Summary of Results
The Project's initial activities focused on capturing the health information needs (or requirements) of people with sensory and physical disabilities through group interviews and a Web-based survey. It may seem obvious that people with disabilities (visual, physical, and hearing) desire and need PHR systems that are fully accessible. What may not be as obvious is that frequently people with disabilities, due to their deep level of experience with healthcare, have a wealth of detailed and sophisticated ideas about how PHRs can be designed so that consumers can be fully engaged in managing their own health. The main motivation behind these ideas comes from a simple goal important to people with disabilities -- to achieve and maintain independence in every aspect of life including education, employment, housing, mobility and transportation, social interaction and retirement. Perhaps the most important factor in achieving and maintaining independence is health.
The second phase of the Project's activities focused on assessing the current state of PHR accessibility, functionality, and usability. PHR systems are being developed to provide people with access to their own health information, communication with providers, and tools and education resources to help them be more effectively engaged in managing their own health. These systems are relatively new to the marketplace and are in a constant state of change. While the latest products do provide useful information and features, most have yet to provide the level of functionality desired by people with disabilities, as documented in this study. Other research suggests that mainstream consumers also desire greater functionality. There is a plethora of literature and commentary on the need for improved usability in health information technology (HIT) for providers. PHR systems appear to be more carefully designed than EMR systems used by healthcare professionals, but experience suggests that HIT vendors have yet to fully adopt the user-centered methodologies employed in many successful business and consumer software products and Web sites. Software and Web-site accessibility standards have been commonly available for at least a decade, but these common practices have yet to be adopted by most HIT vendors who are only beginning to understand and incorporate accessibility into their development processes.
In the first year of this three-year project, we carried out integrated activities:
- Group interviews
- Web-based survey
- Evaluation of three existing PHR systems for: 1) accessibility, 2) functionality, and 3) usability
Each of the three activities is summarized below. A full overview and description of methods, results and resources are provided in dedicated sections for each activity.
Activity 1: Group Interviews
Project staff performed two group interviews with a total of 16 people with disabilities. The interviews were designed to develop an understanding of how people with disabilities interact with their health information to support their goals. Interview participants consistently described their most important goals as achieving and maintaining the highest level of independence, which encompasses education, employment, housing, mobility and transportation, retirement and social interaction. They then described a fundamental relationship between managing health and independence.
We then asked the participants to describe their healthcare experiences and to share ideas on how they could work more effectively in managing their own health. They provided detailed and sophisticated concepts on how information systems could help them in every aspect of managing their health. The results of these interviews led to the creation of a set of 22 requirements, each representing health information tasks. These requirements will serve as the foundation for our continuing work.
Though the requirements provided by participants were rich in detail and often combined multiple aspects of functionality and information access, they can be broadly categorized as follows:
- Access to information
- Control of their health information
- Communication with and between their healthcare professionals
- Trusted sources for health education
- Insurance/financial management
- Medical equipment management
See the Group Interviews section for a full description of our methods and results for this activity.
Activity 2: Web-based Survey
Project staff developed a web-based survey to validate and further explore our interview findings with a larger pool of people with disabilities. The survey was built primarily around the 22 requirements derived from the group interviews. In the survey, participants rated each task in terms of importance to managing their health (Very important, Important, Neutral, Unimportant and Very unimportant) and their current level of satisfaction in being able to achieve/perform that task (Very satisfied, Satisfied, Neutral, Dissatisfied and Very dissatisfied). The survey also included questions on disabilities, access to and use of technology and assistive technology, and two open-ended comment fields.
One hundred fifty (150) people with a variety of disabilities took the survey. Participants were recruited using outreach to people with the range of disabilities. All 22 requirements were rated as important (98% to 72% of participants rated each requirement as either Very important or Important). In contrast, all of the requirements were rated low in current satisfaction (57% to 18% of participants rated each as either Very satisfied or Satisfied). In addition, we analyzed these ratings by the different participant disabilities and, with minor exceptions, there was no significant difference attributable to disability.
See the Web-based Survey section for a full description of our methods and results for this activity.
Activity 3: Assessment of Three PHR Systems
Activity 3 focused on assessing the current state of PHR systems in terms of accessibility, functionality and usability. Our initial plan was to perform baseline usability testing of PHR systems with people with disabilities. Unlike a focus group where only subjective data is collected, a usability test produces a diverse set of objective and subjective results including the ability of participants to complete real-world tasks, errors committed, time-on-task and subjective ratings of participant satisfaction with various attributes of the site. Usability testing PHRs with people with disabilities can provide results assessing not just usability, but functionality and accessibility as well.
To perform this type of detailed assessment the Project required access to systems that could be configured for user testing. A number of PHR vendors were approached to participate in these activities. Unfortunately Project staff were unable to secure participation from vendors, even though it was stressed that involvement would be anonymous and that the primary goal was discovery and education, not a critical review of any single vendor or system.
Without access to test systems, the Project performed a less formal review of three PHR systems used by project team members in managing their own health. We selected systems from three market segments:
- A hospital PHR: Integrated with an EMR used by a large hospital or health system
- An ambulatory PHR: Integrated with an EMR used by an outpatient clinic or practice
- A consumer PHR: A web-based system freely available to consumers, not directly integrated with a healthcare provider, but with features supporting both import and export of patient data using established interoperability standards.
Overall, the assessment provided interesting contrasts. For example, the hospital PHR was the least functional and least usable, yet was the most accessible. Meanwhile the ambulatory PHR was the most functional and most usable, yet failed to meet basic accessibility standards. The consumer PHR was quite usable despite failing to meet accessibility criteria, and failed one crucial accessibility requirement: the entry of dates by people with visual and/or physical disabilities, a critical action required by almost every task managed by the system.
The accessibility problems found in these systems could have been avoided and can be repaired with relative simplicity, if the developers were more cognizant of accessibility guidelines and techniques. In terms of functionality, none of the systems approached the detailed and comprehensive health tasks described by our interview subjects. The usability assessment revealed a number of important issues in each system which impacts basic system navigation, information discovery and support for achieving common health-related tasks.
See the Expert Assessments section for a full description of the methods and results for these activities.
As with all research, there are limitations in the approach taken by this project. These include a lack of deaf or hard-of-hearing participants in the first round of focus groups, though they were represented in the larger survey sample. The focus groups and survey had relatively few participants who are residents of long-term care facilities, though the ongoing collaboration with Inglis provides this perspective in other ways. Because the focus group was recruited using information technology, as well as by word of mouth, and because the survey was carried out online, Project participants may be more experienced with technology and with accessibility issues in technology than the average community member. The survey did not ask whether participants currently use a PHR and may have asked them for their satisfaction with health care tasks they do not currently perform.
In Activity Three, project staff performed a heuristic review and gap analysis of three PHR systems. Choosing a limited pool of tools to review is necessarily less complete than might be ideal, but was necessary due to a number of practical barriers. Any given study can only analyze a sampling of tools, and in this case the project was further limited by a lack of collaboration from any of the PHR tool vendors. Demonstration accounts were requested, but none of the vendors agreed to participate and thus the project was limited to PHRs available to staff in their professional or personal lives. For this reason, we could not perform any user testing or a larger-scale usability review.
This project represents one of the first in-depth examinations of the specific needs and interests of people with disabilities when addressing a variety of health information technology implementations. This summary, and the detailed report which accompanies it, establishes the need for a set of enforceable national health information technology policies that address the existing gaps and the future opportunities that a more inclusive electronic and personal health record system would provide -- to all consumers.
National health care policy does focus on eliminating "disparities" in access to health care by certain populations as an important goal. Health information technologies are looked to for solutions to reduce disparities and while this report doesn't attempt to document gaps in provision of healthcare for people with disabilities, if health IT is considered a solution, it must be made fully accessible to and usable by the groups studied in this project.
Existing surveys on the healthcare information preferences of the general population show enthusiasm for the concept of PHRs, though not quite the level of importance our participants indicated. For example, “Consumers and Health Information Technology: A National Survey” found that more than half of adults are “interested in using online applications to track health-related factors,” compared to 76% of participants in our survey who rated the comparable statement, “Having access to trusted medical information or tools to help you manage your health” as being Very Important or Important. In the National Survey, of those who did not have a PHR, 40% expressed interest in using one, and 50% were interested in having a PHR to help them manage the care of another person for whom they provide care. Among those currently using a PHR, the National Survey found that 64% found that correcting information in one's own health record was a useful feature, the highest rating for any feature included in the survey. Seventy-two percent of our participants indicated that correcting errors was important, although that was actually one of the lower rated features, since at least 72% of our survey participants rated each of the proposed tasks as important. Interestingly, the National Survey shows that PHR users are not taking advantage of many of the features offered. Between 29% and 49% of those surveyed who had a PHR had not tried each of the tasks included in the National Survey.
The National Survey found that although higher-income individuals are the most likely to have used a PHR, it is lower-income adults, those with chronic conditions, such as some people with disabilities, and those without a college degree who are more likely to benefit from using a PHR. It makes sense, then, that the participants in our survey were very interested in having a PHR to help them with many different healthcare tasks – they are likely to have better health if they do.
People with disabilities consume healthcare at greater rates than the general population and, due to higher levels of exposure to our nation's healthcare systems, have shown that they are experienced and sophisticated users. Migration to electronic record-keeping will only cause greater disparities if full inclusion is not embedded in policy, regulations, implementations and the products and services being proliferated, with support from taxpayer dollars.
 Sixty-seven percent of the National Survey participants indicated they had not used a PHR to keep track of their child's health information, such as immunizations. But since not all participants had children, presumably, that data point is less reliable than the four others for which 49% had not tried the task.
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