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This article was downloaded by: [York University Libraries] On: 12 August 2014, At: 21:47 Publisher: Routledge Informa Ltd Registered in England and Wales Registered Number: 1072954 Registered office: Mortimer House, 37-41 Mortimer Street, London W1T 3JH, UK Medical Reference Services Quarterly Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/wmrs20 Consumer Health Informatics- Integrating Patients, Providers, and Professionals Online Michele S. Klein-Fedyshin MSLS a a UPMC Shadyside, Health Sciences Library, UPMC Shadyside Health Sciences Library , 5230 Centre Avenue, Pittsburgh, PA, 15232, USA Published online: 12 Oct 2008. To cite this article: Michele S. Klein-Fedyshin MSLS (2002) Consumer Health Informatics-Integrating Patients, Providers, and Professionals Online, Medical Reference Services Quarterly, 21:3, 35-50, DOI: 10.1300/J115v21n03_03 To link to this article: http://dx.doi.org/10.1300/J115v21n03_03 PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content.

Consumer Health Informatics-Integrating Patients, Providers, and Professionals Online

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Page 1: Consumer Health Informatics-Integrating Patients, Providers, and Professionals Online

This article was downloaded by: [York University Libraries]On: 12 August 2014, At: 21:47Publisher: RoutledgeInforma Ltd Registered in England and Wales Registered Number: 1072954Registered office: Mortimer House, 37-41 Mortimer Street, London W1T 3JH,UK

Medical Reference ServicesQuarterlyPublication details, including instructions forauthors and subscription information:http://www.tandfonline.com/loi/wmrs20

Consumer Health Informatics-Integrating Patients, Providers,and Professionals OnlineMichele S. Klein-Fedyshin MSLS aa UPMC Shadyside, Health Sciences Library, UPMCShadyside Health Sciences Library , 5230 CentreAvenue, Pittsburgh, PA, 15232, USAPublished online: 12 Oct 2008.

To cite this article: Michele S. Klein-Fedyshin MSLS (2002) Consumer HealthInformatics-Integrating Patients, Providers, and Professionals Online, MedicalReference Services Quarterly, 21:3, 35-50, DOI: 10.1300/J115v21n03_03

To link to this article: http://dx.doi.org/10.1300/J115v21n03_03

PLEASE SCROLL DOWN FOR ARTICLE

Taylor & Francis makes every effort to ensure the accuracy of all theinformation (the “Content”) contained in the publications on our platform.However, Taylor & Francis, our agents, and our licensors make norepresentations or warranties whatsoever as to the accuracy, completeness,or suitability for any purpose of the Content. Any opinions and viewsexpressed in this publication are the opinions and views of the authors, andare not the views of or endorsed by Taylor & Francis. The accuracy of theContent should not be relied upon and should be independently verified withprimary sources of information. Taylor and Francis shall not be liable for anylosses, actions, claims, proceedings, demands, costs, expenses, damages,and other liabilities whatsoever or howsoever caused arising directly orindirectly in connection with, in relation to or arising out of the use of theContent.

Page 2: Consumer Health Informatics-Integrating Patients, Providers, and Professionals Online

This article may be used for research, teaching, and private study purposes.Any substantial or systematic reproduction, redistribution, reselling, loan,sub-licensing, systematic supply, or distribution in any form to anyone isexpressly forbidden. Terms & Conditions of access and use can be found athttp://www.tandfonline.com/page/terms-and-conditions

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Consumer Health Informatics–Integrating Patients, Providers,

and Professionals Online

Michele S. Klein-Fedyshin

ABSTRACT. Consumer Health Informatics (CHI) means different thingsto patients, health professionals, and health care systems. A broader per-spective on this new and rapidly developing field will enable us to under-stand and better apply its advances. This article provides an overview ofCHI discussing its evolution and driving forces, along with advanced ap-plications such as Personal Health Records, Internet transmission ofpersonal health data, clinical e-mail, online pharmacies, and shared deci-sion-making tools. Consumer Health Informatics will become integratedwith medical care, electronic medical records, and patient education toimpact the whole process and business of health care. [Article copies avail-able for a fee from The Haworth Document Delivery Service: 1-800-HAWORTH.E-mail address: <[email protected]> Website: <http://www.HaworthPress.com> 2002 by The Haworth Press, Inc. All rights reserved.]

KEYWORDS. Consumer health informatics, Internet, patient educa-tion, informatics

INTRODUCTION

The concept of consumer health informatics (CHI) offers many different in-terpretations to patients, health professionals, and health delivery systems.Some may conceive of it as the numerous Web sites that publish brochures on

Michele S. Klein-Fedyshin, MSLS ([email protected]), is Manager of Li-brary Services, UPMC Shadyside, Health Sciences Library, UPMC Shadyside HealthSciences Library, 5230 Centre Avenue, Pittsburgh, PA 15232.

Medical Reference Services Quarterly, Vol. 21(3), Fall 2002http://www.haworthpressinc.com/store/product.asp?sku=J115

2002 by The Haworth Press, Inc. All rights reserved. 35

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health topics or disease-focused chat rooms. A broader perspective on this newand rapidly developing field will enable us to understand and apply its ad-vances to benefit both patients and health care providers. “E health” care is justbeginning to take form, and it will impact all aspects of disease and wellnessfrom diagnosis through treatment. This article provides an overview of CHI,discussing its evolution and driving forces, along with advanced applications.Consumer health informatics will become integrated with medical care, elec-tronic medical records, and patient education to impact the entire procedureand business of health care.

DEFINITIONS OF CONSUMER HEALTH INFORMATICS

The definitions of CHI range from, “information supplied to patients usingadvanced information and communication technologies” to the “study, devel-opment, and implementation of computer and telecommunications applica-tions and interfaces designed to be used by health consumers.”1-4 Expansiveapproaches begin to encompass the many potentials of CHI.

Understanding the goals of CHI clarifies its applications for patients, pro-viders, and insurers. The objectives of patient-centered informatics applicationsinclude “providing information to consumers, promoting self-care, enablinginformed decision-making, promoting health behaviors, and promoting infor-mation exchange and social support.”5 Consumer health informatics ande-health initiatives will spread as the benefits become clearer and tools becomeeasier to use.

Another objective that drives implementation is business to consumere-health initiatives. A First Consulting Group (FCG) survey found patient/consumer satisfaction as the most important business driver behind e-healthinitiatives. Entrepreneurial physicians seeking to improve patient relationshave found e-mail an effective method for enhancing communication. Amongphysicians engaging patients online via e-mail, 90% saw an improvement, and24% experienced major improvement in patient satisfaction.6 Competitive ad-vantage, revenue growth, and physician satisfaction/retention were tied as thenext most important business impetuses behind e-health growth.

EVOLUTION OF CONSUMER HEALTH INFORMATICS

The evolution of consumer health informatics parallels the growth in thecapabilities of the Internet and electronic health care itself with increasingfunctionality, security, and speed. The technical developments pull e-healthcapabilities into more complex, responsive applications that allow for greaterinvolvement in patient education and care.

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Cisco and FCG developed a progressive 5-stage model of Internet matu-rity–Publish, Interact, Transact, Integrate, Transform–available at <http://www.fcg.com>.7 This will be discussed in relation to e-health components availabil-ity, and those upcoming in the market that relate to patient informatics. TheCisco/FCG model outlines generic stages of Internet development that beginswith publishing of primarily static information on such topics as drugs, dis-eases, and news. Consumer health Web sites such as NOAH fueled the initialdevelopment of consumer informatics by describing diseases and drugs in lesstechnical language. Consumers and patients could browse and digest informa-tion spending more time online than their physicians could spare.

The next development was the ability to interact. Interactivity dynamicallyengaged consumers by providing content and enabling them to interact withpersonally relevant online communities and customize Web information. The“Find a Physician” function where users enter a zip code and receive a list oflocal doctors is an example of interactivity in health informatics, as are thehealth tutorials on MEDLINEplus. The next advancement, the ability to per-form online transactions, is seen in the CHI applications of ordering drugs on-line from Web-based pharmacies. As part of the progression, integration ofmultiple transactions automates entire health care business processes. A dia-betic might input his or her blood glucose level online, which is received andread by a health professional who responds online with an insulin dosage rec-ommendation. Online disease management programs such as this are exam-ples of the incorporation of web technology into daily patient care processes.

Finally, transformation of the entire business by seamlessly integrating allprocesses through end-to-end Web-based interactions is the ultimate advance-ment. Within the realm of CHI, an example would be a parent filling out ane-form to triage whether a child needs to be seen by a physician, scheduling theappointment online while registering, using telehealth videoconferencing for avirtual office visit, then filling the prescription using a Web-based pharmacyand paying electronically. A totally electronic encounter is not far-fetched.

EXAMPLES OF CONSUMER HEALTH INFORMATICS

Dynamic, interactive consumer health projects are underway at many insti-tutions. Although many are in the development phase, they are moving CHIthrough the progression described above. Examples include personal healthrecords, smart cards, clinical e-mail, online pharmacies, and engaging con-sumers in shared decision-making. Each type of informatics initiative hassomething different to offer consumers who seek more active roles in theirhealth care. They benefit health care professionals and insurers in varyingways as well.

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Personal Health Records (PHR)

A modified electronic medical record geared for patients is being mountedmostly experimentally for patients to use to access and even correct their ownhealth data at some sites. Generally, it is unclear who owns and has ultimatecontrol over this record, but in some cases it may be either the hospital or pa-tient. The PHR can contain encounter information generated by visits such asallergies, lab results, medications prescribed, diagnosis, insurance informa-tion, and related data. Physicians’ notes might be excluded, included, or ed-ited. Frequently, PHRs contain links to medical definitions and encyclopediason disease and drugs which patients can click on from their PHR to obtain anexplanation of their own illness or medication. Most PHRs at this incipientstage rank at the second tier or “Interaction” level of the model. By allowingthe patient to correct or input personal data, they engage them. Some may al-low simple transaction level functions such as appointment scheduling or classregistration.

Two PHR projects are Special Vision from the Children’s Hospital of Pitts-burgh and PAMFOnline (Palo Alto Medical Foundation). Children’s Hospitalof Pittsburgh has contracted with Health Sciences Library System of the Uni-versity of Pittsburgh to participate in their federally funded “Special Vision”project. This multi-year project links Children’s providers, patients, and theirfamilies to a condensed personal health record to facilitate the delivery of co-ordinated care to children with special needs.

Special needs children are those suffering from chronic and often complexhealth concerns such as cerebral palsy or spina bifida. Typically, such childrenreceive care from a wide variety of specialists. Often there is a lack of commu-nication among these providers and between providers and families. SpecialVision will use a secure Internet connection to improve communication andinformation exchange for a select group of trial patients by giving the providerteam and families rapid access to current Patient Private Web Sites (PPWS).The PPWS contain essential medical and treatment information in a synopsisformat. Educational modules and Web links explaining each child’s pertinentmedical problems and treatments add to the informative power of the PPWS.An online Community Resource Center <http://www.chp.edu> aggregatesdisability Web links relating to children in a format patterned after a neighbor-hood. This gives parents and providers helpful Web sites to deal with physical,emotional, and legal aspects of their care. The virtual community forms a net-work for sharing information, mutual caring, and support.

A Harris Interactive study found that 72% of Americans say it’s difficult forpeople living with chronic conditions to obtain necessary care from theirhealth providers.8 By placing secured personal health data on the Web and al-lowing patients and providers access to them, PHRs create an infrastructure for

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the productive sharing of information. They eliminate barriers while empow-ering patients and professionals to work as partners to improve health commu-nication and care.9

PAMFOnline seeks to move e-health beyond using the Internet as a reposi-tory of data to online patient care. Previously, their PAMF Web site and elec-tronic health record developed separately. Now patients can see their diagnosisand medications online. Interactivity (class registration) and Web-based ac-cess to health information and providers are planned. PAMFOnline uses aproduct from Epic Systems <http://www.epicsys.com> labeled MyChart to in-tegrate the EMR and Web site content. The medical staff approves the infor-mation it provides. They envision a virtual medical office.10 Their demo site at<http://mychart.sutterhealth.org/mychart> displays the key components of apatient’s own health record.

Both patients and providers share online access to the data and informationin some models that are PHRs. New components are joint (if not equal) accessfor both parties to the health care transaction’s data, medical information, andcommunication. Typical goals are to automate services, save time, improveservice to the patient, eliminate record demographic errors, verify insurancedata, ease scheduling, and increase customer satisfaction. PHRs will eventu-ally interface more fully with the institution’s Electronic Medical Record, pro-pelling organizations that use them from Level 3 (Transact) on the model toLevel 4 with features that integrate medical care processes. If the goals areachieved, the impact would include faster access to physician services, quickercommunication of lab results, better patient comprehension of physician in-structions, and improved throughput of claims due to fewer record errors.

PHRs can be loaded onto “Smart Cards” that people carry with them as theytravel or relocate. UPMC Health System, affiliated with the University ofPittsburgh, recently piloted their “Healthcare Passport,” which is a wal-let-sized plastic card embedded with a computer chip that contains currentmedical information and vital data. The card can be inserted into a device thatreads the chip either by a professional or the patient. The card’s informationcan be updated and is designed with security measures to make unauthorizedretrieval difficult. The information is encrypted and requires PIN access. Inpartnership with a local bank, UPMC plans to enable patients to use their cardsto deduct physician co-payments and pharmacy items as another higher-levelmodel function.11

The PCASSO (Patient-centered access to secure systems online) projectrecognizes the vulnerability of Internet-transmitted data to confidentiality,identification, and corruption violations. This project was designed to developand test security measures as they apply to Internet access to health informa-tion.12 Using Web technology, the PCASSO project enables health care pro-viders and patients to search records and retrieve patient demographics, lab

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results, medication data, and transcription reports using the Internet. Examplesof PCASSO’s interface are online at <http://medicine.ucsd.edu/pcasso/>.

The PCASSO researchers identified many underlying problems with Internettransmissions. The process of transmitting data online leaves it vulnerable dueto unencrypted passwords, user and IP address authentication difficulties, un-bound IP addresses, and lack of confidentiality since data passed over theInternet can be “sniffed” to expose its contents.

What makes PCASSO special are the functional measures that are taken toprotect the transmission and restrict access to the health records. PCASSO au-thorizes users’ actions based upon their (4) roles (e.g., PCP, patient,) and howsensitive the information is to 5 different levels (low, standard, deniable,guardian deniable, patient deniable). Electronic handshakes, encryption andan authentication token (e.g., Security Dynamics SecureID card), and audittrail logs are among the protective measures built into the system. Their cau-tion is well placed. A hacker from the Netherlands stole 5,000 patient filesfrom a major university hospital in Seattle in the summer of 2000.13

PHRs remain experimental, and they lag behind health system portals inmaking it to the mainstream of acceptance. Yet, these pilot projects lay thegroundwork for model enhancements by identifying the problems and prog-ress that PHRs can bring to the health care system.

Clinical Use of E-Mail with Patients

Online communication between patients and health care providers assumesseveral forms. Net Wellness <http://www.netwellness.org/> features an “Askan Expert” component that allows people to type in a personal question and re-ceive an answer from a physician, nurse, or other health professional. Turn-around time is typically two to three days. This popular service has answeredover 17,000 questions since 1995. Professionals from the University of Cincinnati,Case Western Reserve University, and Ohio State University field the ques-tions. A disclaimer accompanies the page (Only your personal physician . . .can best advise you . . .). These questions don’t engender a contractual pa-tient-provider relationship, and legal issues are thus avoided.

Another form of electronic communication with patients is the online health“Coach.” Some health plans supply coaches to chronically ill patients such asasthmatics or diabetics to help them use drugs properly, monitor medication,and report home health measurements such as blood pressure or glucose lev-els. Some of this online discussion may occur in a public support forum orone-on-one. Other plans offer programs to stop smoking, nutrition informa-tion, or health status/risk appraisals online.

Some PHRs provide an e-mail capability for patients to communicate di-rectly with their own, personal health care provider. Called clinical electronic

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mail, this form of electronic messaging is defined as, “computer-based com-munication between clinicians and patients within a contractual relationship inwhich the health care provider has taken on an explicit measure of responsibil-ity for the patient’s care.”14 They differ from “Ask an Expert” type e-mail be-cause a contractual relationship exists between the personal clinician andpatient in clinical e-mail. This enhancement reflects the increasing personaliza-tion of the online interaction. This elevates such systems beyond the integrationlevel to the potential capability of the more transformational virtual office visit.

Medicolegal, privacy, and time concerns stymied widespread implementa-tion of clinical e-mail. AMIA published guidelines on the clinical use of elec-tronic mail with patients, which offer specific recommendations for this newcommunication medium.14 They address communication procedures (see Ta-ble 1) and medicolegal issues (see Table 2). As with most advances, pros andcons result for users, especially those on the leading edge of technology. Theasynchronous nature of e-mail means the receiver need not be present to acceptthe message. Telephone tag disappears. E-mail messages can clarify self-care

Michele S. Klein-Fedyshin 41

TABLE 1. Summary of Communication Guidelines

• Establish turnaround time for messages. Do not use e-mail for urgent matters.• Inform patients about privacy issues. Patients should know:

Who besides addressee processes messages– During addressee’s usual business hours.– During addressee’s vacation or illness.

That message is to be included as part of the medical record.• Establish types of transactions (prescription refill, appointment scheduling,

etc.) and sensitivity of subject matter (HIV, mental health, etc.) permitted overe-mail.

• Instruct patients to put category of transaction in subject line of message forfiltering: “prescription,” “appointment,” “medical advice,” “billing question.”

• Request that patients put their name and patient identification number in thebody of the message.

• Configure automatic reply to acknowledge receipt of messages.• Print all messages, with replies and confirmation of receipt, and place in

patient’s paper chart.• Send a new message to inform patient of completion of request.• Request that patients use autoreply feature to acknowledge reading provider’s

message.• Maintain a mailing list of patients, but do not send group mailings where

recipients are visible to each other. Use blind copy feature in software.• Avoid anger, sarcasm, harsh criticism, and libelous references to third parties

in messages

Reprinted with permission from the Journal of the American Medical Informatics Association,Volume 5, Number 1, Jan/Feb 1998. 1998 by American Medical Informatics.

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instructions, embed links to educational materials, document information con-veyed, and reduce time spent on the phone. Conversely, privacy concerns(non-discreet subject headers, forwarding of private messages, lack of encryp-tion), undefined limits for turnaround time, clerical overhead for printing andfiling messages inhibit the broad-spread adoption of clinical e-mail. The ad-vantages are clearer for the patient than the practitioner. Office practice com-plexities such as manpower for responding and triaging urgent messages arenot reduced. Yet, by allowing better follow-up of patients and the increasedability of patients to clarify residual questions, clinical e-mail has the potentialof increasing patient compliance for improved medical care.

E-Forms

E-forms are a blend between clinical e-mail and communication using thePHR. E-forms vary from simply electronic versions of paper forms to healthscreening surveys that calculate potential outcomes. Some examples are e-mailforms that parents can use to request appointments or refill their child’s pre-

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TABLE 2. Medicolegal and Administrative Guidelines

• Consider obtaining patient’s informed consent for use of e-mail. Written formsshould:– Itemize terms in Communication Guidelines.– Provide instructions for when and how to escalate to phone calls and office

visits.– Describe security mechanisms in place.– Indemnify the health care institution for information loss due to technical

failures.– Waive encryption requirement, if any, at patient’s insistence.

• Use password-protected screen savers for all desktop workstations in theoffice, hospital, and at home.

• Never forward patient-identifiable information to a third party without thepatient’s express permission.

• Never use patient’s e-mail address in a marketing scheme.• Do not share professional e-mail accounts with family members.• Use encryption for all messages when encryption technology becomes widely

available, user-friendly, and practical.• Do not use unencrypted wireless communications with patient-identifiable

information.• Double-check all “To:” fields prior to sending messages.• Perform at least weekly backups of mail onto long-term storage. Define “long-

term” as the term applicable to paper records.• Commit policy decisions to writing and electronic form.

Reprinted with permission from the Journal of the American Medical Informatics Association,Volume 5, Number 1, Jan/Feb 1998. 1998 by American Medical Informatics.

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scriptions. The most advanced e-forms include checklists that parents can fillout to determine if their child needs to be seen by the physician and enableself-triage. Like personal risk appraisals on the Web, they tally a response. Isself-triage dangerous? So far, there’s no standardization or evidence regardingthese forms.15 Most patients appreciate the opportunity to gain greater controlover the elements of their health care.

Online Pharmacies/Electronic Prescribing

CHI expands the role of consumers in their own health care through numer-ous venues. Proactive, cost conscious consumers can purchase prescriptionmedicines online from both national or foreign pharmacies and distributors.Reimporting U.S.-made drugs is not without its risks. FDA official William K.Hubbard cautioned a U.S. Senate Commerce Committee that reimports, “maynot have been stored under the proper conditions or may not be the real productbecause the U.S. does not regulate foreign distributors. Therefore, unapproveddrugs and reimported approved medications may be contaminated, subpotent,superpotent, or counterfeit.”16

Concern about online pharmacies prompted the FDA to post a brochure ontheir Web site written by CybeRx–a Smart Safety Coalition <http://www.fda.gov/cder/drug/consumer/buyonline/guide.htm>. Organized by the U.S. FDA,the coalition is comprised of 14 government, professional, and industry organi-zations. They’ve devised a seal of approval, the VIPPS TM seal, which standsfor “Verified Internet Pharmacy Practice Sites.” To further educate consumers,the coalition advises do’s and don’ts when purchasing drugs online. They rec-ommend only U.S.-based sites with the VIPPS seal of legitimate pharmacies,checking privacy policies, and visiting a doctor to obtain new prescriptions.17

Legitimate online pharmacies operate similarly to local drug stores. Userssubmit insurance and credit information to establish an account. Reliable sitesare licensed to sell prescriptions by the state where it is located or in thosestates to which it sells, if an out-of-state license is required. Users must thenprovide a valid prescription. Physicians can call it in or sometimes e-mail it, orcustomers can fax or mail it. Pharmacies may either mail products from a re-gional distributor or enable customers to pick it up at a local drug store. Medi-cations are typically delivered within three days. For an extra fee, overnightdelivery may be available. Customers can sometimes consult with a pharma-cist via e-mail or a toll-free phone number.

A questionable practice of some online pharmacies is offering a form whichpatients complete for online physician triage with resultant drug therapy. Ahazard of prescribing medication from a survey can be seen in the followingcase: “a 52-year-old Illinois man with episodes of chest pain and a family his-tory of heart disease died of a heart attack in March 1999 after buying the im-

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potence drug Viagra (sildenafil citrate) from an online source that requiredonly answers to a questionnaire to qualify for the prescription.” An actual of-fice visit with a clinician following the patient’s condition may have revealedthe contraindication to the drug.18

Patients may also buy home diagnostic kits from these and other sites. Do ityourself drug, alcohol, cholesterol, hormone, urinalysis, and other tests can bepurchased along with familiar pregnancy and ovulation kits. Some link to edu-cational or support Web sites. Do-it-yourself diagnosis can be followed bydo-it-yourself prescribing at “rogue” Web sites which allow prescription byquestionnaire.

Although online pharmacies open consumers to fraudulent products orpractices, electronic prescribing by physicians can help patients avoid medica-tion errors by automatically checking for allergies and drug interactions, andkeep costs down by staying with a managed care organization’s formulary.Electronic prescription’s advantages accrue whether the prescription is deliv-ered using an online or corner drug store. The cost implications alone may po-sition this function for growth and pivot organizations from interactive totransactional capabilities.

Clinical trials.gov and Centerwatch.com are consumer-oriented sites that en-able patients to find an experimental drug trial if they fail conventional therapy.They can be searched by disease or drug/treatment name. They benefit both pro-fessionals seeking patients to enroll and consumers seeking experimental thera-pies by increasing awareness of options and recruitment avenues. Like otherconsumer health sites, they empower patients to take more active roles and opennew opportunities to patients interacting within the health care system.

Shared Decision-Making

Patient empowerment has fostered the development of shared decision-making for people facing health care or treatment choices. Autonomous andself-determined adults want to make their own choices, and the widespreadavailability of information on the Internet has made learning the options easier.Most consumers rely on general search engines and do not go to health-relatedWeb sites initially, while others have found favorite health or disease-relatedsites. A few select evidence-based or decision aid sites specifically assist withmaking treatment or other choices. Some focus on particular diseases whileothers provide tools appropriate for any disease. Yet, when health topics areexplored on the Internet, 77% have specific questions and health issues.19 Dr.Tom Ferguson estimates the proportion of “health active” medical consumers,people who are involved and responsible for their health, has increased from1% to 2% in 1975, to 30% to 35%, many of whom are online.3

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Many health care providers welcome the introduction of patients into thedecision-making process. They bring their own values and preferences, whichshould be an integral part of option preference. The Foundation for InformedMedical Decision-Making, led by Drs. John Wennberg and Albert Mulley,originated the seminal work of the field <http://www.dartmouthatlas.com/shareddecisionmaking/sdm_1.php>. Their impetus sparked the developmentof new instruments to assist with shared decision-making using reliable infor-mation. Carefully designed decision aids with vetted, quality information havebeen found to improve knowledge, reduce decisional conflict, and involve pa-tients in their care without increasing anxiety.20

Examples include the Shared Decision-making Programs® distributed byHealth Dialog. These educational videotapes do not diagnosis or recommendtreatments for patients. Instead, they present possible options along with thepros and cons of each one. They use videotape technology, graphics, inter-views with actual patients and physicians, factual data, and objectivity to allowpeople facing choices to consider for themselves. Weighing the risks and bene-fits enables patients to make individual choices. A “health coach” can be calledwho has access to an algorithm system that prompts them with questions to askthe caller and supports them in the decision-making process. Presently, 13tapes exist covering such topics as Breast Cancer Surgery, PSA tests, Treat-ment choices for Prostate Cancer, and Hormone Replacement Therapy. Theyare updated with new information quarterly.

The DISCERN instrument <http://discern.org.uk> was created to help pa-tients judge the quality of written information about treatment choices. Someof its uses include: aiding individual consumers who are in the process of mak-ing a decision about a treatment; suggesting issues to discuss with health pro-fessionals; and engaging patients in a step-wise evaluative rating of theinformation at hand. Just having the DISCERN rating form in hand can helphealth care professionals communicate with patients by giving them a frame-work for their discussion. Authors creating patient education information findit helpful as an outline of topics to cover. Thus, originators and consumers ofconsumer health information benefit from this tool.

By involving patients in their disease management, shared decision-makingfurthers the integration of the organization with the customer. Presenting accu-rate, comprehensive information at choice points enhances the trust betweenpatients and providers. Optimally using information means that it is accurate,current, and relevant to the patient’s case. Patients should make evidence-based choices; however, some of these health active people doing independentresearch may not ask the question, “Is this information good for me?” (<http://nnlm.gov/pnr/hip/criteria.html>). Distinguishing a case report from a clinicaltrial, news opinion from fact and statistically significant results can be difficultfor those unfamiliar with medicine.

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INFORMATION QUALITY, READABILITY,AND HEALTH LITERACY

Previous discussion alluded to the appropriateness of health informationto a particular patient. An equally relevant concern is the accuracy, com-pleteness, and readability of health information on the Web. A study inJAMA (May 23, 2001) included detailed questions on four diseases and ratedthe difficulty of finding information, its reading level, accuracy, and com-pleteness. The study results found that on 18 English language sites, on aver-age the sites offered complete and accurate information on breast cancer 63%of the time, on childhood asthma 36% of the time, on depression 44%, andobesity, 37%.21

Even though the study consider only top-rated sites, researchers still deter-mined that they found complete and accurate information only 45% of the timeon average. Within the same site and on the same topic, reviewers locatedsome information that contradicted the presented information 53% of the time.These inconsistencies come from sites considered “better” by those who se-lected them. The dubious quality of some health information on the Internetdoesn’t mean it isn’t found and used by patients.

Couple information quality issues with questions about the patient’s healthliteracy, and the value of the “information experience” becomes contingentupon numerous factors. Functional health literacy describes, “the ability levelof an individual to access, understand, and participate in health care.”22 Healthliteracy entails such abilities as understanding and complying with a prescrip-tion (4 � a day = every 2 hours, every 6 hours, 4 all at once), comprehendingdietary information (fats, carbohydrates, proteins–which one is an olive?), andunderstanding wellness concepts (Why shouldn’t I smoke if I’m pregnant?).Data shows that the risk of hospitalization is increased in persons with low lit-eracy and that hospitalization linked to limited literacy skills may be costing asmuch as $8 to $15 billion a year.22

Most patients with literacy problems will not stand up and volunteer thisinformation. Rather, providers can detect it when patients can’t fill out theirregistration forms, follow directions to their office, or comply with recom-mended treatments. These people need extra time, personal assistance, andverbal explanations. People with English as a second language or with hearingdifficulties common in older populations confront additional comprehensionchallenges.

The process of finding information is only one component in the process ofcomprehension. Patients need to learn the qualities of a “good” site, statisticalevaluation, and health literacy to understand the information located. Misin-formation can harm patients by suggesting supplements that can negatively in-teract with prescribed medicines or abandoning legitimate therapies to pursue

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unproven remedies.23 Information presented on health system portals needs tobe accurate, consistent, and updated when superseded by new information. Acorporate image becomes linked with the type, quality, and veracity of theelectronic information it provides.

DOCUMENTATION OF PATIENT EDUCATION

Time constraints and decreased lengths of stay limit the opportunities to in-form patients about their drugs and disease management. These understand-ings are essential for recovery, to avoid medication errors and controllingsymtomatology. The JCAHO sets standards for Patient and Family Educa-tion,24 and they assess compliance during accreditation inspections. Chart au-dits are one mechanism for determining the performance of education. Docu-mentation is vital because, “from a legal standpoint, if patient education is notdocumented, it is considered not done.”25

CHI tools offer consistency, repetition, and flexibility in scheduling if theyare incorporated into the patient care process. Closed circuit TV can displayapproved videos on topics from newborn care to angioplasty recovery. Shareddecision-making programs and Internet accessible patient information hand-outs help conduct education even in busy clinics. Most systems don’t automat-ically document the display of educational programming, so documentationstill remains a provider’s responsibility. JCAHO considers patient educationan interdisciplinary process for which all health professionals are held ac-countable.25

Institutions use varying approaches to encourage education documentation.Some incorporate it into multifunctional forms that chart vitals, nutritional in-take, or medications. Others create forms that are interdisciplinary or flowsheets.26,27 JCAHO stipulates that patients’ readiness to learn and needs mustbe included, along with an evaluation of understanding. Sasala and Jasovsky’sarticle details a form they developed which incorporates these consider-ations.25

Electronic medical records may someday automatically note when a patienthandout has been printed for a particular patient, and allow a sign-off that it hasbeen delivered and explained. It may even send an alert that the system offers asuitable patient handout to suggest the educational opportunity. Systems mayeventually predict an opportunity for education, suggest or furnish appropri-ate, personalized educational materials, and document their delivery on theelectronic chart; perhaps following-up with a posttest to assess comprehensionthat prints automatically. This borders on a more transformational functionsince it anticipates the information need and responds seamlessly.

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CONCLUSION

CHI is in a developmental phase with growth paralleling that of the Internetitself. It is evolving and expanding to meet the needs of the health care businessand facilities in the information business, be they libraries, resource centers, etc.The excitement and promise of CHI is that its audiences may achieve improvedcompliance or more truly informed decision-making.28 More tools will enablepatients to find information better and better information, integrate that into theirown personal health records online, interact with their physicians in more for-mats, coordinate more of their own self care, and suggest diagnoses and treat-ments to their providers using evidence-based sources. When developed, CHImodules on PDAs will continue the transformation. CHI may save money withreduced medication errors, fewer procedures in the face of enlightened informedconsent, and monitored disease management. Once PHRs and other forms ofCHI are fully functional, research on how well they meet their goals will be fer-tile ground. The caveats associated with health informatics discussed here re-main obstacles needing addressed. Yet, it has the promise of improving patientrelations with providers and health systems by personalizing care in new ways.Ultimately, as CHI progresses through the stages to maturity, it holds potentialfor simply better patient care and compliance.

Received: February 15, 2002Revised: February 22, 2002

Accepted: February 25, 2002

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