persons. Periodic newsletters online: Jakob Nielsen’s Alertbox www.useit.com and Jared Spool’s usability articles http://www.uie.com/uietips.htm.
Special needs of the elderly (www.aarp.org/olderwiserwired). The National Institute on Aging and the National Library of Medicine have jointly published “Making Your Website Senior Friendly,” a checklist with research-based guidelines that can be downloaded from http://usability.gov/checklist.pdf. The Center for Medicare Education has published a document entitled “Creating Senior-Friendly Web Sites”
Accessibility to persons with disabilities. The World Wide Web Consortium’s Web Accessibility Initiative (W3C/ WAI) is an international effort to establish guidelines and promote technologies to increase accessibility of the WWW to persons with physical and cognitive impairments. Guidelines: http://www.w3.org/WAI
User-centered design. The patient’s and consumer’s view of the world will be highly influenced by age, by health and computer literacy, by health status, by socioeconomic status, and by language and culture. Focus groups, iterative testing and validation with target users, and a multidisciplinary approach that may include representatives of the target population, are central to the process. Chambers and colleagues describe an exemplary process that involved elderly users from 5 European countries to design a multimedia telehealth application for elderly caregivers.
Some Research Areas Related to Consumer and Patient Computing
The “e-health revolution” is a relatively new phenomenon, and every area could be a focus for in-depth research.
a. Ferguson (2002c)
Refers to the “terra incognita of online consumer health”.
He recommends, among other topics, investigation the dynamics of online support communities, how their members operate, what benefits they provide to participants, and how these communities sometimes contribute to formal medical research.
He also advocates ethnographic examination of doctor online communication, examining the evolution of the doctor-patient relationship over a period of time.
For example, beyond patient satisfaction, does use of online communication contribute to patient outcomes, safety, or to patient cooperation with treatment regimen?
b. Gustafson (2004)
He advocates for various levels of evaluation studies of e-health systems based on the type of service offered.
Services for patients who are in serious crisis situations demand higher standards of acceptability, usability, and veracity, and should be evaluated for such before implementation.
c. Schwitzer (2002)
He believes that there has been inadequate evaluation of the merits of one type of decision support over another in multimedia decision-support applications.
Are streaming video stories more effective than tailored prognostic information? Are moderated discussion groups more effective than unmoderated ones?
d. Greenberg, D’ Andrea, and Lorence (2004)
They advocate research into search technologies to help consumers to search more effectively and to evaluate the quality of what they find. Among other priorities are methods that would allow searches to learn from user behavior.
e. Kaplan and Brennan (2001)
Noted 3 particular areas of research: (1) defining whether the user is a patient, consumer, or client and whether the definitions make a difference, and whether the term might change with circumstances; (2) determining how the roles of the patient/ client and healthcare providers are changing, and with what implications; and (3) examining what the term empowerment means, and what effect it might have on care
f. Additional areas for research include:
Development and evaluation of technologies to automatically translate health content and medical record data to meet the user’s native language and educational level
Effect of the empowered patient on patient-nurse dynamics
Effectiveness of various outreach methods to reach less educated, less wealthy, and more culturally diverse populations
Needs of underserved, less literate populations with respect to computer applications for health
Contribution of automatic push of health-related materials based on user’s expressed interests and recorded health problems to patient behavior and outcomes
Contribution of consumer-friendly terminology to retrieval of health information online
Unmet needs of patients and consumers with respect to online services
Contribution of access to online medical record to patient-provider communication, and to accuracy and completeness of medical record
Effects of highly tailored prognostic information based on user’s individual profile on patient decision-making
Influence of e-health technology on educational interventions in patient care
Ethical considerations in all aspects of e-health, including disclosure, informed consent, and providing full access to the medical record
Difference in effects of synchronous versus asynchronous communication with patient (video calls vs. secure messaging)
Decision Support for Consumers
Tu, Wan Yu Jelly
Patients concerns on quality health care are more focused on health promotion and disease management most especially on its treatment. Patients who are more satisfied with the treatment and care that they are receiving are those who are knowledgeable about their disease. Advertising campaigns are targeting consumers and encouraging them to screen for cancer and genetic effects using the mass media. A study of the effect of direct consumer drug advertising determined that 19% of the participants requested a prescription and an additional 35% asked their physician for additional information about a drug after seeing an advertisement. In allowing patients to participate effectively in their health management and disease treatment, it requires them enough knowledge and understanding of their health risks, treatment options and associated quality of life issues. The application of computer technologies can be very much helpful in enabling patients to actively participate in they management of the health care process and in making decisions regarding their health.
Health Related Decision-Making
Health related decision-making is not that easy due several reasons because you have to consider a lot of things and that you should be able to balance things accordingly. Not all people are knowledgeable and has the capacity to absorb all necessary information that they just learned which is relevant in making decision. You must all consider the persons involved, both the family and the healthcare delivery team, that in making the decision you must be able to meet their standards
Shared Decision-Making and Informed Choice
Patients being involved in making decision regarding their health and by giving them an option whether they are going to decide on their own or by their clinicians has helped them a lot. The informed consented also helps the patient in making a decision, because they are already aware of what’s going to happen and that if they are willing to take the risks but above all we must focus more on patients preferences.
In understanding the patient’s preference or the personal choice, it is based on the application of decision theory. Decision analysis and normative decision theory are the two main branches of decision theory; they both help make patients preference accessible for clinical decision-making.
Multi-attribute Utility Theory (MAUT) provides a way to establish a quantitative expression of an individuals values with the respect to a given set of alternatives, with preference for a given health outcome being expressed as a score on the weighted sum of the entities and their relative weights. It is also based on compensatory rules that allow for assessing trade offs among entities in such a way that a high value for one entity is compensated for by a low value in another entity.
In providing a framework for structuring a choice among a sequence of uncertain alternatives, decision analysis is combined with MAUT. Decision theoretic conceptualizations are the basis of most informatics tools to be able to elicit patient preferences.
Alternate Meanings of the Term “Preferences”
Different kinds of computer programs and utilities support decision-making; some consider preference as the final choice resulting from a decision or one option from many possible treatment options.
Computer Technology and Patient Decision-Making
Computer networks can insure the rapid, efficient transmission of patient preferences from the point of elicitation to the point of care and the facilitate patients exploration of preferences in the privacy of their homes or away from an anxiety-producing health encounter. The WWW, CD-ROMs and other computer tools can deliver informational interventions tailored to the needs, interests and display requirements of individuals
Decision-Making to Promote Health Behavior Change
Several models of health behavior change provide insight into individuals’ decision-making and motivation about changing and health lifestyle habits. More than a dozen theoretical models have been proposed for how to bring about change in health behaviors and lifestyles, but to change habits, it’s not enough to change a single act because all related decisions and reinforcements also must be examined and modified. Successful change requires study careful of reinforcements and an understanding of linkages among decisions so that all decisions support the same action.
It is proposed that to change the system that maintains a habit must (1) identify and examine the linkages among decisions, (2) measure and receive feedback about behaviors, (3) propose and try out new activities to improve these habits, and (4) build these decisions and behaviors into everyday routines that continue over a long period of time.