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If diverse and underserved patients are to gain meaningful access to, and meaningfully use, their electronic health information, that health information must be available in “human readable AND useable formats”, including appropriate health literacy and numeracy levels, languages in addition to English, and formats appropriate for individuals with visual impairments and physical disabilities. The principle of using and making available multiple formats and channels for all electronic communication of health information must be a standard requirement for all patient-facing heath IT. For example, electronic copies of clinical summaries, care coordination documents, and discharge summaries will not be accessible or meaningful without alternate and multiple formats. Sending appointment reminders… more »
ONC should also work with other federal agencies such as the Federal Communications Commission to address and reduce digital divide issues (including the availability and cost of internet and broadband access, and data costs for mobile/smart phones) for racial and ethnic minorities, limited English proficient individuals, seniors, those living in rural areas, and individuals with disabilities.
-California Pan-Ethnic Health Network
Health IT cannot be accessed or used without appropriate electronic communications technologies, including email, texting, telephonic interactive voice response technologies, telehealth, remote electronic monitoring tools, etc. For example, a limited English proficient individual will not be able to schedule a medical appointment or request a prescription refill online if the patient website/portal and instructions are only in English. The principle of using and making available multiple formats and channels for all electronic communications must be a standard requirement for all patient-facing heath IT. All electronic health information must be available in “human readable AND useable formats”, including appropriate health literacy and numeracy levels, languages in addition to English,… more »
While ONC is to be commended for its activities to raise awareness and educate health consumers about the benefits of health IT, much more outreach and education is needed in diverse and underserved communities, especially among racial and ethnic minorities, limited English proficient individuals, seniors, those living in rural areas, and individuals with disabilities. Many of these populations have experienced historical barriers to high quality health care and have legitimate issues of mistrust of both health care providers (who often excluded them or discriminated against them in the provision of care) and the federal government. Tailored and community-based outreach, education, and engagement with these populations is essential to achieving the full potential of health IT to support the improved health of all Americans.
-California Pan-Ethnic Health Network
There is increasing awareness of the importance of the social determinants of health in improving one’s health status and the health of a population. While it is not realistic or feasible for an electronic health record (EHR) to document structured data that would address some of the social determinants of health, EHRs could and should document a comprehensive health assessment (including social and cultural factors) and contain up-to-date, locally relevant community resources list. In addition, there could be stronger linkages between these two elements, such as requiring those community resource lists to identify, and providers to make referrals to, supportive and emergency housing options for homeless individuals when homelessness is identified in a health assessment.
Similarly,… more »
There are almost no tools to support shared decision-making that are culturally and linguistically appropriate. At most, some tools have been translated into Spanish but are not available in any other languages. Since shared decision-making also requires consideration of cultural beliefs, attitudes, and norms about health and health care, it is especially vital that the tools are not simply translated from English but address the specific cultural factors relevant to diverse and underserved populations. ONC can partner with and encourage OMH, AHRQ, NIH, and the Patient-Centered Outcomes Research Institute to prioritize and fund the development and validation of shared decision-making support tools that are culturally and linguistically appropriate for diverse and underserved populations.
-California Pan-Ethnic Health Network
Health IT has the potential of decreasing disparities if appropriately leveraged. For example, data demonstrates that African Americans and Latinos access the internet through their mobile phones at higher rates than other populations. Accordingly, health IT directed at, or for use by, African Americans and Latinos should use text messaging and mobile applications as much as websites and email. Similarly, there are online and mobile applications that are readily available and used in many languages other than English. If these online and mobile communications and information technologies are not used for heath IT, then the digital divide and disparities will only INCREASE rather than decrease.
If health information can be accessed and used by diverse and underserved populations who experience… more »
Finally, at a population and public/community health level, having more data and health information about a population can identify specific local disparities and prioritize interventions to reduce those disparities. However, it is essential that demographic information about patient race, ethnicity, language and other factors such as disability status, sexual orientation, and gender identity continue to be collected AND all quality data be stratified by each of those demographic characteristics to identify and reduce disparities. In terms of race and ethnicity, further granular disaggregation, as recommended by the Office of Minority Health under its Affordable Care Act section 4302 standards, and further recommended by the Institute of Medicine in its 2009 report “Race, Ethnicity, and Language Data: Standardization for Health Care Quality Improvement” should be implemented through health IT, including all ONC-certified EHRs and all health information exchanges.
-California Pan-Ethnic Health Network « less
Many new health care delivery models such as the patient-centered medical home and accountable care organizations rely on the platform of health IT. If the digital divide and access barriers for diverse and underserved populations are not addressed and reduced, then the continued implementation of these models will only INCREASE disparities in health care and health. At the same time, the “safety net” hospitals, physicians, community health centers, pharmacists, labs, and other health care providers for these diverse and underserved populations often have the least capacity and resources to implement health IT and are among the slowest adopters of health IT. As these new health care delivery models continue to be implemented, it is vital that ONC and its federal partners continue to… more »
Health IT has the potential to vastly expand data available for health services research and quality improvement by making available more comprehensive, real-time, population-level and community-level clinical data available for analyses. Aggregation of data from all local providers in a geographic service area is possible with health information exchange capacities. In order for health IT to enable research and inform clinical practice improvement that reduces disparities, all quality data must be stratified by patient race, ethnicity, language and other factors such as disability status, sexual orientation, and gender identity. These demographic data elements must continue to be included in any aggregation of the data from multiple providers and sources. In terms of race and ethnicity,… more »
(Q#1) ONC should require the capability for EHRs to identify relevant clinical trial opportunities for individual patients as a way to introduce efficiencies for both providers and patients in terms of identifying potential trials for patient participation. Facilitating communication between health practitioners, the research community, and patients and their caregivers is critical to advancing cures and treatments, and ensuring patient access to them.
o If patients are providing health information directly to a researcher, it is essential that there are privacy and security protocols in place that govern the transmission of health information.
(Q#2) We encourage ONC to continue and expand its innovation challenge and award programs. The advent of Stage 2 of the Meaningful Use incentive program, particularly the ability of consumers to view, download, and transmit their health data, will likely increase the demand for new apps and other eHealth tools. ONC should leverage this development as it unfolds. Additionally, developers should be encouraged, or even required, to work with consumers in the design and development of applications and other eHealth tools in ONC-sponsored challenges. Designing systems with the audience they are built for will help to build consumer trust and buy-in; fostering collaboration may also help ensure that key expectations of consumers are met.
(Q#3) ONC should encourage providers to strive to offer patient-specific education materials in the language spoken by their patients, no matter what that language is. Under the auspices of the Meaningful Use incentive program, we fully support utilizing data collected about a patients’ preferred languages to provide access to meaningful, useful education materials. ONC should consider adding to Meaningful Use a requirement to make patient-education materials available in the top five non-English languages spoken in the state where the Eligible Provider/Eligible Hospital is located. This will promote greater relevance to the community in which an individual lives.
Government policies could also invest more heavily in developing shared decision-making tools which would enable providers… more »
(Q#1) While the adoption of health IT is growing, there is significant risk that populations who lack Internet access will be left behind. To bridge this “digital divide,” the government should capitalize on partnerships with community organizations which have direct access to such populations. For example, consider the partnership between the New York Academy of Medicine Library, the New York Public Library, and Settlement Health in East Harlem, or the partnership between Yale University and Head Start parents in New Haven, Connecticut.
(Q#2) Many of the current training and education materials are not designed with consumers in mind and therefore are not easily digested by patients, families, and caregivers. Once meaningful consumer educational materials have been identified, the federal government could help direct these materials to health care navigators and health coaches. This could be accomplished by creating a singular, central repository and ramping up outreach efforts pointing communities towards the repository.