As noted above, there is no research that looks at underserved populations as a whole and assesses use of patient-facing health IT applications such as PHRs, health kiosks or SMS-based messaging to generate evidence on the prevalence of use or attitudes towards these technologies among underserved Americans. However, there are data that can be used as proxies to assess the extent to which these technologies are accessible to the underserved and the likelihood that they will be adopted in the near future. These proxies include evidence regarding access to and use of information technology and communications technologies by groups represented among the underserved generally and in the context of health in particular. We explore available evidence on these questions below.
Some differences persist between underserved populations and the broader population with regard to internet usage and online health information seeking behavior. While current estimates of Internet usage suggest that more than half of individuals in all income and racial and ethnic groups have access to the Internet and use it on a consistent basis, there is still evidence that some racial and ethnic minorities as well as lower income individuals use the Internet in lower proportions compared to the general population.18 Additionally, urban and suburban residents are more likely than rural residents to use the Internet regularly, with 77 percent of urban and suburban residents reporting usage compared with 64 percent of rural residents in 2006.19 Thus, it is reasonable to conclude that the underserved are less likely than others to have access to the Internet and, if they have access, use it on a less frequent basis than others.
There is also evidence that those with a longer history of Internet use and who visit the doctor regularly are more likely than others to go online to access information on health.20 Again, this trend suggests that the underserved, may be less likely than others to use the Internet as a tool for improving their health or health care as they are disproportionately “new” users of the Internet. However, it is important to note that recent research by both the Pew Internet and the American Life Project and the National Cancer Institutes National Health Information Trends Survey (HINTS) suggests that, among the group of individuals who are Internet users, income and education are not associated with use of the Internet for communicating with providers or seeking health related information.21 22
Because the model for most patient-facing health IT applications involves use of the Internet as a major conduit for accessing, exchanging and maintaining information relevant to the health and health care of a an individual or family, many of these technologies may be less useful for underserved Americans compared to other groups.23 While this may signal the importance of increasing general Internet access and usage among the underserved population, there is also evidence that Internet usage alone may not lead to adoption of patient-facing health IT applications among the underserved.24 As such, developers of patient-facing health IT are increasingly looking to applications built on other platforms to meet the same objectives of giving patients access to the “right information at the right time” to make good decisions regarding their health. For example, there is increased attention to the potential of building health interventions around SMS or “text messages” via cell phones and PDAs. These interventions are meant to support maintenance of a healthy lifestyle by initiating reminders and alerts to patients or sharing test results and instructions with patients and there is some evidence, particularly from the developing world, that cell phones represent a cost effective medium for transferring critical health and health care messages to an underserved population.25 26
Even though patient facing health IT applications are in early stages of adoption and usage, there are many targeted applications that have been developed, implemented and even evaluated on a small scale. In the ODPHP report referenced above, the authors identified and reviewed 40 separate “consumer e-Health tools” ranging from informational websites to PHRs with a vast array of functions. Selected examples of patient-facing health IT that are specifically targeted to underserved populations are reviewed below along with evidence regarding their success.
PHRs for migrant workers. 27 MiVIA, a PHR designed for migrant, Spanish-speaking populations in California, is web-based tool that allows for documentation of clinical visits, health conditions, allergies, medications and other information critical to maintaining continuity of care. Importantly, the tool also provides its target audience with other valuable services including a picture ID, a stable email address, access to Medline and provider websites and emergency ID information and is set up to allow access not only to the individual patient but also family and surrogates.
Finally, there is a provider view where clinicians are allowed to populate, view and update data on patients they are treating based on a specific episode of care. While we found no published independent evaluation of MiVIA, anecdotal information and internally conducted assessments suggest that a significant percentage of individuals signed up for and have accounts with MiVIA use it regularly. Additionally, clinicians report that use of MiVIA has dramatically improved their ability to provide effective health care to this highly mobile population.
Implementers of MiVIA note the importance of not simply making the tool available and publicizing it, but providing comprehensive education and support to assist individuals with every facet of using the application effectively. This included providing basic training on computer and Internet usage, providing information regarding locations where clients could access computers with Internet connections, as well as extensive repetitive training on the use of the application itself. Support and training are provided by “promoters de salud” or community health workers who are imbedded among the migrant workers and are able to conduct the training in a culturally appropriate manner using language that is familiar to clients. While MiVIA started as a local collaborative effort between labor and health care providers in Sonoma County California, it has expanded in recent years to other migrant farm communities on the West Coast and is being touted as a an optimal PHR solution for homeless individuals, children and others.
Online education and support systems for cancer patients.28 29 While MiVIA is an example of a relatively broad based PHR that is targeted to a specific demographic population regardless of their individual health status or needs, many patient facing health IT applications focus on providing targeted functionality to individuals who have similar health and health care characteristics. One such example is the Comprehensive Health Enhancement Support System (CHESS) developed by the University of Wisconsin and the Cancer Information Service (CIS) which is part of the National Institutes of Health’s (NIH), National Cancer Institute (NCI). CHESS is an online system that provides users with 11 services designed to improve quality of life for women diagnosed with breast cancer.
These include what are referred to as “information services” such as a static “Q&A” section; a library of reference articles on breast cancer topics; and resource guides on topics such as selecting providers, resource directories and links to other useful sites. In addition, the system offers “support services” allowing users to ask direct questions to clinical experts and gain emotional support by viewing text and video accounts from other cancer patients discussing how they coped with the disease. And, finally, it provides “decision services” that allow users to take emotional status assessments and receive tailored advice on coping, and use online health charts to track their health status. These health charts also direct users to information on their own specific health concerns and decision aids that help identify options, assign values, and elucidate potential consequences associated with key treatment and lifestyle decisions.
Recently published literature on the system demonstrates that CHESS is effective in improving social support, comfort with their doctors and the care they are receiving, information competence and quality of life among women with cancer. Research also suggests that CHESS is particularly effective on these measures for women considered “disadvantaged” based on income and insurance status because these individuals are the ones that are most likely to lack any resources in the absence of having access to a system such as CHESS.
In a subsequent study, researchers assessed the relative effectiveness of different approaches to disseminating and encouraging take up of CHESS among underserved women and found that while referrals from hospitals and doctors were effective in encouraging underserved women to make use of CHESS, different approaches were important for different communities. For example, they found that publicizing CHESS through radio advertisements was more effective among black women compared to others. They also demonstrated the benefits of extensive in person training for underserved women, not only on navigating and using CHESS, but more basic skills around use of computers and the Internet.
Using health kiosks.30 31 Standalone health kiosks offer some of the same functionality of PHRs and online support systems, but combine computer hardware and software in a single unit. This combination helps to address issues surrounding computer and internet access among some underserved groups. Additionally, physically placing kiosks in targeted locations (such as physician offices or health centers) could allow trained health assistants to assist users when needed. Hardware and software specifications also allow kiosk designers to limit internet and data access to a greater degree than would be possible in a home web-based system. In one pilot implementation among Australian aboriginals, health kiosks served as a first step toward greater health IT familiarity. The kiosks helped to address the connectivity and hardware issues facing those with the most limited experience with and access to new technologies.
Closer to home, a project initiated by the Duke University Medical Center tested the potential impact of kiosks to address the needs for undeserved residents in North Carolina32. Duke created a cluster of nine health kiosks in three counties in the state. DERICKs (Durham e-Health Resource Information Center Kiosks) are located in community health centers, medical centers, local departments of social service and emergency departments. The kiosks are used to help patients identify and overcome personal barriers to accessing care (e.g. transportation issues may lead the kiosk to recommend contacting a local transportation agency). To that end, the kiosk asks a series of preliminary questions to gauge users’ language preferences, education and literacy levels and levels of computer literacy. The responses to these questions help to tailor the questions related to access later in the kiosk application. All kiosk text is available in both English and Spanish and videos are available to walk users through all steps in the process. Users are also able to print out pamphlets via a built-in printer. These pamphlets document specific resources and provide customized guidance to help overcome barriers to better health. To date, the average DERICK user prints out three pamphlets.
While anyone can use DERICKs, they offer additional functionality for Medicaid beneficiaries. DERICK allows users to enter their Medicaid ID numbers. DERICK documents beneficiaries’ barriers and transmits them electronically to their assigned case managers. This provides another point of access to the social service safety net for beneficiaries who may not have time to update their case managers after every ED or primary care visit. Data gathered through kiosks are transmitted through a local HIE, COACH (Community-Oriented Approach to Coordinated Healthcare). This connectivity allows other local providers to access information gathered via DERICK. While specific details remain unclear, Medicaid beneficiaries may be able to access medical records using kiosks in the future.
Others in the field have expressed greater skepticism toward the use of health kiosks. While customization for targeted populations is a clear benefit for underserved groups, little has been done to clarify what such changes would look like. Additionally, some research indicates that any benefit to the low running costs of health kiosks would be negated as health kiosk user satisfaction generally wanes over time. High initial costs suggest that health kiosks could amount to an expensive novelty for underserved communities.
Use of text messaging system. One emerging set of interventions aimed at improving the health of the undeserved through use of health IT takes advantage of wide adoption of cell phones that use SMS technologies to enable text messaging of health content directly to specific targeted populations. One of the several innovative projects initiated by the Robert Wood Johnson Foundation (RWJF) as part of their Project Health Design PHR initiative takes advantage of the fact that some populations making up the underserved are more likely to have cell phones than regular access to personal computers or laptops. For this initiative, RWJF developed the prototype for a system that would allow patients with heart disease to report on their status on a daily basis and then receive tailored information regarding recommended therapies and behaviors for that day.33
This project based at the University of Rochester aims at developing a prototype portable digital assistant with more functionality than the vast majority of cell phones (e.g., sophisticated speech recognition). It does, however, reflect an important opportunity for use of cell phone based text messaging to allow for bi-directional communication. A similar Project Health Design project looks specifically at design issues for interventions that seek to help teens with chronic illness transition from pediatric and adolescent care to adult health care. This project focuses heavily on leveraging existing behaviors among teens, for example text messaging, to facilitate the exchange of information on chronic illnesses.34
Finally, though there are some differences in priorities and needs, health improvement projects from the developing world do offer some evidence of “proof in concept” for text messaging based interventions to improve health. A project sponsored by “Compliance Service” a private company in Cape Town, South Africa, has demonstrated, by their own assessment, an effective method to encourage compliance with medication therapy for patients with tuberculosis using targeted SMS-based reminders. This project makes extensive use of open-source software applications and low cost messaging services to address one of sub-Saharan Africa’s most important public health concerns.35