AMIA Spring Congress

Bridging the Digital Divide: Informatics and Vulnerable Populations

Report from Breakout Groups

Friday, June 5, 2003

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
Not enough 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

· Examine opportunities & issues for entrepreneurship

· 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

o 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

o Support mechanisms to extend information access to all populations

§ for example: vouchers, sliding scale ISP, etc.

o Sustained funding

· Content/Access/Utilization

o Define needs of the underserved populations

o 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.

o Target multiple audiences (varying ages, cultural backgrounds)

o Funding agency support for outcomes research on evidence based health information interventions

o Conduct formative and summative evaluations

o Reimburse provision of health information on-line\

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

o Better geographic coordination of research

o Engage individuals, community leaders, and social networks within communities

o Engage libraries and schools (literacy programs)

o Recruit corporate partners

o Learn from successful business models

o Develop informatics training curricula to include interdisciplinary community-based research strategies

AMIA’s role in addressing underserved populations

· Showcase effective tailored interventions

o Mini-poster sessions, tracks, panels

o JAMIA special issue

o 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 meetings

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