Chapter  175:  Barriers and Drivers of Health Information Technology Use for the Elderly, Chronically III, and Underserved

The Level of Use of Interactive Consumer Health IT

In our review of studies having some description on the level of usage of interactive consumer health IT, we found that the data were limited and presented challenges. Measures related to usage varied considerably and offered no apparent standardization of terminology. We also found that the frequency of health IT usage needed to be placed in the context of expected or intended use of the technology.

Some studies reported on the frequency of participant use of technology over time, i.e., mean logins per subjects per month, or allowed an estimation of this measure. Collectively, such studies observed reductions in usage over time. Among studies of web-based interactive systems that offered usage frequency, findings ranged from less than 1 to as many as 27 mean logins per subject month. Empiric observation revealed that more highly used applications offered patient self-management tools and/or peer group support. Studies that compared the use of specific components within an application found the most frequently used functions to be online peer group support, bulletin boards and self-management tools. These applications were tested across a variety of chronic conditions, including diabetes, tobacco use, chronic obstructive lung disease, and congestive heart failure.

The Usefulness and Usability of Interactive Consumer Health IT

Most studies providing information on the usefulness and usability of interactive consumer health IT systems addressed these issues as a secondary component of the study. However, the data indicated that usability played a key role in the use of these systems. Most researchers measured usefulness as part of their usability assessment, finding user perceptions generally rated high, especially for self-management systems. For each type of interactive consumer health information technology, the evidence offered examples that users believed were easy to use as well as those having usability issues. A small number of studies focused on usability testing early in design of the application. In these cases, the goal was to discover and fix usability issues early on in the process. Most issues had to do with graphics clarity and simplicity for older or impaired users.

Barriers to the Use of Interactive Consumer Health IT

The most frequent barrier to consumer use of interactive health IT across studies we examined was the lack of a perceived benefit. In several studies, lack of convenience was an important barrier. Specifically, patients were less likely to use systems requiring access to equipment or technology that did not fit seamlessly into their normal daily routines. Similarly, overly cumbersome data entry was perceived as a barrier. Several studies found that of the level and timeliness of clinician involvement with the system was directly associated with patient use; low clinician participation (when it was expected by the patient) led to low patient use. Technical issues often prevented consistent use of health IT systems, especially among studies conducted on early system prototypes. Finally, although subjects were often provided with the technology for a research trial, several studies identified that costs and access to the technology would serve as barriers to use of health IT beyond the study interval.

Drivers of the Use of Interactive Consumer Health IT

As a counterpoint to the findings above, the most frequent factor associated with increased use of the interactive health IT was the patient's perception of a health benefit. Most of the systems we reviewed were designed for use by patients with a chronic condition, and it was important that patients believed the system was helping them manage their condition. Convenience of access to the interactive technology, and the amount of time required for the intervention, were both factors driving technology use. Interventions found to be beneficial were those that were delivered on devices familiar to patients and used routinely for other purposes. Clinician involvement was a driver in patient use of the technology; furthermore, rapid response from a clinician was shown to increase patient satisfaction. Also, providing content tailored to an individual consumer was shown to increase both system use and satisfaction. Finally, an important driver of technology use relating to older users was the gradual introduction of technology.

Effectiveness of Interactive Consumer Health IT

An important and consistent finding in this review was that systems were effective when they provided a complete feedback loop that included (a) monitoring of patient status; (b) interpretation of this data by comparison to individual treatment goals; (c) adjustment of management according to patient status; (d) timely communication to the patient of tailored recommendations or advice; and (e) repetition of this cycle at appropriate intervals. These “complete loop” interventions were effective across a wide range of conditions, technologies, geographical areas, and patients' socioeconomic status. Systems providing only one or a subset of these functions were less consistently effective. Systems that delivered reminders, alone or based on patient self-monitoring were not consistently effective. Systems offering online peer interaction, alone or as part of multi-component systems, were generally effective in improving intermediate outcomes but not health outcomes. Weak but consistent evidence showed that education or information alone had minimal effect on health outcomes. Online access to a patient view of the clinician's EMR did not improve outcomes, except when combined with tailoring or bi-directional information flow. When asked, in some cases patients expressed a strong preference for human interaction, even with systems that were effective. Many studies showed these systems to be effective in our specific populations of interest: elders, those with chronic illness, members of underserved populations. However, no direct comparisons of interactive health IT between a target population and the general population were identified.

3. a. i. Current Level of Use of Specific Forms of Interactive Consumer Health IT

For frequency of technology usage, there was no standard terminology identified. The most common term used to quantify usage was reported as the number of “logins” by subjects during the study interval. Other terms presented included “hits,” “hit-days,” “logons,” and “transmissions” and were assumed to represent a similar metric. The term “hit-days” was a measure of the number of days a subject used the technology or program, perhaps underestimating the total number of logins if this occurred more than once daily. As previously discussed, frequency of usage by subjects was not appropriate for all types of interactive consumer health IT, such as automated voice messaging or clinic-based applications intended for single-time use.

Seven studies described changes in interactive consumer health IT usage over time, all reporting some degree of overall reduction in usage over time.^{33, 34, 37, 44}–^{46, 51} The metrics used to report trends varied widely, including descriptions of change in usage frequency over time, change in time (e.g., minutes) subjects used the technology, and change in the proportion of subjects who logged in within specified time intervals (e.g., first three months vs. last three months). While varied reporting did not allow direct comparisons among studies, some studies observed dramatic reductions in usage over weeks to months.^{34, 44, 45, 51} Among these studies—which targeted a variety of conditions including heart failure, diabetes, tobacco, and chronic obstructive lung disease—none directly assessed the reasons for usage attrition. Some authors did discuss possible factors playing a role, such as technology inconvenience or reduced motivation over time.

3. a. ii. Primary Uses of Interactive Consumer Health IT

Nine studies reported on the comparative usage of specific components within an interactive consumer health IT application, relative to other components.³⁴–^{37, 46, 51, 53, 54, 56} Studies that presented usage of components reported varied measures, including time (minutes) that subjects used a function, the frequency of functions used during logins, or the percentage of subjects using each function as part of a health IT application.

Seven studies were randomized, controlled trials (RCTs) that examined the use of technology components among experimental group subjects. These studies employed Web-based programs that offered one or more of the following functions, beyond educational information: patient self-monitoring tools (e.g., glucose, weight), tailored self-management tools (e.g., tailored feedback, decision aids), peer group discussion, ask-an-expert (posting questions to a clinical expert), posts to electronic bulletin boards, a patient's view of their provider's electronic medical record (EMR), secure messaging (secure electronic messaging with clinicians and staff), and/or text messaging.^{34, 35, 37, 46, 51, 53, 54} Overall, online peer group discussion and bulletin boards were the most commonly used functions, compared with other functions available within the applications. In two studies, self-management tools³⁴ and ask-an-expert³⁶ were also frequently used functions. In one study with patients having congestive heart failure who were provided access to their EMR, progress notes were most the commonly viewed component, followed by test results.⁵¹

Three cohort studies reported comparative usage of interactive consumer health IT components.^{32, 36, 56} One study showed that self-monitoring tools were used most frequently by patients with head and neck cancer.⁵⁶ A second study, offering Web-based self-management and peer group support, found that subjects used the bulletin board function more frequently than self-management tool functions.³⁶

One study, using a randomized design, tested the effect of adding diabetes self-management and peer support functionality to an information-based application.³⁴ The study compared self-management (tailored online coaching), self-management plus peer support (peer group discussion), and information only (non-tailored). Across 10 months of the study, higher usage was seen in both self-management conditions compared with information-only control, and highest in self-management plus peer support. While usage dropped over the study interval for all groups, highest usage was consistently observed in the condition that included the peer group discussion function.

3. a. iii. Variation of Use According To Type of Interactive Consumer Health IT Application

Among the subset of 16 studies reporting the frequency of IT usage over time or allowing the estimation of this measure, 11 showed participant usage that was equal to or greater than 4.4 logins per subject per month (range, 4.4 to 27). Five studies showed usage to fall under 2.2 mean logins per subject per month (range, 0.7 to 2.2).

Studies observing a higher participant usage pattern (≥ 4.4 logins per subject/month) included the following interactive health IT functions:

• Patient self-monitoring with secure messaging^{31, 33}

• Patient self-monitoring with e-mail alerts⁴⁹

• Peer group discussion with self-management tools³⁴–^{37, 42, 44, 46}

• Peer group discussion with secure messaging⁵⁶

Studies observing a lower usage pattern (≤ 2.2 logins per subject/month) included the following interactive health IT functions:

• Shared EMRs with secure messaging^{28, 32, 51}

• Shared EMRs with quizzes⁴³

• Automated paging and text messaging⁴¹

Studies reporting higher levels of technology usage appeared to have either peer group discussion functions or patient self-monitoring.^{31, 33}–^{37, 42, 44, 46, 49, 54, 56} Studies reporting a lower frequency of interactive consumer health IT use included four with shared access to electronic records with or without secure messaging with clinicians,^{28, 32, 51} and one testing automated paging and text messaging,⁴¹ and one study using a self-monitoring application that also included quizzing subjects.

This grouping was not based on any prior evidence about interactive consumer health IT usage; it was determined by empirical observation only. From a practical standpoint, the higher range of usage corresponds to logging in once per week or more frequently.

The patient conditions for these studies varied widely, and included heart failure, diabetes, cancer, HIV, and lung transplant. One study included only subjects who were medically underserved women with breast cancer.⁵⁴

3. a. iv. Variation of Use According To Settings and Availability of the Interactive Consumer Health IT Tools

The studies included within the scope of this report did not specifically address the question of whether use varied according to setting or availability. Researchers typically provided study participants with the technology, if participants did not have it available. Some studies included participants who had little or no prior computer experience or access to the Internet. However, in one RCT testing Web-based diabetes self-management with or without peer support, 83 percent of subjects recruited into the study “had either no or extremely limited Internet experience prior to the study.”³⁴ This study found high usage of peer group discussion and self-management tools.

3. a. v. Level and Type of Use in Populations of Interest Compared With the General Population

Few studies reported data describing individual-level factors related to usage. Three studies reported subject use of interactive consumer health IT by individual subject demographic factors. One study was an RCT of tobacco treatment medication with or without Web-based self-management and peer group support.³⁷ Analysis showed that technology usage was correlated with age, such that older participants had higher use frequency (p<0.05); this was not exclusively an elder population, however, in that this subgroup included participants aged 46 and older.

One RCT³⁵ of individuals with AIDS/HIV reported that “women used the program 13 percent more than [did] men”, and that “minorities used discussion somewhat less and information tools somewhat more” than did non-minority subjects; these were stated in the discussion, and data supporting these findings were not presented. A third study found that Web site use was associated with being Caucasian and Non-Hispanic, and with having more symptoms and a greater number of clinic visits; this study, however, showed only a trend toward signifcance.³²

No studies were conducted comparing the use of interactive consumer health IT in a subpopulation of interest to a more general population.

3. a. vi. Summary of Findings of the Use of Interactive Consumer Health IT

The evidence on usage of consumer interactive technologies within the scope of this report is limited and presents challenges. Among the studies examined, measurements related to usage were varied and provided little standardization of terminology. Frequency of usage also need be placed in the context of expected or intended use of the technology.

Some studies did report on the frequency of participant use of technology over time (i.e., mean logins per subjects per month), or allowed an estimation of this measure. These applications were tested across a variety of chronic conditions, including diabetes, tobacco use, chronic obstructive lung disease and congestive heart failure. Collectively, such studies observed reductions in usage over time. Among studies of Web-based interactive systems that offered usage frequency, findings ranged from <1 to 27 mean logins per subject month. Empiric observation revealed that higher usage applications offering functions that include patient self-management tools and/or peer group support. Studies that compared the use of specific components within an application found the most frequently used functions to be online peer group support, bulletin boards, and self-management tools.

3. b. i. Usefulness of Various Types of Interactive Consumer Health IT Applications

With the wide mix of types of technology, even within our clusters of technology types, the usefulness of a system clearly depends very much upon how it was implemented. For those studies that measured the subjects' perceived usefulness of the system, the results were generally very positive. For the Web-based interactive self-management systems,^{30, 31, 52, 55, 65, 71, 73, 79, 86, 87, 94, 95, 97}–^{102, 105} in each case the majority of users found the system to be helpful or useful, and often this was true for more than 90 percent of the users. An automated voice response system for calls to patients with diabetes was found to be very or somewhat helpful for 98 percent of the study participants.⁴⁷ For single-use systems, such as the shared decisionmaking system for cancer patients,⁵² usefulness was also generally rated as high (in this case 4.62 out of 5 points). Additionally, efficiency is an aspect of usefulness. Although user efficiency was not often measured explicitly, occasionally perceived efficiency was reported in a study, again with the majority seeing improvements in efficiency by using the system.⁷³ However, some studies detected efficiency problems if users were required to do a significant amount of data entry as part of their self management.^{29, 30} For these systems, users expressed the opinion that the data entry should be automated.

3. b. ii. Usability factors Associated With Various Types of Interactive Consumer Health IT

Although, most users appreciated the usefulness of the systems we reviewed, there were clearly usability problems detected. The most frequent issue had to do with technical problems encountered during the study. These often thwarted the overall participation of subjects in a study. Technical issues consisted of Internet connection interruptions causing the loss of data,^{28, 29} system errors,^{30, 99} and problems with the monitoring devices, including battery issues.³⁰ In addition, sometimes the usability issues had to do with the physical format of the devices. For example, in a medication reminding study, the size and shape of the medication drawers used as part of the overall intervention made it difficult for study participants to small pills.¹⁰⁶

Most studies that addressed usability issues measured the participants' perception of the ease-of-use of the technology. Naturally, this varied even within types of technology, depending on the particular implementation. Most often though, the vast majority of participants (> 90 percent) felt that the technology they were using was understandable and easy to use.^{30, 31, 39, 43, 72, 73, 95}–⁹⁸ Many of these studies also asked about the specific ease-of-use of system components. For example, with an asthma self-management system, 93 percent felt it was easy to record data and view data.³⁰ Gomez et al. found that subjects using their Web-based HIV/AIDS management system reported that the graphics were easily understood.⁷² With a system for schizophrenia education, 93 percent of the subjects found the touch screen interface easy to use, but fewer (56 percent) found the overall system easy-to-use (all felt that it was at least “OK”). In this case, the usability issues arose from the organization of the content, as opposed to the usability issues associated with the more system-level interactions. At least one-third of the study participants encountered a display where they were confused on what to do next.³⁹ Yet there were many studies with similar self-management systems with no apparent usability problems. For example, with one diabetes management system,⁴³ most of the participants felt the system was easy to use, relevant, and useful and would recommend it to others. None of the participants reported needing technical help or had confusion about the system at any point. With a self-management system for congestive heart failure, all participants reported that the system was easy to use.³¹ Similarly, with another diabetes self-management system, all of the participants found the system easy and convenient to use, “with minimal intrusion on their lifestyle.”⁹⁶ Another indicator used to measure usability was the participants' willingness to continue using the system after the conclusion of the study. In this case, all participants reported wanting to continue with the program after the study terminated.

We found similar results for other types of interactive consumer health IT. For example, with a diabetes system that used a two-way automated messaging pager system to send tailored health-related messages to patients,⁴¹ the researchers found that most participants felt there were no problems with the pager (71 percent), enjoyed using the pager (79 percent), and would like to continue using it after the study (68 percent). Patients with bipolar depression were able to input symptoms into a PDA device,⁸⁵ and although novice users reported being intimidated by the program at first, eventually all users felt that the system was easy to use. However, in a tablet PC for HIV+ patients study,⁸⁸ many patients had difficulty making selections by tapping the screen, since that particular implementation did not respond to the users' selections until they lifted the stylus. Many people naturally pressed instead of tapped at first.

An important aspect of the findings from the studies that address the usability of technologies was discovering what system features needed to be modified. One change included revising a patient tutorial for a diabetes home management system and creating a field training program.⁷⁵ Another modification included improving the contrast, use of color, button size, and graphics clarity for an interactive health information system designed for older users.⁹⁴ Often the largest usability changes needed to be made with regard to the data entry screens on Web-based systems,^{29, 30} and in some cases it was the graphic feedback for home monitoring data that needed improvements in clarity.³⁰ Overall, we saw that the usability findings pointed to needing to keep systems simple and free from distracting elements, with an effort toward minimizing jumping from screen to screen. Researchers found that it was important to keep frequently used items on the main Web page with “one-click” access.⁶³

3. b. iii. Usefulness and Usability Issues for Populations of Interest

No studies directly compared differences in usefulness or usability issues for our populations of interest (elderly, chronically ill, and underserved) versus the general population. However, most systems were used by people with chronic illnesses and with a wide range of ages, including the elderly. In addition, some of the studies reporting usability issues were focused on the elderly,⁹⁸ underserved populations⁷⁰ or populations with physical disabilities.^{65, 79, 88} One of the studies that specifically looked at usability issues for an elderly population using an interactive system for obtaining tailored exercise recommendations⁹⁸ showed that age was directly related to the need for more assistance with the technology. A study of low-income inner city asthma patients⁷⁰ required subjects to perform routine spirometry tests and to interact with an electronic symptom diary. In this group, 2/3 of the subjects had never used a computer and nearly half had never used an ATM machine for banking. More than half of the subjects in this study were born outside the US and were non-native English speakers. Even in this group, more than 90 percent found the usability of the intervention “not complicated at all” or “not difficult at all.” However, in another study of an interactive educational system for cancer symptom control, where 26 percent of the subjects had never used a computer, only 71 percent of the subjects felt the system was easy to use.

There were three studies that dealt with usability issues for patients with physical disabilities.^{65, 79, 88} One study⁷⁹ tested a Web-based intervention addressing physical activity for patients with spinal cord injury (33 percent), multiple sclerosis (21 percent) and cerebral palsy (19 percent). The ratings for ease-of-use of the system were still quite high (mean of 4.5 out 5 points). Usability findings from two of the studies addressed issues of eyesight problems. Usability issues were identified in a tablet PC counseling tool for HIV+ patients' medication management.⁸⁸ Patients taking HIV medications frequently have eyesight impairment and the researchers found that some patients were having trouble seeing the content on the screen given the room lighting. They recommended increasing both the text size and the contrast level of the interface. Similarly, patients with diabetes often have vision problems. Interviews with patients with diabetes regarding various designs and interfaces for a cardiovascular risk prevention system showed that subjects had concerns about the clarity of the content on the screen, specifically mentioning that it would be common for people with diabetes to have trouble seeing detail on the screen.⁶⁵

3. b. iv. Summary of Usefulness and Usability Issues

In summary, we found 54 studies that addressed usefulness and usability issues of interactive consumer health IT. Most of these studies addressed usefulness and usability as a secondary component of the study; however, the information collected indicated that usability played a key role in the use of these systems. Most researchers measured usefulness as part of their usability assessment and found that the users' perceived usefulness was generally rated high, especially for the self-management systems. With regard to the ease-of-use of systems, it is important to note that usability in these studies was always evaluated for a single type of system with a particular implementation, making it difficult to make general claims about usability findings. For each type of interactive consumer health information system there were examples of some that the users felt were easy to use and others with usability issues. There were a small number of studies that focused on usability testing early on in system design. In these cases, the goal was to discover and fix usability issues early on in the process. Most issues had to do with graphics clarity and simplicity for older or impaired users.

3. c. i. Lack of Perceived Benefit

The primary barrier to use that was described in studies that addressed this issue was the notion that if the study participants did not perceive that there was a benefit to be derived from using the system they were unlikely to engage with the intervention. This was especially true when there was a significant degree of inconvenience in data entry for the home-based self-management systems. For example, one study found that participants' use of their asthma self-management system suffered when there was no perceptible immediate benefit to outweigh the inconvenience of doing self-management via Internet. Often improvements in asthma control are not perceptible by the patient.⁶³ In their case, the benefits of using an asthma diary were often not recognized immediately. In a diabetes system, there were three types of patients who reported not seeing a benefit to the intervention: (1) study participants who had not experienced the problems yet, (2) those who did not understand the information, and (3) experienced users who felt they already knew the information.⁴³ This last group also included people with well controlled diabetes who felt they did not need assistance. The researchers' conclusion from these findings related to the need to tailor the intervention for these subpopulations.⁴³ Many other interventions we reviewed did tailor their materials based on stages of change and related user model variables.

For other types of interventions, such as a tailored medication reminding system, those study participants who were already doing well with their medications were more likely to report that the intervention was a nuisance and intrusive.¹⁰⁶ In the case of support groups, we found that needing a critical mass in number of participants was often cited a barrier to successful use of the technology. For example, in a support group for diabetes and physical activity, there was a lack of perceived benefit by many participants (66 percent) because of an insufficient number of people actively participating in discussions.⁴⁴

In some cases, the technology was being evaluated in the context of replacing components of face-to-face interventions. For example, a schizophrenia technology intervention was tested with and without sessions with a community psychiatric nurse, as well as a combined intervention.³⁹ Of the people in the combination group, 13 out of 20 subjects preferred the sessions with the nurse, and 7 out of 20 preferred the sessions with the computer. Interestingly, all participants exposed to the community nurse intervention thought that the information provided by the nurse was relevant, but in the group receiving both the nurse and computer information, the good nurse information made the computer information seem less relevant (i.e., more participants in the computer only group found the computer information to be relevant).³⁹

3. c. ii. Technology Intervention Did Not Fit Their Lifestyle

A second type of reported barrier to the use of interactive consumer health IT was the issue of patients finding it difficult to fit the intervention into their everyday lives. In some studies, although patients reported liking the system, they indicated that they would be unlikely to use it long term because it was not easy to integrate into their lifestyle.^{63, 83, 91} One study reported factors that had to do with technical and psychological aspects.⁶³ The issues in this study mainly had to do with the fact that their participants had to collect their monitoring data, write it down on paper prior to computer entry. This meant that participants often waited until the weekend to do the data entry and then would only receive feedback days later. They were not using the system continuously and this prevented the intervention from being more effective. The main point in these types of studies where data entry was a barrier was that monitoring needed to be unobtrusive and automatic. In addition, use of the Internet needed to be integrated into patients' everyday lives. One study found that with reminder systems, it was necessary to consider the out-of home experience and to have a holistic approach to reminding in order to accommodate lifestyle issues.¹⁰⁶ For example, some participants were frustrated by perceiving that they “had to build their life around the monitor/reminder” since it would not turn off when they were gone and they were not able to take the device with them when leaving the home.

3. c. iii. Lack of Trust of the System

Another major barrier to the use of the interactive consumer health IT was the lack of trust of the information provided. Findings showed that unexpected messages or advice that contradicted a patient's experience caused them to disbelieve it and not follow the advice.⁶³ Systems that did not provide an explanation for the recommended action are less likely to have the intended behavior change effect on the users of the system.⁶³ The authors' recommendation based on this finding is to shift from providing automated treatment changes via the system to providing graded alerts on when to contact the clinician.

3. c. iv. Technological Malfunctions

Many studies encountered a wide variety of technical problems.²⁸–^{30, 56, 73, 99} These technical problems represented barriers to successful system use, but were also problematic for the quality of the study. Many times, these technological problems were issues that could have been prevented with better pilot testing of the system prior to deployment, but many times the technological problems were representative of issues that system users might encounter independently of the quality of the health technology.

The most common technological problem encountered in the studies we reviewed was the lack of reliability of patients' Internet connection.²⁸–^{30, 73} As an example, more than half of users had Internet connection issues,³⁰ and in two studies,^{28, 73} system users had connection problems leading to the loss of some of their data. Systems that required batteries, such as the home monitoring systems,^{30, 73} were also prone to having reduced patient use because of problems in keeping the batteries charges. The researchers saw a need to introduce battery checking software into their systems.

Other technological issues encountered in the studies we reviewed included system errors,^{30, 99} incorrect functioning of videos,²⁸ and monitoring device problems.³⁰ In general, many of the technological issues reflected the fact that the papers were reviewed dealt mostly with research systems, as opposed to commercial systems that would presumably be much more robust and reliable. However, the basic issues of Internet connectivity and short battery life are likely to plague future systems as well.

3. c. v. Technology Too Cumbersome

The most consistent issue with many of the self-monitoring systems that required the patients to enter their data into the computer by hand was that this process was cumbersome and took too long.^{29, 30, 101} In many cases, the technology exists to automate this process, but perhaps at a greater cost. As was noted before, some authors also reported that some of their participants had slow and/or intermittent Internet connections, making it cumbersome to use the intervention.⁶³

3. c. vi. Confusion With the Technology and Content

There were two ways in which users' lack of understanding emerged as a barrier to the use of the health IT. The first was based on health literacy and numeracy.^{32, 82, 92, 93, 103} Many patients had difficulty in comprehending the medical jargon in their view of their provider's EMR.³² The participants in this study felt that they could cope with this issue by using dictionaries or other methods, such as asking friends. They preferred this approach to having the material “watered down” or “sugar-coated.”

Other sources of confusion had more to do with the use of the technology. Several studies mentioned lack of experience with computers and with the Internet as a significant barrier.^{56, 69, 77}–^{79, 81}–^{83, 89, 101} For example, one study⁷⁵ found it was necessary to improve their patient tutorial and create a field training program to ensure successful use of the home monitoring diabetes system.

3. c. vii. Specific Barriers With Interactive Reminding Technologies

Some of the barriers to system use were specific to the interactive reminding technologies. Users' reactions to using their 2-way automated message paging system for diabetes care is one example revealed several challenges to providing this service.⁴¹ About 44 percent of the users found the messages to be annoying. Some found the system helpful for a few weeks, until they could anticipate the messages, and others found the messages too overwhelming. One suggestion arising from this work was that it would have been helpful for their messages to have been programmable. They also reported that patients would have liked to have changed the text. A separate barrier to this particular intervention was that the pager didn't work in all locations (i.e., at work or while traveling).⁴¹

3. c. viii. Clinician Factors as Barriers

Our evidence review was limited to considerations of the patient or consumer's use of health IT. However, several of the technological interventions we reviewed required active participation on the part of clinicians. Often these studies mentioned that patients perceived a lack of response and use of the system by physicians. For example, one study showed that if physicians did not examine the system's report then patients (especially those with chronic illnesses) were less satisfied.¹⁰⁹ In this particular study, fewer than half of the physicians looked at the report in front of the patient (49.2 percent) or discussed it with the patient (44.3 percent). Similarly, in a study of patient-provider messaging, monitoring, and email alerts, only 25 percent of the physicians involved used the system.⁵⁶ In this case, the system was not integrated with the physician's information system. Additionally, two investigations reported that physicians were reluctant to introduce the systems into their practice because of time constraints.^{28, 63}

3. c. ix. Cost as a Barrier

Although the interactive consumer health IT applications that we reviewed were designed with the intention to provide quality care in a timely manner that would be less expensive than having a clinician available in person, there were two ways in which cost was mentioned as a barrier to the use of these technologies. The most common was the fact that many patients did not have access to a computer in their homes.^{43, 70, 81}–^{84, 87, 92, 101} This was particularly problematic for low-income populations, in an asthma study with low-income inner city subjects.⁷⁰ Since 2/3 of the subjects had never used a computer, the cost associated with deploying this type of intervention would have to include both the computer hardware as well as computer training. The second factor was more of an artifact of the specific implementation. The protocol for the use of some systems, such as a tailored educational program for patients with schizophrenia,³⁹ required that the patients come to the clinic to use a touch screen computer. The cost associated with bringing patients to the clinic was deemed to be too high for the intervention to be widely accepted. However, the alternative, being a person-to-person visit with the community nurse counselor, was even more expensive. A diabetes intervention also required technical personnel at hospital for technical support.⁷³ Presumably this would be true for many of the systems if they were to be used in routine clinical care.

The reimbursement for the clinical use of the types of technologies we reviewed was also brought up as a barrier to routine use outside of a study situation. For example, one study found that it would be difficult to have physicians routinely use electronic messaging with their patients if they did not receive payment or reimbursement for those interactions.²⁸

3. c. x. Age and Disabilities as Barriers

We only found only two studies of usability and usefulness that compared older and younger users of an interactive consumer health IT systems, both were diabetes interventions.^{47, 69} One study found that younger users were more interested in the technology.⁶⁹ Looking at a wide range of ages using an automated voice response system, one study found that younger patients (less than 55 years of age) were less likely to listen to as many messages, but more likely to want to use the system in the future. Also the younger users more often reported that the diabetes voice system would make them more satisfied with their health care.⁴⁷

In addition, given that most of the health IT interventions reviewed were focused on chronic conditions, many studies we reviewed included a substantial number of elderly participants. For example, one study focused on a low-income elderly disabled population living in a publicly subsidized housing project.⁸² Computer literacy and computer anxiety were determined to be major barriers to subjects' use of the personal health record the researchers were testing. In this group 63 percent had computer literacy problems (needing help in learning to turn the computer on, use a mouse device, etc.) and 58 percent had computer anxiety problems (unwilling to attempt to use the computer). Other barriers identified in this study included cognitive impairment (34 percent) that limited subjects' ability to remember their user name, password and Web URL address; health literacy (29 percent) that caused confusion about the content; and physical impairments (26 percent). The impairments included vision problems that made viewing the screen difficult, and decreased function of arms and hands due to cerebral vascular accidents, arthritis, multiple sclerosis, and Parkinson's disease.⁸² All of these issues made using a computer much more time consuming and difficult. An additional study specifically looked at usability issues with a Web-based system designed to provide tailored exercise recommendations for older users.⁹⁸ Within this study of users over the age of 60, they found a direct relationship between age and increasing need for technical assistance.

3. c. xi. Summary of Barriers to the Use of Interactive Consumer Health It

In summary, we found 53 studies that addressed the barriers to consumer's use of interactive health IT. The most frequently mentioned barrier to consumers' use of the interactive health IT across these studies was a lack of perceived benefit. The lack of convenience was an important barrier in many studies. For example, patients were less likely to use systems that required them to access equipment or technology that did not fit into their normal daily routine, or similarly if the data entry was overly cumbersome. Several studies also found that a lack of clinician involvement was associated with less system use. In addition, due to the fact that many studies were conducted on early prototype systems, technical issues often prevented consistent use of these systems. Finally, although in these research studies patients are generally provided with the technology, several articles mentioned that for use beyond a funded study, the costs and access to the technology would be a barrier.

3. d. i. Perception of Health Benefit

The most general and important driver of the use of interactive consumer health IT was that the user perceived a benefit to using the system. In the following section we will review the evidence for health and quality-of-life outcomes, but here we are making a distinction as to whether the patient actually perceives some benefit. Often with self-management systems there may be long term positive outcomes that are not perceptible to the patient at the time of system use. Some examples of systems where patients did perceive a benefit during system use are listed below. Most of these studies also measured increased use related to the perceived benefits.

• Diabetes: In general, a driver of the use of interactive health IT interventions for patients with diabetes had to do with patients feeling empowered^{77, 83} with an increased sense of security about their health. In a study of a diabetes self-management system, patients felt more confident in adjusting their insulin doses in response to monitoring data feedback.⁹⁶ Similarly, one study showed that the majority of users perceived improved glycemic control, easier treatment changes, better communication with doctor, and better diabetes education.⁷³ Also, participants in a study of a 2-way pager system for diabetes felt they received better health care when using the paging system. In addition, they perceived the messages to be comforting, helpful, convenient and useful. Some reported an additional benefit of reporting their blood glucose values in this way as improving their personal accountability.⁴¹

• Asthma: Patients using an asthma system perceived that keeping an electronic diary helped them manage their disease.⁶³ However, with a pediatric asthma system,¹¹¹ only the caregivers perceived quality-of-life improvements to a significant degree, while in children a similar trend was not statistically significant. Still, we considered this to be a driver of system use because satisfaction on the part of caregivers caring for asthmatic children improves the likelihood that the children will use the system. In this study, the children reported that using the system was fun and like that it helped them remember to take medication, compared with those with a paper diary who sometimes lost it or forgot to enter the data, in addition to reporting that they often forgot to take their medications.¹¹¹ A study of low-income inner city adult patients with asthma revealed that a driver to use of the system was that the technology provided a sense of security (88.2 percent of the patients felt safer while being monitored) and all stated that it was either extremely or very important for them to know that the results were reviewed by clinicians immediately.⁷⁰

• Heart Failure: One study showed that reminders helped heart failure patients to stay on a schedule with noticeable improvements in medication management, diet and exercise, leading them to perceive that they felt better, that their blood pressure was more stable, and they had less worry.¹⁰⁶ These patients also realized that they required less nitroglycerine in the management of their heart failure. In another heart failure system with access to the patient's EMR, the patients perceived improvements in knowledge for self management saw an immediate benefit of having access to the electronic health record for reminding them about their most recent regimen changes, medication doses, and lab results.³² This group also saw an improvement in reassurance (they no longer had to assume “no news is good news” and could check for accuracy of their medical record).³²

• Chronic Obstructive Pulmonary Disease (COPD): Of patients using a self-management system for COPD, 73 percent were either very or completely satisfied with the system.¹¹³ Their primary perceived benefit to using the system was increased access to their health information.

• Osteoarthritis: One intervention¹⁰² using the Web-based tailored feedback and recommendations based on guidelines for osteoarthristis care, showed that most participants felt that using the Website would help them receive better care from their physician (77 percent).

• Hypertension: A study of an interactive voice response phone system for patients with hypertension.⁷¹ A driver to the use of this system was that nearly all of the subjects felt it made them more aware of their condition (95 percent) and most felt that it relieved their worries about the disease (79 percent).

• HIV/AIDS: In a system for HIV/AIDS, the patients perceived that their health was better when using the system, but in addition they reported having a sense of greater control over their situation.⁷²

• Physical Disabilities: One study⁷⁹ of a Web-based system to promote physical activity for patients with physical disabilities (spinal cord injury (33 percent), multiple sclerosis (21 percent), and cerebral palsy (19 percent)) notes that a driver for the use of this system was the patients' perception of increased health and performance, associated with motivational messages.

3. d. ii. Perception of Convenience and Accessibility Benefits

The perceptions of convenience and ease of access were also important drivers to the use of the health IT.^{32, 39, 46, 47, 69, 77, 84, 91, 92, 95, 110} Many patients with chronic conditions who were in support groups found it much more convenient to use the online format. In a study of breast cancer patients, many participants expressed difficulty finding or being able to attend support services in their home communities, and average travel time to receive breast cancer treatment or follow-up was over 1 hour.⁴⁶ Similarly, with an automated voice response phone system for diabetes, patients liked being able to receive the calls at a time and place that was convenient for them.⁴⁷ Also, heart failure patients reported that it was helpful to be able to check lab results and medication dosages while traveling.³² Diabetic patients received tailored recommendations via both Internet and mobile phone, and a driver to use was the convenience of immediate download of information and accessibility on a mobile device.¹¹⁵

An additional perception of convenience was the time required to complete educational sessions. A study discovered that many participants in the schizophrenia tailored education intervention preferred the shorter length of the computer sessions to the longer sessions with the community nurse counselor.³⁹

3. d. iii. Rapid Response From Clinicians

A corollary to convenience as a facilitator of system use has to do with the participation of clinicians in health IT interventions. Active and timely response on the part of health care professionals was seen to be important when it was an expected component of the intervention. For example, one study reported that rapid electronic messaging turnaround and replies by their physicians increased patient satisfaction (the average turnaround time was 48 hrs in this study).²⁸ Similarly, patients receiving tailored printed feedback to share with their provider on smoking cessation and physical activity were more satisfied if the physician examined the report during the office visit.¹⁰⁹

3. d. iv. Benefit of Anonymity for Sensitive Health Topics

We found evidence of a perceived benefit to the use of health IT in the area of anonymity regarding sensitive health problems.^{72, 85, 87}–⁸⁹ For example, the HIV/AIDS technology study patients' appreciated the anonymity of the communications and this appeared to lead to greater perceived control over their condition and increased use of the system.⁷² HIV+ participants also preferred to “discuss” sensitive topics with the computer because it reduced feelings of embarrassment and promoted privacy.⁸⁸ In this study 17 percent of the patients reported being more honest with the computer. Similarly, with a PDA system for bipolar disorder, patients reported preferring to use the tool because it was discrete and not stigmatizing.⁸⁵ Finally, for breast cancer patients using an online support group with the CHESS system, anonymity within the support groups appeared to foster a more equal participation among subjects.⁸⁷

3. d. v. Benefit of Understanding Physicians and the Health Care System

It appears from the studies we reviewed that having a better understanding of the health care system and a better connection with their doctors is important to patients and a driver of system use. A system for heart failure patients provided patients with secure web access to their medical records, a guide to heart failure and a messaging system for communicating with their doctor and sharing information with other doctors.³² The perceived benefits for the patients included: (1) they better understood the doctors' thought processes and decisionmaking, (2) they had a better understanding of the medical care process, leading to the perception of more control, (3) they perceived they could communicate better with the doctor and felt that they had an increased participation in care—a more active role, and (4) they felt they had more of an appreciation for the doctors' skill & expertise.³² Similarly, the HIV/AIDS system study participants perceived that it was beneficial to have access to experts and second opinions.⁷² Finally, in a patient-provider messaging/monitoring and email alert system, 83 percent of the patients felt the system provided a sense of security in being able to contact a health care provider in the hospital and 75 percent felt the system helped them communicate better with their health care providers.⁵⁶

3. d. vi. Deliver Information on Devices Patients Use Every Day

Another clear message about improving the use of interactive consumer health IT is to deliver the messages on devices the patients or consumers use every day. One study found that if the Internet is not part of one's daily life, then SMS (Short Message Service for sending short messages to mobile devices) might work better for immediate feedback systems.⁶³ These researchers suggested using rewards (free SMS units) to provide perceived benefit when the physiological benefit is not obvious to the patient.⁶³ Text messaging was found to be especially appropriate for a younger mobile population. Rodgers et al. used mobile text messaging for smoking cessation intervention for young adults. Their arguments were that the use of cell phones with a young population is “popular, has caché among peers, is age appropriate ... and that the ownership of cell phones is much higher among lower SES groups than computers.” They anticipated that the use of the new multimedia phones will allow them to offer even more sophisticated distracter activities for smoking cessation that will still be low cost.¹¹⁴

3. d. vii. Tailor to Patients' Interest

Several literature reviews have demonstrated the benefits of tailoring health information for patients, both in terms of behavior change and satisfaction.¹¹⁶ In our review, we found similar evidence to support this. With a diabetes system, patients preferred tailored information on several counts: (1) it answered their questions better, (2) it related to their interests and current concerns, (3) it met their comprehension level, (4) was relevant to their family history, and (5) the information was ordered according to importance to them as individuals.⁴³ Additionally, the system had most of the information geared toward newly diagnosed patients, and these were the participants who found the material most helpful. In a tailored versus generic information for diabetes and physical exercise, the participants using the system with tailored information had both greater system use and greater satisfaction with the system.⁴⁴ A diabetes simulation program found that the participants were motivated to download the software because they are interested in how insulin therapy varies with respect to their own circumstances.¹¹⁰ With a similar diabetes system, the participants' ability to view glucose value trends provided confidence for dramatic treatment change. Looking at their own trends allow patients to be able to test insulin dose / snack effects and to develop an understanding of the causal relationships.²⁹

3. d. viii. Patients in Poor Health Benefit More

Interactive consumer health IT systems seem to do better and have greater use when they are offered to patients who are sicker or more compromised, thus feeling the need for additional assistance. For example, in an online support group for women with breast cancer, those with lower perceived health status showed the greatest improvements over time. The intervention was most effective for those who started with greater expression of sadness, anxiety, and negative emotions. The women most recently diagnosed, and experiencing distress, were the most likely to benefit.⁴⁶ In addition, patients with another diabetes system said it would be most useful when they might not be in good control, when there were weather changes, or when they were planning a long journey.²⁹

3. d. ix. Drivers for Older Users - Gradual Introduction of Technology

In the studies that concentrated on older users, the main finding that appeared to drive increased use of the systems was to gradually introduce the new technology. One researcher recommended starting with familiar tools and having a gradual introduction of technology to ensure successful use by older participants.⁹⁴ In addition, that study identified benefits to involving older users in the design process. They also found that using the technology to integrate older users with family caregivers and with society in general drove system use by elders. Similarly, another study reported that gradual introduction of technology worked best, stating that people who already had Internet access were more likely to accept and even want to try the new Web-based technology.²⁸

3. d. x. Summary of the Drivers to the Use of Interactive Consumer Health IT

In summary, we found 60 studies that addressed the drivers and facilitators of consumers' use of health IT. Many of the findings are derived from the set of articles that also discuss barriers. Thus, many of the factors describing the drivers are the converse of the barriers listed in the previous section. The most frequent factor associated with increased use of the interactive consumer health IT was the patient's perception of a health benefit. Most of the systems in this section were designed for use by patients with chronic conditions, and it was important that the patients feel that the system was helping them manage their condition. Convenience in terms of access to the technology and the amount of time required for the intervention was shown to be a factor driving technology use. It was shown to be beneficial to deliver the interventions on devices consumers use every day for other reasons. Again, clinician involvement was a driver to the use of the technology. A rapid response from the clinician was shown to improve patient satisfaction. Also, providing content tailored to an individual consumer was shown to increase both system use and satisfaction. Finally, an important driver of technology use relating to older users was the gradual introduction of technology.

3. e. i. Complete Feedback Loops

A recurring pattern that is apparent in the evidence examined for this report is the effectiveness of systems that provide a complete feedback loop with regular communication between patient and clinician or system. Across a range of medical conditions, IT, geographic areas, and socioeconomic status, we found a consistent pattern of effectiveness of multi-component systems that provide a timely response to information about the current or evolving status of the patient as part of a complete loop of interaction between patient and health professionals. These systems are highly varied and include differing combinations of component functions, but have in common components that enable:

• Monitoring and transmission of data about the current status of the patient, such as daily blood pressure, weight, and symptoms in heart failure patients, or blood glucose, diet, and activity in diabetics.

• Interpretation of this data about current patient status by comparison to previously established individual treatment goals or to published guidelines.

• Adjustment of medications, diet, or provision of information as needed, according to the data received about patient status.

• Timely feedback to the patient of adjustments in medications, diet, self-management education, or support, whether by email, voice messaging, telephone, or other means.

• Repetition of this cycle at the appropriate intervals.

Systems that provide such a complete feedback loop are grouped here according to their intended duration of use:

• 1

  Ongoing chronic disease management systems, intended for indefinite, continuous use in the care of chronic conditions such as diabetes, heart failure, or asthma.

• 2

  Multiple session training or treatment systems, consisting of a finite series of modules that must be completed by the patient, usually over a period of weeks, either to provide training in self-care or as a means of delivering the treatment itself, in the case of some mental health disorders.

• 3

  Single session systems intended for one-time use, often as part of a visit to a health professional, to assist in assessment, decisionmaking, or goal setting.

3. e. ii. Reminders, Alone and With Monitoring

We identified five randomized trials of interactive consumer health IT systems that provided individualized reminders to patients, and these showed inconsistent results. No difference was found in glycated hemoglobin among 25 persons with diabetes receiving automated text pages or e-mail reminders about diet, medications, exercise, etc. compared with 25 controls,⁴¹ although patients had a positive attitude toward the technology. There was improvement in self-efficacy, self-reported adherence, and perceived support, but no difference in glycated hemoglobin among pediatric patients with diabetes receiving daily individualized reminders via mobile phone text (SMS) messages based on previous clinic visit goal-setting; knowledge of diabetes improved equally in intervention and control patients.¹²⁵ Self reported and cotinine-verified quit rates were higher among adult smokers receiving SMS text reminder messages over 6 months compared with controls receiving periodic thank you messages.¹¹⁴ Adherence to medications and monitoring of peak flow, missed school days, urgent care calls, and days with severe obstruction were all improved among 66 urban children with asthma using a telephone-based monitoring and reminding device, compared with 68 controls using a paper-based diary.¹²⁸ HIV/AIDS patients had nonsignificant increase in medication adherence (though a significant increase in the subgroup with impaired memory), lower HIV RNA load, and nonsignificant increase in CD4 counts 24 weeks after randomization to use of an automated reminding device.¹¹⁷

3. e. iii. Monitoring Alone

Because this report is focused on interactive health IT for use by patients or consumers, we excluded reports of surveillance systems that automatically transmit physiologic data such as heart rhythm to providers without direct participation by the patient. Monitoring by the patient was but one component of the multi-functional interactive consumer health IT described above under Complete Feedback Loops. Three reports that we identified in our search provide some evidence on the effect of consumer health IT for monitoring alone, and the results are inconsistent. As mentioned above, a randomized trial of patients with obstructive sleep apnea using daily monitoring of CPAP use and symptoms, without feedback or other interaction, found no change in functional status or CPAP use,¹⁰⁷ suggesting no benefit of monitoring alone. On the other hand weight loss was correlated with adherence to monitoring, which overall was poor in a case control study of overweight adults using a handheld device to monitor calorie intake and weight.¹⁵² Finally, control group heart failure patients provided with a scale and weight log had improvement in self care and quality of life equal to that of intervention patients with a specialized device for transmitting daily weights, suggesting that monitoring alone may have an effect.¹⁰⁶

3. e. iv. Peer Interaction

We identified eight reports of studies of peer interaction in online forums or discussion groups, four concerned with peer interaction alone^{34, 121, 141, 151} and four in which peer interaction is one element in a complex, multi-component system.^{42, 46, 53, 129}

Peer interaction alone. We found three randomized trials that suggest that social and personal outcomes such as peer support and self efficacy are improved by interactive consumer health IT systems providing peer support. Peer interaction in an online forum among adults with diabetes increased perceived social support more than interaction with a Web-based health professional, or Web-based information access alone.¹²¹ Peer support services among persons with diabetes increased perceived peer support at 10 months, compared with subjects receiving automated Internet services alone or regular communication with a professional health coach.³⁴ Measures of depression, stress, and post-traumatic stress disorder symptoms were improved among 36 women with breast cancer involved in a Web-based, structured breast cancer social support group, actively moderated by a mental health professional though no difference was found in other behavior, attitude, or anxiety measures.¹⁴¹

Peer interaction in multi-component systems. We found moderate, inconsistent evidence in three randomized trials and one correlation study that social and personal outcomes such as peer support and self efficacy are improved by interactive consumer health IT systems that provide peer support components as part of a complex, multi-component system. A randomized trial of HIV/AIDS patients using a complex multi-component system including information, decision aids, expert consultation, and peer support reported higher quality of life and lower utilization of health services during and after a 3 to 6 month trial.¹²⁹ Though some services were used more heavily than others, it could not be determined from the available data which service or combination of services were responsible for the effects, but peer communication services were among the most heavily used. One correlation study of 231 breast cancer patients using a multi-component system including information, decision aids, expert consultation, and peer support found that information competence correlated with use of information and interactive services but not with communication or expert services.⁵³ A randomized trial of patients with chronic diseases receiving 6 weeks of peer-moderated Web-based training regarding diet, exercise, symptom management, medication use, and communication, along with online forum had no change in global health, illness intrusiveness, disability, aerobic exercise, or utilization, but did have improvements in pain, dyspnea, health distress, fatigue, and stretching exercises.⁴² Women with breast cancer using self-guided coping training combined with peer support bulletin board, resource directory, library, and art and poetry repository had no change in health-related quality of life.⁴⁶

3. e. v. Education or Information Alone

As described in the Methods, we excluded general-purpose Internet sites that provide information for the general public without tailoring, individualization, or direct patient interaction. We found one report that education alone impacts knowledge, and five reports that provide weak but consistent evidence that outcomes are not affected by systems that provide education alone. Children with asthma had improvement in some measures of knowledge about self-management, and possibly in self-efficacy, using an interactive CD-ROM game with role-playing and education.¹³⁸ Peer support was not affected in adults with diabetes in the control group provided with information alone, compared with interactions with health professionals or peers through an online forum.¹²¹ Hypertension control did not improve in the control group receiving education and a blood pressure monitor compared with the monitoring and feedback intervention.¹²⁷ Teenagers in the control group receiving asthma education using generic asthma Websites were less likely to complete all four sessions and less likely to improve health-related behaviors than were those in the group receiving tailored education.¹³⁰ Users of a telephone-based cancer information service (controls) had less new knowledge and knowledge of their condition of interest than did users of an instant messaging based cancer information service, although baseline differences in groups were significant and this could simply be different populations of users.¹⁵³ Adult diabetics in the control group receiving educational materials alone did not have reduction in glycated hemoglobin and fasting blood glucose or increase in physical activity found in the intervention group using physical activity monitoring, feedback, education, and stage-appropriate prescription, including weekly nurse contacts to monitor progress and adjust recommendations.¹³¹

3. e. vi. Access to EMR Data and Secure Email System

We found two studies that provide weak evidence that online access to the clinician's EMR and optional secure email with clinicians does not by itself improve outcomes, except when combined with tailoring or more bidirectional information. Hypertension patients in a control group receiving online access to their EMR and the option of e-mail with clinicians did not improve their degree of hypertension control and showed limited actual use of the system, compared with the intervention group patients.¹²⁷ Heart failure patients in the control group with online access to the EMR and the option of e-mail with clinicians had improved ‘general adherence,’ but more ED visits, more clinic contacts, and no difference in self efficacy, health status, medication adherence, hospitalizations, clinic visits, or deaths.⁵¹

3. e. vii. Web-based Assessment With Recommendations

Our search retrieved one report of the outcomes of Web-based assessment and recommendations. In a randomized trial of in adults with knee osteoarthritis, satisfaction with prior care was not reduced when patients used a Website to self assess their condition and obtain with recommendations for care, compared with controls.¹⁰²

3. e. viii. Systems May Not Be for Everyone

Of the studies concerned with the effect of interactive consumer health IT on outcomes, patients in six demonstrated or stated a preference not to use the technology. These included (a) asthma patients who stated a preference for and had higher adherence with paper logs;³⁰ (b) obese patients of whom 44 percent did not prefer a PDA to a paper-based diary for monitoring;¹⁵² (c) patients with schizophrenia, of whom those given nurse-based education showed more improvement in mental state at the end of the sessions, and who on the whole were more satisfied with the nurse-based education;³⁹ and (d) children with asthma who used paper-based diaries twice as much as Web-based diaries in a study using video monitoring and feedback.¹⁴⁴ Among persons with depression adherence was higher with case manager reminding than with automated reminding.¹⁴⁹ Finally, problem drinkers and smokers in a primary care setting evaluated a brief tailored video doctor intervention favorably, but “Despite this overall positive response to the program, 72 percent of participants said they would be more comfortable answering questions about personal health from a ‘real doctor’ compared with a video doctor and 71 percent said they believe a ‘real doctor’ would do a better job of offering patients recommendations about wellness and healthy living than would a video doctor.”⁹⁵

3. e. ix. Summary of the Effectiveness of Interactive Consumer Health IT

In summary, we reviewed 74 studies that reported the effect of interactive consumer health IT on health outcomes or health care process measures relevant to Key Question 5. The most important and consistent finding of this review was that systems were effective when they provided a complete feedback loop that included (a) monitoring and transmission of patient status; (b) interpretation of this data by comparison with previously established individual treatment goals or published guidelines; (c) adjustment of medications, diet, or information according to patient status; (d) timely communication back to the patient with tailored recommendations or advice; and (e) repetition of this cycle at appropriate intervals. These ‘complete loop’ interventions were effective across a wide range of medical conditions, monitoring and communication technologies, geographical areas, and patients' socioeconomic status.

Interactive consumer health IT that provided only one or a subset of these functions were less consistently effective. Systems that provided reminders, alone or based on monitoring, were less consistently effective. Systems that provided peer interaction, alone or as part of multi-component systems, were generally effective for improving intermediate outcomes but not for health outcomes. Weak but consistent evidence showed that education or information alone had minimal effect on health outcomes. Online access to data in the clinicians' EMR and optional e-mail with clinicians did not by itself improve outcomes, except when combined with tailoring or more bidirectional information flow.

When asked, in some cases patients sometimes expressed a strong preference for human interaction, even with systems that were effective. Many studies showed these systems to be effective in specific populations of interest: elders, those with chronic illness, members of underserved populations, but our search identified no direct comparisons of outcomes among subpopulations or between a target population and the general population.

3. f. i. African-American Population

3. f. ii. Rural Population

There were a total of 9 studies that concentrated on rural underserved areas.^{36, 53, 54, 60, 75, 146, 151, 156, 161} Of these, five^{36, 54, 60, 151, 156} were based wholly on rural areas whereas the remaining four^{53, 75, 146, 161} examined a combination of small city, rural, and urban settings.

The Ferrer-Roca 2004 study reported that 71 percent of the intervention subjects and 92 percent of the control subjects thought that the system was easy to use whereas 50 percent of the intervention subjects and 88 percent of the control subjects had difficulties in accessing the system (p<0.01). Besides these relevant findings, the same study also showed that 86 percent of the intervention subjects and 40 percent of the control subjects would recommend the site (p<0.01) whereas 33 percent of the intervention subjects and 12 percent of the control subjects did not find the system useful and efficient (p<0.05).⁶⁰

Interestingly, the Kaufman 2003 study based on rural upstate New York and Hispanic New York City populations, classified usability concerns into system barriers and cognitive/skill barriers. Some of the system barriers documented in this study were problematic widgets, small fonts, bad spacing, complex tasks, screen transitions, and system stability. The cognitive/skill barriers included mouse-keyboard skill, mental model, literacy, and numeracy. Anxiety, self-efficacy, and motivation were also found to be important issues surrounding health IT use.⁷⁵

3. f. iii. Underserved Population

One study was based in public health clinics with one provider for 10 clinic sites and 63.3 percent of the subjects having some chronic illness. A majority of the study subjects (81.1 percent) felt that the computer was easy to use whereas 12 percent asked for help and 24.8 percent had privacy concerns regarding use of the computer. Satisfaction with provider visit was significantly related to having a chronic condition, being a nonsmoker, and having a provider who reviewed the report with the patient.¹⁰⁹ In addition, investigators specifically looked at the barriers to the use of personal health records by low-income elderly people living in a publicly subsidized housing project.⁸² They found that computer literacy and computer anxiety were the major barriers to use in this population, with 63 percent of the group having problems with computer literacy and 58 percent having problems with computer anxiety. Barriers due to cognitive impairment (34 percent), health literacy (29 percent), and physical impairments (26 percent) were also significant factors affecting the use of the personal health records. In a study of low-income women who smoked,⁹⁹ the factors associated with increased satisfaction and system use were readiness-to-change, minority, and a greater than high-school level of education. Finally, one study tested a computer tool for monitoring asthma symptoms and spirometry values in a low-income inner city area where 2/3 of the subjects had never used a computer and nearly half had never used an ATM machine for banking.⁷⁰ In addition, the majority of the subjects were non-native English speakers. Their primary barriers to the use of the asthma monitoring system were a lack of computer experience, limited availability of instructional assistance for both the computer and the intervention, and the cost associated with providing the system beyond the study period.

3. f. iv. Elderly Population

We found 13 studies with study subjects over the age of 65 years.^{36, 38, 45, 47, 62, 69, 75, 82, 98, 113, 119, 120, 162} In two of the studies, the elderly population was examined as a subgroup.^{38, 62} Six studies were conducted on subjects aged 65 years and above^{36, 82, 119, 120, 162} and the remaining four had subjects with mean age ranging from 69.1 to 73.7 years.^{45, 75, 98, 113} One study found that younger users were more interested in their diabetes system.⁶⁹ Another found that their younger patients with diabetes (less than 55 years of age) were less likely to listen to as many messages, but more likely to want to use the system in the future.⁴⁷ With a physical exercise system specifically designed for elders, researchers found that even within an older group, age was directly related to increased need for assistance with the technology. Then as mentioned above, a study with low-income elderly participants using a personal health record found computer literacy and computer anxiety to be the major barriers to use of the system.⁸²