Recommendations of the breakout sessions are summarized under the overarching themes of policy, funding, research, and education and training. An outline of the general recommendations is shown in . Recommendations specific to AMIA are shown in .
General Recommendations Related to Informatics for Underserved Populations
Specific Recommendations for AMIA's Role Related to Informatics for Underserved Populations
Participants identified a number of policy recommendations necessary for addressing the barriers and achieving the ideal vision. First, there should be a policy of universal, lifelong health information technology for all people. As a corollary, there needs to be increased funding for ubiquitous access at current and additional locations such at libraries, churches, community centers, malls, and clinics. Because many stakeholders have an interest in improving health care information and health care in underserved populations, there should be increased partnerships among the many types of organizations (community, faith-based organizations, health care delivery, libraries, schools, industry, academia, media, advertising). Key community members and industry representatives in particular, need to be involved earlier in the partnerships than is currently practiced. Also, business plans for informatics programs for underserved populations should be encouraged. Marketing and other plans should be made for dissemination and continued funding to maintain service. Clearly, cost and benefit of the information systems serving the health needs of underserved populations should be examined closely.
Participants in the breakout sessions recognized the importance of standards for vocabularies that address the needs of underserved populations. Consumers often do not understand the terms used in health care education, and health care providers may not be knowledgeable about which terms are often misunderstood. Representatives from community, local, state, and federal organizations should be involved to identify data models that define the relationships between common lay language and medical terminology. The resulting mappings between lay terms and medical terms should be standardized, widely available, and low cost.
To ensure that data pertaining to underserved populations are addressed, the National Health Information Infrastructure (NHII) should include appropriate data elements in data sets to capture and measure characteristics most important to conducting research in underserved populations.
While procedures for informed consent and protection of privacy and confidentiality are currently in place through a number of policies and regulations, the National Institutes of Health (NIH) policies should be broadened to increase sensitivity to funding studies using methods that promote fair practices for obtaining patient consent in populations that are unable to understand traditional informed consent procedures. Creative ways of ensuring consumers' communication rights and benefits and the risks entailed in projects and programs should be developed.
Informatics infrastructure must increase to address specific risks to populations (e.g., emerging infection, bioterrorism threats, and other hazards), particularly for underserved populations that have less access to technology. At the same time, preventive health/general health education for the general population should be included.
It is critical to re-engineer provider financial incentives to promote patient-specific health education integrated into both preventive and therapeutic interventions. Online consultations need to be recognized as educational approaches (similar to “in-person”). Health information and health care using technologies should be reimbursable at the levels of providers and healthcare organizations.
Partnerships between health insurance providers, health care professionals, philanthropic organizations, businesses, and the community may find it advantageous to fund initiatives to improve the health of the underserved. While any one of these entities can contribute individually, collaboration would promote more coherent and effective health communication and less fragmentation of health care and practices for the underserved.
Funding agencies should give priority to funding projects that incorporate evaluation methods that take into account the special needs of underserved populations. Currently, there is an emphasis on randomized control trial studies as the gold standard. Funding agencies should fund pilot studies with evaluation designs that are exploratory, descriptive, correlational, and qualitative. There is also a need to fund population-based longitudinal studies and large-scale, multicenter, multistate demonstration projects such as an information technology research network.
Integrated working group meetings within organizations (e.g., AMIA, American Public Health Association) should include potential financial backers. Successful for-profit strategies should be used to fund informatics programs addressing the needs of underserved populations.
Research pertaining to the information needs of underserved populations is crucial, for example, in looking at various forms in which information is acceptable and effective. Research should take into account characteristics of unique populations when designing recruitment strategies and interventions and selecting outcome measures. It is essential that researchers engage community gatekeepers in defining the need/problem to ensure that the target community is represented in the planning process. Leaders who are knowledgeable about and respected by a particular community should be invited to participate in defining community needs and designing health informatics projects. There should also be better geographical coordination of research to promote collaboration and dissemination.
Research should include a broad array of designs, including feasibility studies of theoretically driven interventions, efficacy trials of the intervention in an optimized setting, effectiveness trials in real world settings, and use of methods appropriate to the maturity of the system. Formative evaluations need to be conducted for intervention studies. Researchers should provide feedback to the community as part of the evaluation plan. Research should also, whenever possible, include a cost–effectiveness/cost–benefit component with the goal of influencing reimbursement policy.
More research needs to be conducted on natural language processing and on developing technical standards that allow interoperability and sharing of information across systems. Natural language processing is necessary for functions such as parsing consumer-generated text and linking it to relevant health information resources. Important standards that need to be considered in designing consumer health informatics applications include standards for the interoperable technologies (specifications, guidelines, software, and tools) developed by the World Wide Web Consortium (W3C) and federal standards for usability (e.g., Section 508 is a federal law that requires federal agencies to make their electronic and information technology accessible to people with disabilities). Open-source tools should be used in the development of programs for greater ease in replication and dissemination.
A range of educational programs to address informatics issues in underserved populations is urgently needed. Informatics students and professionals should adopt participatory action research principles in designing human interfaces for programs that would meet the needs of underserved populations. Participatory action research is also necessary for the development of content and formats for health information that would be appropriate for varying literacy levels. For example, nontextual messages may be used in place of text in programs developed for the subset of vulnerable persons with low levels of health literacy. Furthermore, health information materials should be developed for multiple learning styles; some people are visual learners, whereas others learn better through audio messages. By the same token, different learners may prefer varying levels of abstract and concrete illustrations.
Education accreditation agencies should become more aware of literacy issues and encourage development of curricula and in-service training programs to sensitize health care providers to issues of health literacy.
Health care professionals' educational curricula should include principles of behavioral change. These principles should be evident in the way health information is implemented for patients of underserved populations. Systematic and appropriate use of “Information Prescriptions” should be part of health care practice.
Health care professional education should include media literacy and critical thinking to judge the quality of e-health information. Health care professionals, in turn, need to promote consumer education for judging the quality of Web-based health information. Considerable evidence shows that consumers need not only valid evaluation criteria but, more importantly, specific education relating to the correct utilization of criteria.22,23
Existing standards should be applied while developing new standards and mechanisms for quality evaluation.
Research and design methods appropriate to underserved populations should be included in the graduate education of all informatics students. The curriculum should include methods for assessment of program usability and computer–human interface, as well as participatory research design, measurement theory, survey research, data analysis, and other issues most appropriate to conducting research in underserved populations.
Key Themes in General Recommendations
The general recommendations emphasized four key themes: payment and reimbursement policies, health care standards, partnerships, and dissemination.
Payment and reimbursement policies must be adapted to include reimbursement for health professionals for appropriate health education and e-health tool utilization. Financial incentives should be provided to promote culturally sensitive health education as part of both preventive and therapeutic interventions. Government support through grants and other funding mechanisms should be provided to realize the commercial potential of e-health projects that are inclusive of underserved populations.
Standards should be encouraged to enable interoperability and sharing of information across systems designed for use in underserved populations. Technical standards include universal patient information data sets, personal health records, consumer health vocabulary, W3C, and 508 usability standards. The initial focus should be on enhancing awareness of existing and evolving standards.
Partnerships are the key to success. Partnerships begin with participatory action research frameworks, taking special care to involve all stakeholders in the development, conduct, and leveraging of the results of research. Beyond the primary stakeholders of consumers and their families, stakeholders include the government at all levels, corporate and other private concerns, faith-based organizations and other grass roots organizations, health care providers, and third-party payers. Public–private partnerships should be encouraged. Before embarking on health information and communication interventions or other consumer-oriented e-health tools, community and user needs should be evaluated using multidisciplinary team approaches. Approaches for health information and communication should provide for ubiquitous access at locations such as libraries, churches, and community centers. New e-health projects should be scaleable, sustainable, and disseminated widely. These criteria should be integrated into the projects before development; both formative and summative evaluations appropriate to the stage of development should be required. The economic value of developing e-health interventions for diverse populations must be evaluated.
Dissemination of results should not be limited to funding agencies and academics, but, in the spirit of participatory action research, should be disseminated through information technology to underserved populations as well. AMIA, in particular, should continue to showcase effective strategies, perhaps even in the formative stages through special poster presentations.
Projects should be local in concern, but may optimize success as large-scale, multicenter, multistate demonstration projects such as information technology networks. In addition, the public health infrastructure should increase to address new risks, such as emerging infections and bioterrorism, by including preventive health information for the general public. Support mechanisms should extend information access to populations of all generations, cultures, and economic statuses.
Training and education should be an integral part of dissemination and diffusion to develop skills in critical thinking and media literacy and to help consumers and providers assess and make good decisions on information quality. Any development should take into account diverse learning styles and user preferences for media. Nontextual messages appropriate for various print and health literacy levels should be accommodated.
Recommendations for AMIA
The results of the breakout sessions recommended that AMIA should advocate standards-making groups or organizations to create standards that support accessible health information that is appropriate to age, culture, and language. AMIA should also establish research priorities related to the use of informatics in underserved populations and communicate these priorities to funding agencies.
AMIA should take steps to determine, disseminate, and showcase the best practices for providing relevant health information to underserved populations. A range of strategies for fostering good practices should be developed and disseminated to policy makers. AMIA should also take a leadership role in integrating the efforts of other organizations such as library groups, Medical Library Association (MLA), APHA, and the Association of College and Research Libraries (ACRL) in addressing policies related to health information for underserved populations.
AMIA should play an important role in developing priorities for funding and in advocating for partnership collaborations in funding for health information and health care for the underserved. AMIA, as the premier organization for health informatics, should articulate the critical need for reimbursement for health informatics at the level of health care professionals, insurance providers, and health care organizations.
AMIA has a number of mechanisms in place to promote and advocate research to support bridging the digital divide for vulnerable populations. AMIA is in an ideal position to identify and advocate research priorities to appropriate organizations and to develop and advocate for standards pertaining to informatics programs for the underserved. Working groups should be encouraged to provide leadership in the evaluation of current standards and the development of additional standards for effective e-health communication with underserved populations.
An expansion of AMIA's Web-based database should include a Web catalog for research project summaries, educational materials, and funding focusing on underserved populations. AMIA should promote mini-poster displays for special topics at meetings, as well as showcase effective tailored interventions in presentations or panels. A special issue of the Journal of the American Medical Informatics Association (JAMIA) or special sections of the Journal should be devoted to research topics highlighting informatics for underserved populations.
Education and Training
AMIA should play a vital role in the education of the informatics workforce by incorporating a strategic priority to increase content related to evaluation methods for the underserved in informatics educational programs. Possible activities include featuring evaluation methods of underserved population research during an AMIA preconference, forming an evaluation special interest group, and/or networking among the working groups. AMIA's current mechanism for coordinating efforts among working groups should include evaluation of projects for underserved populations. AMIA should partner with other organizations such as APHA, MLA, IOM, American Academy of Nursing (AAN), and others to collaborate on projects and to advocate for educational issues of mutual interest.