Following the presentations of the La Communidad Habla and Get Connected programs, the workshop participants turned to the broader policy and technology issues that shape such initiatives. Policy can either support or hinder the use of technology toward achieving and creating
health equity, which means that policy actions can be a critical factor in the success of interventions.
The integration of health information technology and eHealth is being prompted in part by federal policy, observed Tessie Guillermo, president and CEO of ZeroDivide, which is a mission-driven consulting organization that helps communities transform themselves through the adoption and integration of technology. Health Insurance Portability and Accountability Act (HIPAA) regulations, the Health Information Technology for Economic and Clinical Health (HITECH) Act, incentives for meaningful use of electronic health record (EHR) technologies, and revision of the International Statistical Classification of Diseases and Related Health Problems (ICD) all have helped drive the digitization of health care.
Even apart from these policies, the health care industry has been rapidly changing. One new emphasis, as the industry moves away from a fee-for-service model toward a fee-for-value world, is population health management, noted Guillermo. In one formulation of that transition, information technology is at the core of population health management, with data driving a virtuous loop of continuous improvement. But a better way to view this transition is by placing the patient in the center of an integrated health care ecosystem, with technology feeding into the system, said Guillermo. In either formulation, information “is a constant.”
Today, the pieces of the health ecosystem are not well connected, Guillermo pointed out. Very few community health centers or primary care medical homes have adopted a working EHR, and most will not achieve meaningful use anytime soon. To navigate the system to achieve good outcomes, reduce costs, and improve care management, patients and health care providers have to navigate around processes that today stand outside an integrated system.
Many of these processes involve technology. Social media promote services to new consumers, enable the sharing of stories, and help build communities. Mobile technologies also can promote services along with extending care and providing customer service. Consumers want to take advantage of these technologies, as surveys have repeatedly documented. The problem, said Guillermo, is that these technologies generally do not intersect with the large-scale data initiatives being promoted by policies. The result is likely to be a “long, expensive, difficult, and complex” process of building capacity and managing change to combine the two separate approaches, she explained.
ZeroDivide has been doing research in recent years on the barriers to greater use of eHealth approaches by low-income, immigrant, non-
English-speaking, disabled, rural, and other underserved populations. As part of this research, it has categorized eHealth tools into three categories of decreasing complexity: messaging tools, disease management tools, and tethered personal health records (PHRs) and patient portals.
The evidence shows that messaging and disease management applications are effective in reaching underserved patients and improving their engagement, Guillermo observed. However, these solutions have yet to be brought to commercial scale by large health systems and insurers. Also, applications tend not to be tied to existing hospital and health system records, which presents challenges. Instead, they have been implemented primarily via pilot programs run by departments of health and academic medical centers. As a result, Guillermo said, “Things that work are not getting fast enough into the hands of people that can use them.”
PHRs and patient portals hold significant potential to engage and empower patients, Guillermo said. However, they are generally tied to successful electronic medical record systems, which mean that safety net providers are less likely to offer them. Also, they generally have poor usability and design when compared with Web 2.0 tools and mobile apps. Even within integrated health systems, there are significant demographic disparities in their adoption. “All of these problems are things that we have to address . . . on an industry-wide and a population-wide health scale,” she added.
Guillermo cited a number of other barriers to eHealth adoption, including a lack of access to technologies, little interoperability of tools across platforms, the linguistic or cultural competency of tools, limitations caused by disability or technological literacy, patient and physician awareness and incentives, inadequate health literacy, and privacy concerns or distrust. She also pointed to the results of focus group research with racial and ethnic minority women, ages 30 to 64, who were making health decisions in their households and were themselves at risk for a chronic disease. They generally have access to the Internet, “Maybe not the highest speed or most affordable, but they have it,” she explained. But they are discouraged by what they see, she said, adding “It doesn’t reflect them. They want personalized, culturally competent technology solutions.”
In response to a question about privacy concerns, Guillermo pointed in particular to the need for a balance between the fear of data being used for the wrong purpose and the use of data for health equity objectives. Everyone in the health care ecosystem has a responsibility for maintaining the confidentiality of data, she said. Also, technologies can help inform patients about how their data will be used so they can have more control over that use. In contrast, if data are written on paper, “it could just be left on the table,” Guillermo noted. Education around privacy, confidentiality, and the regulation of data uses is as important as the development of the
tools, she said. “The privacy and security barrier is a major obstacle to get past for certain segments of the population. We need to acknowledge the importance of protecting information and communicate” the security steps being taken, she said.
The focus groups resulted in a set of recommendations that Guillermo cited. One is to improve the digital literacy of both consumers and safety net providers, who are interacting with patients around the use of these tools. Another is to support eHealth tools that feature user-centered design. A third is to support technology capacity building for safety net providers. Today, community health centers are being supported to adopt electronic medical records. However, they are not receiving much support for the testing and use of consumer-facing tools or the other infrastructure tools that support operational processes within their clinics.
Policy approaches can be both top-down and bottom-up, Guillermo noted in closing. Top-down federally instigated policies include meaningful use requirements, innovation grants and funds for eHealth pilots, and a central database or registry of approved education resources and apps. For example, a registry of commercial products that have viability and reliability would enable patients and providers to find good solutions to their problems.
Bottom-up community programs also are important, said Guillermo. These include community-led marketing and awareness campaigns, forums to bring patients and developers together, and community eHealth pilots. Communities and academic institutions could form partnerships to develop these approaches, where funding, intellectual property, and revenue streams are shared.
Increasingly, “There is an attentiveness to the need to bring providers, patients, investors, and innovators together to begin to do deep dives into solving some of these barriers,” said Guillermo, adding,
People have to be open to that, to not stay in their enclaves, where we are comfortable. . . . The people in this room, you all know that. You are a big part of the solution. I would hope that, because of forums like this, there will be opportunities for more of this to happen in an accelerated way.
Kaiser Permanente has “a lot at stake with regards to eHealth equity,” said Brian Raymond, senior health policy consultant at the Kaiser Permanente Institute for Health Policy. Kaiser Permanente operates in seven regions, serving eight states and the District of Columbia, and has more than 10 million members. The intersection of health information technol-
ogy, health care delivery, and the communities, individuals, and families that the system serves are directly linked to eHealth equity.
Kaiser Permanente has made a very large investment in health information technology. Its EHR system, known as HealthConnect, is deployed in all of its facilities across the nation and is the largest health information technology system in use today in the United States. The system integrates appointments, registration, billing, and back office health care functions; supports inpatient care, outpatient care, and ancillary services; and includes a data repository and patient portal. The system provides patients with secure e-mail to their providers, online access to test results, online appointment scheduling, prescription refills, and video appointments with primary care providers. Today, one-third of Kaiser Permanente’s primary care visits are conducted by e-mail, and 27 percent of the HealthConnect transactions were conducted via mobile devices. HealthConnect is “transforming care for our members,” said Raymond.
These changes are producing quality improvements in care, explained Raymond. Kaiser Permanente’s care ratings for chronic conditions and cancer prevention have risen from the middle of the pack to above the 90th percentile since HealthConnect was implemented. All seven of Kaiser Permanente’s Medicare plans are among the top 10 plans, as determined by the National Committee for Quality Assurance, and the Southern California plan has been the top-rated plan for the past 3 years.1
Despite these quality improvements, “health disparities persist among Kaiser Permanente members,” Raymond observed. He showed a series of charts documenting differences in the occurrence of obesity, asthma, diabetes, and hypertension in the San Francisco Bay Area, with areas of poor health corresponding largely with low-income communities and communities of color. “That is a major concern for us,” he said.
To ensure the benefits of health information technologies accrue to all its members, not just those with access to technologies and the resources and skills to use them, Kaiser Permanente researchers have been studying potential disparities in the use of HealthConnect by its members. For example, Zhou et al. (2010) found that secure e-mail use by patients was associated with a 2.0 to 6.5 percent improvement in performance on measures of the Healthcare Effectiveness Data and Information Set, such as glycemic (HbA1c), cholesterol, and blood pressure screening and control measures. This finding highlights outcome disparities between users and nonusers of secure e-mail, Raymond observed.
Research also has demonstrated that Kaiser Permanente members who are registered for access to their personal health records are more likely to
1 Kaiser Permanente, unlike other health systems, is not based on a fee-for-service model; this may contribute to their innovations and investments to reduce disparities.
be non-Hispanic whites than the nonusers of the system. Similarly, African Americans and Latinos in northern California were more likely than non-Hispanic whites to request a password for the patient portal but never log on. A study in Georgia found that Kaiser Permanente members with a postgraduate education more frequently registered for access to the patient portal than adults with a high school education or less. “Together, these findings document to us that there are potential eHealth disparities among our membership,” said Raymond, adding “This is a concern that we need to keep on our radar and track and address.”
To reduce these disparities, Kaiser Permanente has identified and implemented actionable strategies to ensure that health information technology addresses the needs of at-risk and traditionally underserved populations. One approach has been to segment the at-risk population into three groups: “haves” who currently have information technology access and want to use it for their health, “wants” who want access to eHealth and could have it if they receive appropriate assistance, and “don’t wants” who do not want access to eHealth. For the “haves,” the strategy is to focus on content and functionality—for example, making sure that the patient portal has information that is accessible, useful, and relevant to that population. Marketing is also important for these individuals, in that they may not be aware that a patient portal exists or that it may have content that is valuable to them.
For the “wants,” the strategy is to focus on increasing technology access and skill development, such as through a broadband or computer access program in an underserved area or a computer literacy program. A secondary strategy for this segment is to offer alternatives to technology by providing high-quality care and services through low-technology communication channels.
For the “don’t wants,” high-quality alternatives to technology also are needed, Raymond observed, including traditional in-person visits, phone calls, and print material. Also for this segment, marketing could raise their awareness of the potential value of eHealth to them. “Maybe if it is not to them, it is for a caregiver,” Raymond said. “Maybe they are not interested themselves, but they have a proxy who would be interested in using the system on their behalf,” he added.
Kaiser Permanente does not have all the answers to eHealth equity, but it has “skin in the game,” said Raymond. “We recognize that we have a role to continue playing in terms of advancing research and better understanding both the benefits of our health information technology system and the potential risk that it poses.”
At the technology conferences he attends, presenters sometimes ask for a show of hands to determine how many people use iPhones, Android phones, or Windows phones, noted Noam Ziv, the founder and CEO of Kesembe, Inc. But if someone asked an audience to hold up their hands if they had ever been sick, every hand would be raised. For that reason, the integration of technology into health care is obviously of interest to technology developers.
Ziv offered several observations about technology and health based on his experiences and what he had heard at the workshop. He began by noting that communication is the most prevalent utility in the world. Even in places where there is no electricity, people still use cell phones, adding that “They have solar chargers. They find ways to share cell phones. It is absolutely amazing.”
Technology developers tend to think in terms of scalability. If adding another person to a service requires hiring a person to support that service, “it is not going to scale,” said Ziv. Today, eHealth applications tend to require a high level of expertise to use, which requires extensive support. The way to reach large populations and reduce costs is to have fewer people serving larger populations. This requires making technologies more accessible and usable at all education levels. “Literacy can be improved, but also things can be simplified,” he said. iPads, for example, do not ship with manuals because they are designed to work as soon as they are turned on.
The cost of technologies has been declining, Ziv pointed out, but the cost of connectivity, especially in the United States, has not. The United States is not a low-cost wireless or Internet provider; nor is it the world’s leader in speed or coverage. The environment that keeps connectivity costs high could be changed, Ziv noted, but doing so requires changing regulations. For example, regulations about what people can store on their phones increases complexity and costs. New policies also could help in places where connectivity is slow or nonexistent.
Much more of health care can move online, Ziv noted. He explained:
Think about what the banks have done for us. It used to be that whenever you wanted a transaction, you would go to the bank. There will be a teller, one-to-one. You would stand in line. You would tell them, “I would like to deposit a check, . . . what is the balance of my account?”
Today, people get their banking information online, deposit checks electronically, and use automated teller machines for cash. They go to their banks only on rare occasions.
“We have to create similar analogies for health care systems,” said Ziv.
“We need to be able to deposit our health data electronically. We need to be able to interact with our health information or health systems when and where and how it is convenient to us. To do that, we need to be able to automate more of these processes,” he added.
Technologies also can benefit health care providers by helping them make medical recommendations and eliminating wrong answers. Developing such applications poses challenging and complex problems, Ziv acknowledged, pointing to regulatory hurdles that essentially say, “you can’t make a medical recommendation as a machine” without going through a daunting approval process. But regulations could be changed to enable such advances. Also, as Ziv pointed out, not everything can be regulated. People need to learn about the perils as well as the promises of technology.
Finally, companies are interested in health technologies because of the business opportunities they provide. For example, companies are offering cloud-based Web services partly because of the demand for those services but also to build markets for their products. Ziv also mentioned the Qualcomm Tricorder XPrize, which is a $10 million global competition to stimulate innovation and integration of precision diagnostic technologies.2 The device has to be operable by a patient, not a trained physician, which will improve both usability and health literacy.