AMIA Spring Congress, Report from Breakout Groups

Friday, June 5, 2003

Bridging the Digital Divide: Informatics and Vulnerable Populations

Claire Twose

Congress Web site: http://www.amia.org/meetings/spring/current/info.html

Issues and Trends Group

Vision

All people in the US regardless of literacy, culture, function or socioeconomic status, can effectively improve their health using e-heath interventions

Barriers

• Lack of sensitivity toward effective e-health communication (ex. health and technology literacy)
• Money for developing and sustaining programs and dissemination of best practices in e-health
• Notenough stakeholder involvement
• Bureaucracy lack of central coordinating group
• Lack of a high profile agenda
• Lack of evidence of ROI
• Lack of dissemination / promotion of e-health
• Lack of reimbursement for providers

Policy

• Encourage payment/ reimbursement for health professionals for appropriate health education and E-Health tool utilization
• Encourage public / private partnerships
• Technology transfer
• Government support for commercialization potential
• Make E-Health projects adapt to issues of diverse populations

Funding

• Add evaluation criteria to grant applications that give weight to:
  • Incorporating multidisciplinary team approaches
  • Proven track history of effective team approaches
  • Plan for the service of the project to be sustained
  • Plan for best practices to be disseminated/ diffused
  • Stakeholder involvement (planning, implementation, & feedback)
• Funding for health communication (including health & media literacy)
• Cross-agency (cross disease) funding mechanisms ex. Literacy, cultural appropriateness.

Research priorities

• Diffusion, Dissemination, Marketing
  • E.g. Intergenerational and cultural transfer of attitudes and values
• Demonstrating the economic value of e-health interventions designed for diverse populations.
• Respond to and incorporate user and community defined needs, priorities, and preferences

Education and Training

• Usability, Computer Human Interface, participatory design, etc….(across diverse populations)
• Teach providers to utilize behavior change principles; incorporate this in curricula; encourage through professional assns, etc. like use of use Information prescriptions
• Promote education and skills development on critical thinking and media literacy to help consumers and providers assess and make good decisions on information quality. Capitalize on existing programs and standards.

Overarching recommendations

• Increasing representation of under-represented groups (cultural, economical, age, etc.)
• Importance of Ethical, Legal, Social Issues/Implications (ELSI)
  • Access, equity, justice, etc.
  • Human subjects protection
  • Confidentiality & privacy
  • Appropriate uses, users of decision support
  • Encourage OHRP (Office of Human Research Protection,) etc. to expand curriculum development in human subjects issues, protections
• Develop materials for multiple learning styles
• More work in natural language processing
• Technical standards that allow interoperability & sharing of information across systems (universal patient information data set, W3C, 508 usability, computer human interface, )
  • List of standards currently available & being developed

Strategies Group

Mission

• To recommend strategies for overcoming the digital divide and improving health and healthcare for underserved populations

Three Major Strategic Goals

• Infrastructure
  • A universally accessible national health information infrastructure will be affordable, reliable, and kept current with advances in technology in all available delivery systems.
• Content/access/utilization
  • Every patient and family member will be able to identify, understand, and use health information that is authoritative, current, and accessible with respect to language, culture, age and ability.
• Development
  • Informaticians will advance a multidisciplinary, outcomes-driven, adequately funded national program of research, development, education, and evaluation to reach underserved populations.

Strategies

• Infrastructure
  • Support mechanisms to extend information access to all populations
    • for example: vouchers, sliding scale ISP, etc.
  • Sustained funding
• Content/Access/Utilization
  • Define needs of the underserved populations
  • Identify & include all stakeholders in development & implementation
    • 3rd party payers, health care workers, patients & families, community leaders, librarians, educators, leaders of faith-based organizations, technology vendors, etc.
  • Target multiple audiences (varying ages, cultural backgrounds)
  • Funding agency support for outcomes research on evidence based health information interventions
  • Conduct formative and summative evaluations
  • Reimburse provision of health information
  • Leverage existing resources
  • Convey messages in multiple formats
    • Modalities: video, audio, text to voice, graphics, animation
    • Media: CD, journal, web, Braille, TV
  • Disseminate information in multiple formats: make this an absolute priority in federally funded programs
• Development
  • Better geographic coordination of research
  • Engage individuals, community leaders, and social networks within communities
  • Engage libraries and schools (literacy programs)
  • Recruit corporate partners
  • Learn from successful business models
  • Develop informatics training curricula to include interdisciplinary community-based research strategies

AMIA's role in addressing underserved populations

• Showcase effective tailored interventions
  • Mini-poster sessions, tracks, panels
  • JAMIA special issue
  • Summary of research projects
    • Web based database amia.org
• Establish research priorities for reaching underserved populations
• Advocate (to legislature, to research funders, etc.)
• Partner with other organizations (APHA, MLA, ACRL, IOM)
  • Collaborate on projects of mutual interest
  • Co-sponsor special interest meeting

Evaluation Group

Ideal:

• Determine the need and design the intervention appropriate to that need
• Involve the community (debate but no decision on how to define community)
• Incorporate evaluation at all stages of the process
• Include mechanism for continuous evaluation/data acquisition

• Incorporate various types of evaluation:
  • Formative evaluation, e.g. Did the system get used? How much? How?
  • Cost effectiveness: important for sustainability

• Evaluation needs to be free of:
  • Ethical problems
  • Conflicts of interest

Challenges to Achieving the Idea were Grouped into Three Areas:

Community

• Community participation and determination
• Recruiting subjects—sample bias
• Consent

Scientific

• Lack of theory and lack of dissemination of relevant theory that is available
• Lack of valid, reliable evaluation instruments
• Time issues
• Lack of trained informaticians  (particularly ones trained in evaluation!!)

Administrative(Taken from breakout session notes, not the summary)

• Burdensome administrative requirements, e.g. from IRBs
• Lack of understanding on the part of the IRB who are bench scientists and don’t understand psychosocial research, let alone needs of vulnerable populations for flexibility in format, e.g. accepting verbal consent from those who can't read.
• Hard to get published if you didn’t do an RCT, which may not be appropriate given the state of the area
• Tenure track committees in academic settings doesn’t understand (or value) different research formats either

Recommendations(These recommendations have been taken from my breakout session notes):

Education/Training

• Theory courses should be taught
• Include competencies for evaluation in all funding for informatics training

Research

• Encourage research into the theory for publication.
• Involve community members at all stages of the process

Funding

• Funding of evaluation training including community stakeholders and gate-keepers.

Policy

• Encouraging the development of datasets that are usable for evaluation.
• Encourage the development of data standards so that meta-analyses can be done
• Develop competencies in Evaluation for all participants in the process, from gatekeepers to informatics scholars.
• Diffuse informatics into related disciplines; develop the core set of competencies for each discipline.

Dissemination

Ideal

To improve health literacy, health care, public health and health itself by delivering universal, timely access to health information, communication decision support and disease management tools that are evidence-based, culturally sensitive, adaptive, and empowering to the individual

Barriers

• Perception of need
• Economic incentives
• Low literacy
• Lack of societal commitment
• Patients' inability to partner with health care providers
• Unbounded scope of issue

Enablers

• Innovative incentives
• Community outreach initiatives
• Scalable technology
• Interactive/adaptive technology
• Community collaboration in development
• Empowered consumers

Strategies

• Require teaching about health, informatics and literacy from Health Start and 1^st grade on
• Make tool open source and place it with students
• "Madison avenue" marketing strategies
• Partnerships with media embedded information
• Provide a free distribution system—phone/tv
• Disseminate via TV (PSA)
• Social marketing via TV
• Human Outreach
• Participatory design of promotional campaign with intended audience
• Training the Community Health Center, library, church
• Access…

Policies

• Universal, lifelong technology access for all
• Increase funding for ubiquitous access

Funding

• Change funding mechanisms for health information—insurance companies, etc

Research

• Increase exploration/research to further define effective strategies for dissemination of information technology
• Funding for large-scale multi-center, multi-state projects

Education

• Health literacy from primary education onwards
• Providing educations for healthcare providers to increase awareness of health literacy issues for patients

Innovation

• Public Health infrastructure must increase to address risks