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Outcomes and Challenges of eHealth Approaches: Panel 1

INTERNET APPROACHES FOR eHEALTH IN LOW-LITERACY AND LIMITED-ENGLISH-PROFICIENCY POPULATIONS

Rita Kukafka, Dr.P.H., M.A.

Columbia University, Mailman School of Public Health


The Harlem Health Promotion Center (HHPC) is one of the 33 Prevention Research Centers1 funded by the Centers for Disease Control and Prevention to conduct applied research into disease prevention. These research centers serve as a bridge between science and practice, and between academia and vulnerable communities, working with communities to identify areas of concern and to develop practical strategies to address these concerns.

Since 2004 the HHPC has been using the methods of participatory action research2 to develop the Digital Partners in Health Project, a health portal designed to provide culturally-relevant health information and decision support to consumers with low literacy. Building the project required information about how people of color use technology and seek health information. Unfortunately, there is very little community-level

1

Prevention Research Centers are “a network of academic researchers, public health agencies, and community members that conducts applied research in disease prevention and control” (CDC, 2008).

2

“Participatory action research (PAR) is a method of research where creating a positive social change is the predominant driving force” (Seymour-Rolls and Hughes, 2000).



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3 Outcomes and Challenges of eHealth Approaches: Panel 1 INTERNET APPROACHES FOR eHEALTH IN LOW-LITERACy AND LIMITED-ENgLISH-PROFICIENCy POPuLATIONS Rita Kukafka, Dr.P.H., M.A. Columbia Uniersity, Mailman School of Public Health The Harlem Health Promotion Center (HHPC) is one of the 33 Pre- vention Research Centers1 funded by the Centers for Disease Control and Prevention to conduct applied research into disease prevention. These research centers serve as a bridge between science and practice, and between academia and vulnerable communities, working with commu- nities to identify areas of concern and to develop practical strategies to address these concerns. Since 2004 the HHPC has been using the methods of participatory action research2 to develop the Digital Partners in Health Project, a health portal designed to provide culturally-relevant health information and decision support to consumers with low literacy. Building the project required information about how people of color use technology and seek health information. Unfortunately, there is very little community-level 1 Prevention Research Centers are “a network of academic researchers, public health agencies, and community members that conducts applied research in disease prevention and control” (CDC, 2008). 2 “Participatory action research (PAR) is a method of research where creating a positive social change is the predominant driving force” (Seymour-Rolls and Hughes, 2000). 

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0 HeALtH LiteRACY, eHeALtH, AnD CoMMUniCAtion data about such use, although some national and regional data do exist. Furthermore, little is known about the extent to which people of color have access to, or interest in, using the Internet for health-related activities. For these reasons researchers at the HHPC spent a significant amount of time collecting data using a random-digit-dial survey of 646 Harlem residents 18 years of age and older. The survey collected data on the use of and access to different types of technology as well as data on demograph- ics, general health, and health-information-seeking behaviors. About 77 percent of responders said they had used a computer and 87 percent reported having friends or family who use the Internet. This is useful information for understanding diffusion of and normative support for technology use. The survey also found that 68 percent of respondents had one or more computers at home and 57 percent used the Internet at home. For those who did not have a computer at home, 76 percent said they knew where a computer was publicly available. Sixty percent of respondents said that the most important problem in accessing the computer is overcrowding. Other problems in access were cost (2 percent), equipment problems (4 percent), location or transportation (8 percent), and hours of operation (13 percent). It is certainly true in Harlem that libraries have long lines waiting for access to the Internet. These data show that there is an interest in using technology. An examination of the demographics of those surveyed reveals that younger people are more likely to use the Internet, that English-speakers are more likely to use the Internet than those whose first language is other than English, and that African-Americans are more likely to be Internet users than Hispanics and Latinos. The data also show that Internet users are more likely to have higher educational attainment, are more likely to be employed, and have higher incomes than those who do not use the Internet. Internet users also had a higher perceived self-health rating. As the data in Table 3-1 show, Internet users are more able to find health information and have less difficulty understanding it than non- users. On the other hand, there is no significant difference between Inter- net users and non-users when asked if they bring up something they have seen or read with the doctor. Survey participants were also asked where they went the last time they needed information on a health issue. Doctors were the main source of information for both Internet users (44 percent) and non-users (78 per- cent), although non-users were much more likely to go to their doctors for information. The major difference between the groups was that 39 percent of Internet users said that they went to the internet for health information, which implies that the Internet users go to the internet for health informa- tion almost as often as they go to their doctors.

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 PAneL  TAbLE 3-1 Health Information Seeking by Current Internet Use Internet Users Non-Users P Value “I have difficulty understanding a lot 70 (21.2) 128 (42.0) <0.0001 of the health information I read.” “When I read or hear something 274 (83.3) 272 (87.7) 0.1101 concerning my health care, I bring it up with my doctor.” “It is hard to find good answers to my 90 (27.5) 142 (47.3) <0.0001 health questions and concerns.” “Very” or “Somewhat” confident 290 (88.2) 247 (80.7) 0.0096 in ability to get health advice OR confidence in ability to get health advice or information if needed Scale: (1) Very confident, (2) Mean (SD) Mean (SD) 0.0014 Somewhat confident, 1.53 (0.77) 1.75 (0.92) (3) Slightly confident, (4) Not confident at all. SOURCE: Kukafka, 2008. Participants were also asked how much they trust health-related information obtained from different sources. Figure 3-1 displays their responses. As can be seen, health care professionals are rated as an extraordinarily credible source of information. A high percentage (71 percent) of Internet users also trust health-related information found on the Internet. The data also show that 63 percent of those who go to the Internet search for health information about specific diseases. This seems to be the major motivator for people to exert the effort needed to access information on the Internet. Sixty-one percent of people who go to the Internet look for information on diet, nutrition, and fitness. Other types of information sought on the Internet by the Harlem respondents included medicines (44 percent); insurance, doctors, or hospitals (38 percent); mental health (22 percent); sexual health (26 percent); substance abuse (21 percent); and smoking cessation (14 percent). In terms of barriers to Internet use, the study found that the responses for non-users about why they did not use the Internet were, in order of frequency: worry about pornography and fraud, followed by not wanting or needing the Internet; too expensive; no time; and too complicated and hard to understand. Non-users were also asked to indicate whether they agreed with a number of statements. The Internet:

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 HeALtH LiteRACY, eHeALtH, AnD CoMMUniCAtion • ould help them find out things easily—82 percent agree, 10 per- W cent disagree • elps people keep in touch—79 percent agree, 11 percent H disagree • Is mostly entertainment—55 percent agree, 34 percent disagree • ’m missing out by not using it—54 percent agree, 39 percent I disagree • Is a dangerous thing—51 percent agree, 41 percent disagree • Is too expensive—50 percent agree, 31 percent disagree • Is confusing, hard to use—38 percent agree, 29 percent disagree The HHPC also used focus groups to gather information. The data that follow are from 6 of the 17 focus groups, 3 with Hispanic-speaking populations and three with English-speaking populations. Each group had 6 to 8 participants, and each person was asked to characterize himself as either Web user or non-user. Results from these focus groups indicate that both Web users and non-users consider the Internet to be a legitimate source of health information, even among those for whom the Internet was not the preferred source. Convenience of use was a major factor in the use of the Internet. Although participants reported enjoying the freedom that the Internet allowed, many said they had difficulty understanding Non-Users 46% Television 52% Internet Users 29% Internet/Web 71% 37% Radio 41% 40% Newspapers/Magazines 57% 49% Family/Friends 58% Health care 90% 94% professional 0% 20% 40% 60% 80% 100% FIguRE 3-1 Trust in sources of health information. SOURCE: Kukafka, 2008. Figure 3-1

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 PAneL  information found online and expressed a need for assistance in interpret- ing the health information. One of the major barriers to seeking mainstream health information that the focus groups identified was suspicion and mistrust of the medical community, as illustrated with the following quotes: “I think one of the keys is that there is money involved. It is all about greed.” “Those of us who are African-Americans are still grappling with the Tuskegee studies and the aftermath. So there are a lot of historical monsters with which we identify when it comes to medical community treatment and medical residents.” “Then that leads me to conclude that there is just a lot of gen- eral information that we are not getting. There seems to be a mainstream level of information which gives you stuff to lead you into drugs, different things like that . . . there is like a whole stream of other viable alternatives that could work but you don’t even hear about because it will blow all the mainstream drugs out.” “The pharmaceutical companies are in bed with the FDA.” When members of the focus groups were asked what sources of infor- mation they trust, their answers included (ranked from most-mentioned to least-mentioned: their mothers; folk and alternative medicine (“grand- mother’s cures”); the health care provider; and, finally, the Internet. Everyone was aware of the importance of lifestyle, diet, and stress as con- tributors to health, but they expressed a general frustration with attempts to improve in these areas. Using these data as background for understanding community atti- tudes, the HHPC project set out to build a Web portal3 that Harlem resi- dents would use. The conclusion was that the Web portal platform would need to do more than deliver health information, even if it were at a lower health literacy level, the portal would have to encourage a level of trust and cultural relevance as its foundation. Developing the Web portal involves more than just developing con- tent and images aimed at a particular literacy level. What HHPC realized is that the portal needs to facilitate an architecture of participation such as that found on Web 2.0, including such tools and services as blogs, RSS feeds,4 and wikis. These different Internet instruments are examples of self-organizing structures where the principle of evolution will lead, in the course of time, to correct and complete content. Table 3-2 provides a comparison of the principles of Web 2.0 tech- 3 “A Web portal is a term, often used interchangeably with gateway, for a World Wide Web site whose purpose is to be a major starting point for users when they connect to the Web” (MariosAlexandrou.com, 2008). 4 RSS (Really Simple Syndication) feed. “A syndication format that was developed by Netscape in 1999 and became very popular for aggregating updates to blogs and the news sites. RSS has also stood for ‘Rich Site Summary’” (PC Magazine, 2008).

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 HeALtH LiteRACY, eHeALtH, AnD CoMMUniCAtion TAbLE 3-2 Comparison of Principles of Web 2.0 and Web 1.0 Principle Web 2.0 Traditional (Web 1.0) Power Decentralized (autonomy; Centralized (experts); information self sufficiency) dependence Priorities Guided by community Guided by technology perspectives/norms, bottom up developers Filtering Downstream (e.g., user ranking) Upstream Nature of information Coproducers Passive receivers— consumption consumption Learning Collective—capacity building Exclusive Content Credibility Based on understandable Based on science language, experiential knowledge Culture Enabling Compliance SOURCE: Kukafka, 2008. nologies with the more traditional Web 1.0.5 In moving from the Web 1.0 technology to Web 2.0 one moves from a centralized control situation to one of decentralized priorities. This is consistent with participatory action research methods, the methods used in the HHPC approach. There are a number of mechanisms available in Web 2.0 by which the community filters material, such as community ratings. With Web 2.0 the receivers of information are coproducers of information as well, rather than just passive recipients, so that eventually, if enough people use the system, information is self-corrected. Content in Web 2.0 technologies is based on the experiential model or knowledge, and the culture of the technology moves from one of compliance to an enabling culture. Web 2.0 structures facilitate social networking participation, collabo- ration, and openness within and between user groups. Information in this newer type of platform is liberated from the control of experts, which in the Harlem community was a source of mistrust. Community members will be able to create, assemble, organize, locate, and share content to meet their own needs and the needs of their community. In a Web 2.0 technology, information is perceived as direct or unme- diated. Such information is more credible than mediated information because the presence of mediation through a gatekeeper makes it pos- 5 Web 1.0 is “a general reference to the World Wide Web during its first few years of opera- tion. The term is mostly used to contrast the earlier days of the Web before blogs, wikis, so- cial networking sites and Web-based applications became commonplace” (http://dictionary. zdnet.com/definition/Web+1.0.html). Accessed November 3, 2008.

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 PAneL  sible to question the motives and intentions of the communicator (Stamm and Dube, 1994). A study by Baldry and colleagues showed that when health professionals actively encourage patients to view their own health records, it helps restore patient trust in the medical system (Baldry et al., 1986). Therefore, if the gatekeeper (e.g., the provider or hospital) moves out of the way and enables patients to view direct, unmediated informa- tion, that will improve the patients’ level of trust in the provider. As mentioned previously, the Digital Partners in Health project uses participatory action research (PAR) methods. The key goals of PAR are to produce knowledge and action that are directly useful to a group of people and to empower people at a second and deeper level through the process of constructing and using their own knowledge. Web 2.0 tech- nologies can serve as an informatics approach to facilitate the principles and characteristics of PAR in disadvantaged populations. If one examines why PAR works, one finds that its principles are very similar to Web 2.0—-that is, enabling the community itself to become part of the process, to communicate and participate, instead of using a closed technology driven by experts. Developing the contents of the portal has involved a number of dif- ferent types of individuals: technology developers, community people, informaticians, and public health people. There has been a great deal of negotiation among them about how much of the content on the portal will be unmediated (out of the control of experts) versus how much of it will be mediated. Some of the technology specifications, developed on the basis of user input, include the following • ebsite content can be viewed by anyone but users must register W to post or comment on the site’s content. • Registered users can: � submit their own blog (e.g., “How I quit smoking after ten failed attempts”) or create special interest groups and social networks, each with its own discussion forums; � post events of interest, links to useful health resources, or participate in several special programs, such as the Harlem YMCA-sponsored Fitness Challenge; and � rate posts made by other users or flag posts as inappropriate (community policing and appraisal). • n overall moderating team consisting of our experts as well as A users will provide editorial control to ensure content quality. The resulting website (gethealthyharlem.org) is not static. For exam- ple, there are RSS feeds of Harlem-specific health news where mem- bers can post comments and debate the news online. The website is not

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 HeALtH LiteRACY, eHeALtH, AnD CoMMUniCAtion disease-driven; it is driven instead by determinants of health. Therefore it includes topics such as fitness, events, and spiritual concepts. Using empirical evidence about modifying health behavior and improving health outcomes, HHPC is attempting to use technology to engage people in health, building that technology on empirical data about what works and what does not. The platform and tools have a clear fit with the goals of HHPC and the populations with which it works. Careful thinking, testing and evalu- ation research are still needed in order to establish best-practice models for leveraging these emerging technologies and to boost our ability to support health improvement in our community. In conclusion, Kukafka quoted John Dewey, “If the living, experiencing being is an intimate par- ticipant in the activities of the world to which it belongs, then knowledge is a mode of participation, valuable in the degree in which it is effective. It cannot be the view of an unconcerned spectator” (Dewey, 1926). My HEALTHeVET Kim nazi, F.A.C.H.e. Management Analyst, veterans Health Administration In response to the Institute of Medicine report, Crossing the Quality Chasm, the Veterans Health Administration (VHA) of the Department of Veterans Affairs (VA) began efforts to bring a consumer focus to organi- zation-wide electronic health record development so that patients could directly obtain the benefits of technology. The two major components of eHealth at the VA are the electronic health record—which includes the CPRS (computerized patient record system), BCMA,6 and VistA imaging,7 supported by VistA (Veterans Health Information Systems and Technol- ogy Architecture)—and the personal health record, My HealtheVet. These components offer a number of improvements over the previous system, including more comprehensive records, access to trusted patient educa- tion, engagement and action, patient safety, medication reconciliation, patient concordance, wellness reminders, decision support, communica- tion, and patient and provider partnerships. The development of My HealtheVet has been guided by the belief that 6 “Bar Code Medication Administration (BCMA) is a point-of-care software solution that addresses the serious issue of inpatient medication errors by electronically validating and documenting medications for inpatients. It ensures that the patient receives the correct medication in the correct dose, at the correct time, and visually alerts staff when the proper parameters are not met” (Department of Veterans Affairs, 2008a). 7 The VistA Imaging system makes the complete multimedia patient record available to clinicians and patients (Department of Veterans Affairs, 2008b).

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 PAneL  knowledgeable patients are better able to make informed health care deci- sions, stay healthy, and seek services when they are needed than patients who are not as knowledgeable about their care. In the pilot project now underway, patients are able to access data from the electronic health record, supplement those data with self-entered data, and control access to that information. The pilot project began in 1999 and has about 7,500 participants spread across nine VA Medical Centers. Once the same kinds of features are available in the national My HealtheVet program, the pilot will be discontinued. In November 2003, on Veterans Day, VA introduced the national My HealtheVet, beginning with some patient education modules. Since then a variety of features have been added, including online prescription refills (which has been one of the most popular features), content centers (ori- ented to specific conditions or health and wellness), self-assessment tools, health journals and e-logs, veteran-specific conditions, seasonal health reminders, a wellness calendar, and a complete medications view. My HealtheVet (www.myhealth.va.gov) has three tiers of access. The first tier is intended for visitors, who can view health education libraries and other publicly available content. The second tier is for veterans who self-register for an account and begin to build a personal health record. In particular, patients who register for My HealtheVet can begin to input and track personal information. The third tier of access demands in-person authentication8 and connects the veteran registration data to the veteran as a VA patient. This authentication allows the veteran access to addi- tional features, such as the ability to view medication names when order- ing VA prescription refills and access to the VA medication history as an extract from the VA electronic health record. Many of the screens within My HealtheVet have printer-friendly functions. There is even a printer- friendly wallet card on which patients can choose to print specific data. There are several different tabs available in My HealtheVet. Using the pharmacy tab, VA patients can refill VA prescriptions, keep track of their prescription history, and even track over-the-counter medications and prescription medications that they are getting from physicians outside the VA. The Research Health tab allows patients to look at multiple media, including interactive images and video on diseases and conditions of interest. There are also direct links to MedLine Plus9 and Healthwise.10 8 Data from the American Customer Satisfaction Index indicate that “in-person authenti- cation” is difficult to understand; therefore, VA will review the language to try to make the information and process understandable to patients in a much more user-friendly way. 9 MedLine Plus is a website network database of health information provided by the National Library of Medicine and the National Institutes of Health for use by consumers and health care providers. 10 “Healthwise is a nonprofit organization with a mission to help people make better health decisions. Nearly 100 million times a year, people turn to Healthwise information to

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 HeALtH LiteRACY, eHeALtH, AnD CoMMUniCAtion In the Get Care tab, patients can keep track of their providers, their treatment locations and facilities, and health insurance coverage. The Track Health tab allows patients to keep track of their health history, vital signs and readings, test and laboratory results, family health his- tory, military health history, allergies, and immunizations. Patients can also view graphs of self-entered data. Using the printer function they can print these graphs and bring them to a clinic visit. In the pilot program patients are allowed to authorize other persons to have electronic access to their files for a specific amount of time, and this is planned for the national program, as well. There are nearly 24 million veterans and 259,000 VA staff who are eli- gible to use the My HealtheVet system. Of the veterans, almost 8 million are enrolled for care in the VA. At this time, there are currently more than 550,000 registered users of My HealtheVet, 71 percent of whom are actu- ally VA patients. As mentioned previously, there is a three-tiered access to the system—visitor, registered members, and authenticated members. There are currently 59,000 veterans who have been in person authenti- cated and are now able to receive VA prescription medication names as the initial extract from the electronic health record, thereby improving medication reconciliation. More than 5.3 million prescription refills have been processed since August 31, 2005, and more than 16 million visits have been made to the My HealtheVet website since it was launched in November of 2003. The median age of users of the My HealtheVet is 59, and the age seg- ment with the largest number of users is from 60 to 64 years old. During the past two quarters, however, the greatest population growth occurred in the younger ages—soldiers returning from Iraq and Afghanistan. That population is computer literate and has high expectations for being able to interact via computer with the VA. VA has implemented the American Customer Satisfaction Index (ACSI) among users of My HealtheVet. Information obtained for that index includes the veteran’s period of service, age, and frequency of visits. The majority of users are from the Vietnam War era. Thirty-five percent of users are from 51 to 60 years of age, and 33 percent are from 61 to 70 years. Fifty-one percent of users visit the website approximately once a month, while 25 percent actually visit once a week. Based on information from the ASCI, the satisfaction with My learn how to do more for themselves, ask for the care they need, and say “no” to the care they don’t need. Healthwise partners with health plans, hospitals, disease management companies, and health Web sites to provide up-to-date, evidence-based information to the people they serve. To learn more about the Healthwise Information Therapy (Ix ®) Solution, visit www.healthwise.org or call 1.800.706.9646” (Healthwise, 2008).

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 PAneL  HealtheVet is high. When asked if they were satisfied with the My HealtheVet program overall, visitors rated My HealtheVet highly, with an average satisfaction rating of 8.3 out of a possible 10. When asked how likely they were to recommend My HealtheVet to someone else, most visi- tors indicated they would recommend the site with an average likelihood score of 8.6 out of 10. Veterans also indicated that they were highly likely to return to the site and use it, with an average score of 9.1 out of 10. In addition to providing services through My HealtheVet and assess- ing consumer satisfaction, the VA is conducting performance evaluations of the reach, effectiveness, adoption, implementation, and maintenance (RE-AIM) of the system. The VA believes that it is important not only to track the effectiveness of an intervention, but also to evaluate the adop- tion of these tools used by both the patients and the clinicians. The ulti- mate goal of these evaluations is to learn how to provide access to every veteran in the country in such a way that the system can be maintained over time. There are many benefits of the My HealtheVet. In terms of health literacy, access to information is a major issue. There is a vast amount of information available to users of the Internet but it is not all necessarily useful or helpful. Access to relevant, trusted, patient health–education tools and resources such as are available at My HealtheVet increases a patient’s level of engagement and fosters informed decision making. Ensuring that these sources are highly functional and easy to use, with information presented in a patient-friendly manner is one way that health literacy can be improved. Content development includes input both from experts who pay attention to the language that is used with the goal of making it as understandable as possible, and from the results of focus groups that test the content to make sure patients can understand. Another benefit to patients is that access to care in multiple settings is facilitated by the VA’s electronic health record and My HealtheVet. Such access improves veterans’ timely access to services, enhancing utiliza- tion management. A veteran could travel to a distant part of the country, for example, and still be able to have a clinician call up a record that stores information from all different sites where the patient has received care. Furthermore, My HealtheVet increases the patients’ ability to derive meaning from health information and make informed decisions by com- bining usable, patient-friendly information in engaging formats with a variety of other tools such as wellness reminders. My HealtheVet also allows veterans to input information from care provided in community settings. About 40 percent of the VA population receives care outside the VA system so universal secure access to patient health information is critical to providing integrated care coordination among multiple providers.

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0 HeALtH LiteRACY, eHeALtH, AnD CoMMUniCAtion Finally, personal health records such as those in My HealtheVet use technology to facilitate improved communication between patients and health care providers. Secure messaging will add new tools to supplement traditional care interactions. VA is currently in the alpha testing stage of secure messaging. The contributions of eHealth to the goals of health literacy and improving patient outcomes can be very powerful, Nazi concluded. My HealtheVet is transforming health care by enhancing communication and providing veterans access to information that they can understand and use to make good health decisions. DISCuSSION George isham, M.D., M.S. HealthPartners Moderator An audience member asked Kukafka whether the extent to which respondents in the Harlem survey used the Internet for purchasing had any correlation with their level of comfort about obtaining health informa- tion. Kukafka responded that while data on commerce was collected, she did not have those data available and was unable to provide an answer. The same participant, noting that Kukafka’s presentation mentioned wariness and mistrust of medical institutions, asked: Do the data indicate that the information would be viewed more credibly if it was derived from the individual’s primary care provider or their medical home? If the primary care provider was the author of information on the Internet site, would it be viewed as credible? That specific question was not asked, Kukafka replied, but the answer to the question is empirical. Currently, however, the data are not yet available to determine the answer. Results of the survey and the focus groups do indicate that the credibility of information from the health provider was rated as very high. On the website, well known community providers serve as creators of content. For example, information is being developed and provided by the Harlem Health Promotion Center and key community health care providers. However, equal time is given to any participant in the community who wishes to contribute. The community itself will then rate the information. If there are blogs provided by a group that forms in the community and there are also blogs created by experts, one could measure hits on the sites in order to evaluate which blogs are used more and thus get a good idea of which contributors are viewed as more credible. Another audience member said that she is delighted to find that

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 PAneL  people might doubt all the information provided to them by such sources as a drug company or a physician who might have been detailed by a drug company. What is troubling, she said, is that no one is following the money trail on dietary supplements. For example, individuals read about how they can improve their health by taking Vitamin C, or Vitamin E is marketed in some popular magazine. While there is nothing wrong with marketing these supplements, somehow individuals fail to think about the greed factor with the supplements, which are a multi-billion dollar business. Perhaps one should use individuals’ natural skepticism as an educational entrée on things such as dietary supplements which deserve skepticism similar to that directed toward the medical establishment. There is also the issue of the placebo effect which should be part of the educational effort Those are excellent points, Kukafka responded. The idea is that the website will provide a platform for discourse on such topics. As these things arise, there will be educational opportunities to correct erroneous information. But such information cannot be provided “up front” by the experts because it will then be perceived as not credible. It must be part of the discourse. Kukafka was asked how large a pool of interactions was needed to have a self-correcting group that arrives at the truth through primary sources as opposed to seeking out experts. She responded that it is not known what the necessary number is. The available data show that what- ever the size of the population using a wiki, only a small number of indi- viduals in that population will actually make edits. One has to be able to divide the population into those who are making corrections and those who are only viewing. It is interesting that if one examines the numbers of hits for wiki sites versus those sites based on health expert design, the wiki sites tend to draw larger numbers. Another audience member said that wikis are being used to evaluate various professionals. For example, in San Francisco a website was estab- lished recently to evaluate police officers, but it was immediately taken down. Perhaps there are aspects of wikis that could be used to evaluate one’s health care providers in terms of their sensitivity or competency in health literacy. Yet another audience member said that she was concerned that, with the use of wikis, someone might actually act on health information before it is corrected. Kukafka was asked how liability is being addressed. She responded that there is a disclaimer on the site and that editorial control group will be monitoring the content. Asked about how content development for non-English-speaking populations was proceeding, Kukafka responded that currently the portal is being developed in English because of the

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 HeALtH LiteRACY, eHeALtH, AnD CoMMUniCAtion complexity involved. There is a complementary project that will link the portal to a more traditional personal health record that has the traditional functions such as patient reminders and prescription refills. There will also be point-of-care patient education. The portal, however, provides very different kinds of content—in particular, more actionable content. When a doctor tells a patient to con- trol his or her blood pressure, for example, the “how to do it” is the part that is often missing and, furthermore, is very community-specific. The portal is a place to go to hear about what others have tried to do, what they have done or could not do, as well as a place to join groups or start groups aimed at accomplishing specific things. One participant commented that the statistics provided on the num- ber of people who have access to and use the Internet are encouraging. She then asked Kukafka if, when conducting the telephone survey, the interviewers probed those individuals who do not have a computer or did not use the Internet in order to determine what the barriers to use were? And, if so, will the project begin to address some of those issues? Kukafka responded that the interviewers did probe and that some of the information on barriers was presented. Fear of pornography and fraud was actually of higher importance than being able to understand the information. Will the project be able to do something about all the bar- riers? The answer is no. What the project can do is encourage discourse among the participants during which the barriers might emerge and can then be discussed. In terms of such barriers as having to wait in long lines at the library to use the computer or having only limited hours when the library is open, the hope is that the community will begin to build capacity in order to reduce some of those barriers. One of the most interesting comments about the portal was “This is not a website, it’s an action, it is activism.” The portal can assist a ground-up effort and provide the platform for discourse and activism out of which change will occur. On the subject of the Harlem community, a participant said that there are a variety of factors that are not directly addressed by eHealth, such as the social determinants of health, including lower education and lower employment. It seems that people are thinking that eHealth will provide a panacea to bridge the gap in health disparities. But how likely is it that that will really happen? Isn’t it necessary to address the broader social determinants of health and not depend on eHealth bridging the gap? Kukafka responded that empirical evidence will be necessary to deter- mine the degree to which the Harlem approach is successful. It is likely that there will be early adopters, as in the diffusion of any technology, but there will be people who have significantly more barriers to adoption, and it is doubtful that 100 percent of the population will be reached.

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 PAneL  One participant said that while the approaches taken by the VA and Harlem are different, they are related, and it is important to determine which outcomes are desired by the different systems. It appears that VA is looking at the more traditional outcomes such as utilization of services. What outcomes is the Harlem project looking for? Kukafka responded that the HHPC project is conducting a cohort study with the entire user base to look at such things as changes in atti- tudes, beliefs, the way the site is used, the extent to which different func- tions of the system are used, and if the experts are being downloaded or used more than the community generated material. Whether or not the outcomes can be examined depends on funding. In response, the same questioner said that it appears that HHPC has recognized culture, language, and trust as large barriers and is attempt- ing to design a system to inform users and so address those barriers. That is incredibly important, but it also raises such questions as whether it would be better to have a large number of people who engage in discus- sions about flu shots or to have a higher rate of flu vaccination. How can one handle such issues? Kukafka responded that it is hoped that if there is a great deal of discourse around flu vaccination, then flu vaccinations would increase. If that does not happen, however, then it will be impor- tant to examine the discourse in detail, in order to determine what it was about and why it did not lead to increased vaccinations. Ultimately, the HHPC project is looking for both process and outcome measures. Under- standing the process better should identify issues and barriers where new interventions need to be developed, which would then, one hopes, lead to improved outcomes. One participant said that he was intrigued by the juxtaposition of two approaches—one related to the Harlem project and the other related to the VA. A great deal of research has demonstrated that the VA is incredibly effective in eliminating or reducing health disparities and their approach is very innovative, despite the fact that their population is elderly and has, perhaps, low literacy. What is the VA doing that makes it so effective, that results in it getting 15,000 hits a day? Nazi responded that the VA has taken a very comprehensive strategy— not just enacting technology, but also implementing technology in a way that reaches people where they are. Knowing that veterans may not have access to a computer, the VA made sure that computers were placed in every medical center for use by veterans. Data show that while veterans access their personal health record they are also accessing the health education libraries. The most downloaded document on the site is a PDF called 5 Steps For Safer Health Care. Offering value also means offering such programs as online prescrip- tion refills, which was of more importance to veterans than any other

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 HeALtH LiteRACY, eHeALtH, AnD CoMMUniCAtion option. The ACSI data show that the most desired options for online ser- vice now are appointment view followed by appointment scheduling. In response, with the secure messaging initiative, VA is building templates to make it very easy for patients to request appointments online. Other services of importance are the ability to engage in secure messaging and the ability to communicate electronically with patients’ clinicians. Because veterans know about the pilot project, it is important for VA to move quickly to make these features available in the national program. While the technology is fairly easy, it takes time to build the business process and the organizational framework at all the sites. For that reason, VA has taken an incremental approach aimed at ensuring that each step is done correctly before moving to the next service. One participant asked if those who enrolled in the VA Track Health had better health outcomes on average than the members of the VA population who did not enroll. Nazi responded that this is an important research question. Because VA has a research branch, those involved in informatics at VA are pressing for a collaborative effort with VA research- ers to study such questions as: Do personal health records make a dif- ference? Do users have better health outcomes? Are they more highly satisfied? Some research questions are quite complex, such as looking at clini- cal outcomes over time, but there is a great deal of interest in pursuing questions about eHealth. VA is poised to create a research summit to help develop policy frameworks for how research is to be carried out. The personal health record is a new frontier and requires a multidisciplinary stakeholder approach to make sure the infrastructure is in place to sup- port the research. One audience member noted that Nazi said the VA would like, ulti- mately, to give patients access to progress notes and clinical information. Is that information going to be transformed in a way that makes it easily understandable? When one thinks about medical progress notes and how cryptic they might be, will there be an intermediate step to translate the information into something more useful to patients? Nazi responded that, in the pilot, there has been a narrow focus on answering whether this could be done in a secure way, and if it is done, will patients find it to be of value. From the pilot responses, the answer is yes, although one particular piece that translated clinical reminders into patient-friendly wellness reminders appears to be most easily understood by patients. In terms of the broader question, one of the advantages of building the system incrementally is that one can spend time focused on the different pieces. At present, VA is conducting a field test of offer- ing laboratory test results in order to obtain feedback on the system. In some cases it is not possible to change the readability of the material.

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 PAneL  One approach in such situations might be to supplement the data with materials that enrich and support patients’ understanding, for example by providing places to obtain additional information and resources to help patients make decisions. Another approach that VA has worked on in response to an executive order is to offer quality information about delivery of services. Rather than just put forth a report card about quality metrics for a particular facility, clinic, or physician, VA opted to integrate the sharing of quality information into My HealtheVet. The longer-term goal is to move from generalized reports about the quality of a facility to provider-specific reports, which are then translated into something of value to the patient, such as, Is my blood pressure under control? Is my blood sugar controlled? An audience member suggested that as one gains more informa- tion about one’s own personal health record, there may be things in the record that one did not hear when visiting the clinician. Will the VA have a mechanism to allow patients to type questions back to their clinicians for clarification, or is there another way to obtain clarification? Nazi responded that one of the things that emerged from the pilot was that it is very important to patients that the content of their medical record be correct. When that information is released, there must be an easy way for patients to identify things that may need to be corrected. Soon, with one click, a patient will be able to send a secure message to a triage group which then sends it on to the best person to handle the message. The idea that patients should be able to relay information or questions is very interesting and something worth thinking about.

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