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Consumer and Patient Use of Computers for Health

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 ith their caregivers the implications of diagnostic tests and the ramifications of treatment modalities, including cost and effectiveness. The !ealth "nsurance #ortability and $ccountability $ct %!"#$$& #rivacy 'ule grants specific rights to patients and family members regarding their health information. (or example, patients must be made a are hen their record is shared outside of pre)specified boundaries, and patients must be granted the ability to vie their medical record and to correct information if that is arranted. The internet has been a boon to healthcare consumerism. $ *oogle search on any health topic il typically return thousands of pages, varying greatly in relevance and quality, but nonetheless usually useful to the health information see+er. Caregivers visit ith a ream of printouts related to their diagnosis or treatment, as+ing the physician or more to comments on the material,s relevance to their particular case. -in+s to diagnosis)specific support groups, the ability to communicate ith family, friends, and healthcare providers about one,s health, and a variety of interactive resources for record)+eeping, monitoring, and decision) ma+ing are also available. Application Areas: Consumer Use of Computers for Health Information Seeking "nformation see+ing about health matters is a common use of computers by patients and consumers. "nformation see+ers declared that they use the "nternet because it is fast, anonymous, and al ays available. .y searching multiple sites and loo+ing for commonality in the content, they are able to discern the accuracy of the information. Sponsorship of static content sites varies idely !ealthcare organi/ations may offer their communities a public 0eb site that includes health articles developed by their o n professional experts, or licensed from vendors. $ ell)+no n example is Mayo Clinic, hose public site, mayoclinic.com, provides a ealth of health information and tools. (or)profit entities such as pharmaceutical firms, drugstore chains and

durable medical equipment vendors frequently sponsors public sites such as diabetes.com sponsored by *laxoSmith1iline. #rofessional 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 $merican !eart $ssociation, and lungusa.org, sponsored by the $merican -ung $ssociation. The U.S government has developed several resources for consumers see+ing health information such as healthfinder.gov sponsored by the 2ffice of 3isease #revention and !ealth #romotion of the U.S. 3epartment of health and !uman Services4 medlineplus.gov developed by 5ational -ibrary of Medicine and 5ational "nstitutes of !ealth and medicare.gov sponsored by the Centers for Medicare and Medicaide Services %CMS& of the U.S. 3epartment of !ealth and !uman Services. Communication and Support 6lectronic mail continues to be the 7+iller app8 of the "nternet. Many e)mail users find it particularly useful for health)related matters. 2nline 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 +no ledge. 3irect communication ith one,s healthcare provider is high on the list of desired resources for most patents and families. The most frequently cited reasons for ishing this type of communication are to %a& get health reminders, %b& get personali/ed information after the doctor,s visit, %c& as+ questions hen a visit is not necessary, %d& ma+e appointments, %e& rene prescriptions, and %f& get lab results. (urther along the spectrum are 7e)visits8, 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 +eep their o n 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 soft are store, loading the program onto their o n computer, and storing their record there. .ridging the gap bet een the professional,s record and the personal health record is the shared patient record4 one in hich both professional and patient contribute information. Decision Support

$ broad range of decision 9support applications is available to the interested consumer. Some applications are straightfor ard decision trees that offer advice for follo )up depending on the information entered. The Comprehensive !ealth 6nhancement Support System %C!6SS& system also includes an array of support functions that includes decision)support tools, though it is not primarily a decision) support tool application. Sch it/er provided a revie of : decision)support applications, and noted that none of theme offered all four of hat he considers to be +ey 0eb)enable features; %a& outcomes probability data tailored to the individual user, %b& multimedia presentations of patient intervie s, %c& an interactive support net or+, and %d& free access over the "nternet. Disease Management Technological support for joint patient)provider collaboration in disease management is a promising application area, though not yet idespread. "nteractive voice response system has been used successfully to monitor patients ith conditions such as obsessive)compulsive disease, hypertension, asthma and others. There have been reports of reduced hospitali/ations and reduced incidence of complications of chronic disease bt employing these technologies. $t this time, these programs are used mainly by insurers and health plans, ho see cost benefits by aggressively managing populations of patients ith specific chronic conditions.

Issues in Consumer Computing for Health Variability in uality of Information !"ailable to Consumers

.ecause there are no quality controls on the content of health information available on the "nternet, health professionals have been concerned about the influence of unreliable information on consumer and patient behavior. 'esearch sho s, ho ever, that the fears may be unfounded. (erguson observed that although both health professionals and patients are concerned ith the quality of information and patients available on the 0orld 0ide 0eb, patients are less so. The !ealth on the 5et (oundation %!25& has developed a set of principles and corresponding guidelines for developers of health information published on the 0eb. Those ho follo the guidelines are encouraged to place the !25 code seal on their eb pages. $ number of organi/ations have developed guidelines for health information see+ers to use hen evaluating the quality of materials they read.

Some organi/ations no certify health sites, offering the consumer another level of confidence ith the credibility of the site. #ack of Security in Internet$based %ransactions There is a great demand from consumers to communicate ith their healthcare providers online. Clinicians sometimes offer their patients the ability to communicate ith them via open "nternet e)mail. This poses several problems. (or 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. Une"en !ccessibility !cross !ge& 'thnic& and Socioeconomic (roups) %he Digital Di"ide (rom the time that statistics ere first gathered about "nternet usage, it as apparent that "nternet uses ere not representative of the population at large. $lthough the demographics of "nternet users are slo ly changing, there persists hat has become +no n as 3igital 3ivide. 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 ho cold benefit from "nternet)based healthcare application. !ealthy #eople <=>= has one of its overarching goals the elimination of health disparities among different segments of the population. 2ne specific objective is to 7"ncrease the proportion of households ith access to the "nternet at home.8 'ducational and Cultural *arriers 6ven among those ho have "nternet, factors such literacy, language preference and cultural bac+ground can be barriers to use of the "nternet for health. "t is generally accepted that persons ith lo literacy ill also have lo 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 ith finding, understanding, and recording health)related material. Physical and Cogniti"e Disabilities (ox and (allo s found in <==< that only ?@A of persons ith disabilities ent online, compared ith :@A of all $merican 2f those, <=A said their disability ma+es using the "nternet difficult.. Bet the "nternet has enormous potential to assist the

homebound and disabled. 6lderly users are even more speciali/ed in their needs. 3emiris 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 +ith Healthcare Pro"iders Cust as computers have revolutioni/ed consumers, and patients, abilities to care for themselves, so have they affected patient)clinician relationships. The +no ledgeable patient is no longer so dependent on the clinician,s advice, and, in fact, may challenge it. The empo ered patient ishes to collaborate in the clinician,s care, and ants to be treated respectfully as a full)fledged partner in achieving mutually agreed)on goals. Some clinicians elcome the ne partnership, believing tat better quality4 lo er)cost care ill result. 2thers have a more difficult time adjusting to the po er shift, and ould rather not deal ith patients ho ill not accept their recommendations at face value. (erguson calls this disconnect 7The *ap,8 and believes that providers ho cannot accommodate to the ne paradigm ill lose patients to those ho can. The Nurse Informaticians Role in Consumer and Patient Computing !reas of ,ursing '-pertise that can be !pplied to Consumer.Patient Computing "nformaticians ho are nurses bring unique s+ills to the area of consumer informatics by virtue of their professional education in nursing. $mong these s+ills; Deep e-pertise in patient education 5urse informaticians can combine their expertise in patient education ith their informatics s+ills to design content and applications that are effective for +no ledge and s+ills needed to maintain health. Cultural Di"ersity in the +orkforce and a strong ethic of cultural sensiti"ity The nursing or+force itself is more ethnically and culturally diverse that most professions. Strong background in both patient$ and community$focused research 5urses 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 ad"ocacy and patient empo+erment 6ncouraging and enabling the patient to use technology to achieve that self) sufficiency is a natural extension of nursing care. Special Considerations in Designing !pplications for Patients and Consumers 5urse "nformaticians have designed applications for health professionals to use should be a are of the special considerations required in applications for consumers and patients. These special considerations include; #ay "ersus professional nomenclature -ay terms must be substituted henever possible. #rofessional nomenclature is so ingrained in most clinicians that they often are not even a are that they are using language that is foreign to the consumer. (eneral literacy and health literacy $ll reader, no matter hat their educational level, appreciates material that is ritten clearly and in lain language. Computer literacy and digital di"ide 5urses ho have implemented computer literate reali/e the importance of system design that emphasi/es ease of use and easily available help functions. Special needs of the elderly *ood sources for learning more about the needs of elderly users can be found at www.aarp.org/olderwiserwired. The 5ational "nstitute on $ging the 5ational -ibrary of Medicine have jointly published 7Ma+ing Bour 0ebsite Senor (riendly,8 a chec+list ith research)based guidelines that can be do nloaded from http;DDusability.govDchec+listpdf. !ccessibility to persons +ith disabilities The federal government has mandated accessibility for all government)sponsored 0eb sites under Section :=@ of the 'ehabilitation $ct $mendments of >EE@. User$centered design (ocus groups, iterative testing ad validation ith 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 7e)health revolution8 is a relatively ne phenomenon.

(erguson %<==<& refers to the 7terra incognita of online consumer health.8 !e recommends, among other topics, investigation the dynamics of online support communities sometimes contribute to formal medical research. *ustafson %<==F& advocates for various levels of evaluation studies of e)health systems based on the type of service offered. Sch it/er %<==<& believes that there has been in adequate evaluation of the merits of one type of decision support over another in multimedia decision)support application. *reenberg, 3,$ndrea and -orence %<==F& advocate research into search technologies to help consumers to search ore effectively and to evaluate the quality of hat they find. 1aplan and .rennan noted ? particular areas of research; %>& defining hether the user is a patient, consumer or client and hether the definition s ma+e a difference and hether the term might change ith circumstances4 %<& determining ho the roles of the patient and healthcare providers are changing and %?& examining hat the term empo erment means.