Technology for improving cognitive function. A workshop sponsored by the U.S. Interagency Committee on Disability Research (ICDR): Reports from working groups

Abstract

Keywords: Assessment; disability; Alzheimer's disease; intellectual disability; traumatic brain injury; stroke; assistive technology; disability statistics; biomedical engineering

Introduction

 

A two-day conference on Technology to Improve Cognitive Function, sponsored by the Interagency Committee on Disability Research (ICDR), Interagency Subcommittee on Technology (IST), was held from 29 - 30 June 2006 in Washington, D.C. The meeting was co-sponsored by the President's Committee for People with Intellectual Disabilities and the National Science Foundation. The conference was divided into two segments. The first segment, summarized in the preceding paper “Technology for Improving Cognitive Function: Report on a Workshop sponsored by the U.S. Interagency Committee on Disability Research (ICDR)”, focused on presentations by invited lecturers conversant with the field of cognitive disabilities and technology. The second segment consisted of working groups charged with developing a problem statement, potential solutions and recommended actions. This paper summarizes the break-out groups' activities and recommendations.

Four break-out groups were created: (1) Technology Accessibility Standards/Cognitive Accessibility in the Built Environment; (2) Research and Development in Technology to Improve Cognitive Function; (3) Technology to Improve Cognitive Function and Aging Issues; and, (4) Technology to Improve Employment and Education in Cognitive Function. These groups were charged with collecting input from stakeholders to: (a) Inform planning, (b) identify emerging research areas (c) assess gaps and duplications in existing research and (d) to make recommendations to strengthen the federal research agenda.

Each break-out group was asked to identify what consumers, providers and experts in cognitive performance/function were saying about their need for technology products and services. What was driving those needs? How are those needs communicated to researchers and innovators? An environmental scan was completed by each cohort to identify what is happening in the U.S. and elsewhere in technology to improve cognitive function (TICF) and who was involved in this activity. Trends in research and development along with funding and investing, marketplace activity and university technology transfer functions were also discussed. Each group was challenged to provide problem statements and recommended actions for the future.

I Technology accessibility standards/cognitive accessibility in the built environment

 

This group was composed of people with a wide variety of experience in both government and the private sector. They determined four problem areas and provided recommendations for each.

1. Problem Statement: Presently there is an over-generalization of solutions for multiple divergent populations of persons with cognitive disabilities.
   1. Recommendation: Characterize the population of people that are included when referring to cognitive disabilities. Conduct an assessment of people with cognitive disabilities that stresses the need of the stakeholders for:
      1. Communication
      2. Access
      3. Retrieval of information
   2. Recommendation: Prioritize issues and needs: Is it more important to know how to get directions to get on the bus; or is it more important to receive prompts for feeding oneself?
   3. Recommendation: Examine clusters of issues to determine which stakeholder groups have which issues in common to guide prioritization among research funding.
2. Problem Statement: General standards tend to overlook disability criteria and harmony is often lacking between standards. There is also inconsistency in the inclusion of cognitive disability design standards.
   1. Recommendation: Identify existing standards that have implications for, or address cognition, with an emphasis on technology and the built environment. This can include everything from information technology for making Web pages accessible to built environmental standards on Wayfaring and signage.
3. Problem Statement: People with cognitive disabilities cannot always understand information as typically presented. Best practices for communicating with people with cognitive disabilities has yet to be determined.
   1. Recommendation: This is a broad question with a broad answer that includes design features. Research is needed to determine how much complexity can be contained within the design process. Are designs and information currently too complex or too detailed? Research is also needed to determine how multi-modal approaches can be utilized to present information effectively.
4. Problem Statement: Cognition features are not fully integrated into design. There is an insufficiency of standards and the standards that exist are not enforceable. What are the best methods for testing standards?
   1. Recommendation: Determine valid testing methods for accessibility standards for people with cognitive disabilities. Testing must be done through a series of highly refined protocols.

II Research and development in technology to improve cognitive function

 

This group was comprised of medical and technology researchers, academics, industry leaders and other interested individuals. Their work was summarized in four problem statements and a number of recommendations.

1. Problem Statement: The terms basic and applied research are not necessarily appropriate when defining the research needs for persons with cognitive disabilities and are potentially divisive. For example, one can do basic research on an applied problem.
   1. Recommendation: While this group did not determine alternate names, there was consensus to place effort in finding better and more descriptive terminology. Whatever money is being spent on research in this area should be spent across the continuum of basic to applied research. The research community should demonstrate to the public that progress is being made and people are being helped right now. Yet, there is also a need to do research long-term and money needs to be spent along that continuum.
2. Problem Statement: There is little technology available for people with cognitive impairments.
3. Problem Statement: Cognitive demand in our lives is increasing and there is a larger variability in the community in reference to who can handle this increased demand. The need for cognitive support will become more and more obvious.
4. Problem Statement: There is little known about the neurobiological basis for cognition. While the imaging community has shown what parts of the brain are doing a particular function, there is little understanding about how the brain computes.
   1. Recommendation: The field must be better defined so that people in cognitive disability research are seen more clearly as a community. For example, there should be an increase in peer review participation; and a change in the topics for grant Requests for Proposals and Small Business Innovation Research priorities so they better fit the needs of the field of cognitive disabilities.
   2. Recommendation: Given the field's interdisciplinary nature, it is hard to determine where the work should be published (e.g., a bioengineering journal or a neuroscience journal), creating a loss of identity. High quality peer reviewed journals must encourage cognitive enhancing technology groups or cognitive enhancing research as a priority for publications.
   3. Recommendation: There is a need for a champion for cognitive disabilities and an effective spokesperson for the field in the manner that Christopher Reeve was an effective spokesperson for spinal cord injury.
   4. Recommendation: There needs to be much more time spent with the vendor community so they know what is coming down the pipeline and can provide influence to ensure technology transfer.
   5. Recommendation: It would be useful to develop best models or practices for working across disciplines and between the research and business communities. For example, publish a success story on multi-disciplinary teams.
   6. Recommendation: Develop and encourage new training and education programs for graduate students in the interdisciplinary/transdisciplinary model(s) that researchers actually work in.
   7. Recommendation: Funding agencies and their programs must be more fully aligned with and request research and development projects that researchers can and want to deliver. They must also create opportunities to bring businesses and researchers together to work on common programs, creating devices that can be transferred to commercial enterprises. While NIH and NSF are moving in this direction, they and other agencies need to expand this translational theme to be more effective in meeting goals.
   8. Recommendation: There needs to be more studies and technologies developed to understand how the brain codes, stores and computes information in order to develop new medical devices to facilitate these activities for persons with cognitive impairments.

III Technology to improve cognitive function and aging issues

 

This group was comprised of nationally recognized experts in cognitive functioning and aging. They identified four problem statements they felt require strong attention.

1. Problem Statement: There is a need for early or pre-clinical detection of cognitive impairment or decline that may enable effective early intervention or prevention of Alzheimer's or cognitive impairment. Since Alzheimer's/Dementia is recognized as a large problem and better defined than cognitive disability in general, it may be the place to start in determining cognitive impairment or decline.
   1. Recommendation: Further research in technology applications for early detection of cognitive decline:
      1. Initial focus on Alzheimer's related cognitive impairment,
      2. University-based research: NIH, NSF research solicitation foci,
      3. Private Sector research: SBIR, STTR solicitation foci. These incentives are insufficient however, because of the need for longitudinal studies. To address this issue consider: Federal legislation fostering efficacy demonstration projects and industry-university collaboration,
      4. Piggyback detection studies on long-term aging cohort studies,
      5. Research criteria for detection must:
         1. Be non-invasive;
         2. Support rapid evaluation;
         3. Be a low burden for stakeholders (users, clinicians);
         4. Be a low risk;
         5. Be valid and reliable;
         6. Evaluate within context of “normal activities” of daily living (e.g., behavioral observation methods), visit to ophthalmologist (e.g., brain stem function reflected in eye saccades), doctor's visit (e.g., routine medical exam with screening for cognitive impairment);
         7. Be low-cost.
2. Problem Statement: Technology imposes the prospect of loss of privacy and independence (control).
   1. Recommendation: Provide education, research and training on issues of privacy to promote and continue independent behavior.
   2. Recommendation: To explore/research privacy, its status, issues, problems, and opportunities with its overarching impact on cognitive function and aging.
3. Problem Statement: There is not a well established evidence base for the efficacy, cost and comparative clinical effectiveness and usability of cognitive technology for improving or enhancing the quality of aging.
   1. Recommendation: Support environmental scans and research syntheses of best practices in order to develop an understanding of the role of technology in enhancing aging within the context of the community and other appropriate environments.
   2. Recommendation: Support the development of strategies to develop a health behavioral model to describe the influence of cognitive technologies on the aging process.
   3. Recommendation: Establishment of an expert panel to consider public input and suggest specific areas/topics of research. Some of this research could be done on a faster track than research supported by random controlled trials.
   4. Recommendation: Support the translation of research findings into simple and actionable language for all stakeholders.
   5. Recommendation: Research, evaluate, define, and establish measures, methodologies, standards and models for evaluating the efficacy, cost and comparative clinical effectiveness, and usability of cognitive technology for enhancing the quality of aging.
4. Problem Statement: Develop technologies for the prevention of cognitive decline. This is based on strong anecdotal evidence that physical movement connected to mind exercises can stimulate the mind and offset cognitive decline. A more substantial hypothesis underlies the theory of “cognitive capacity or reserve,” which represents an opportunity for preventative interventions and cognitive decline.
   1. Recommendation: Need for basic research to explore the area. This is a high risk research area, e.g., looking at the relationship between brain states and cognitive outcomes. There is a need for longitudinal research to evaluate impact of interventions.
   2. Recommendation: Aim is to develop preventative strategies/technologies to offset cognitive decline:
      1. Need for basic research to understand cognitive capacity/reserve;
      2. Need for research to define methods/techniques to offset cognitive decline, e.g., the potential role of technologies to stimulate the mind.

IV Technology to improve employment and education in cognitive function

 

This group was also composed of numerous experts from throughout the U.S. interested in improving access to employment and education for persons with cognitive disabilities.

1. Problem Statement: This group determined there was a critical need to understand what makes the world accessible to a person with cognitive disabilities.
   1. Recommendation: Convene a panel of stakeholders to include people with cognitive disabilities, policy makers, educators, employers, and industry representatives to formulate a definition of cognitive disability that is similar to what has been done in the built environment.
   2. Recommendation: Legislation such as Section 508 should establish standards that fully address the needs of persons with cognitive disabilities. These standards can be a tool to establish research directives and standards for all federally funded proposals.
   3. Recommendation: Once developed, these standards should apply to all legislation and should be adopted by state governments and promoted to industry as a market driver that will benefit all consumers.
   4. Recommendation: The following core set of principles should be reflected in all research and submitted to the government on behalf of all people with cognitive disabilities:
      1. Self-determination;
      2. Independence;
      3. Personal responsibility;
      4. Self-awareness;
      5. Universality;
      6. Transferability.
   5. Recommendation: General federally-funded research submitted/conducted that addresses larger issues including employment and education should include people with cognitive disabilities.
   6. Recommendation: There should be consumer involvement in research through Participatory Action Research and evidence-based research, especially as it applies to educational effectiveness and employment.
   7. Recommendation: Additional research areas:
      1. Cost benefit analysis of universal/trans-generational design vs. traditional design;
      2. Cost-benefit analysis of implementing existing technologies for people with cognitive disabilities;
      3. Convene a panel of consumers, education, employment, industry and other key stakeholders for the further development of this research agenda.
      4. Encourage our industry partners to consider their own pursuit in implementation of these recommendations.

The break-out sessions provided ample opportunity for discussion and conceptualization of numerous higher order considerations. For example, the need to facilitate broader research agendas; organizational issues ranging from recommendations to incorporate self-determination to the need for enhanced publications and organization of the research community were all brought forth. The Technology to Improve Cognitive Function (TICF) conference provided a collaborative and mutually respectful environment for these efforts and the working groups look forward to implementation of these recommendations.

Acknowledgement

A special thank you to Barbara Rosen, CESSI, 6858 Old Dominion Drive, Suite 250, McLean, VA 22101, for her work in transcribing the notes from the break-out groups, and for her unflagging energy.

Reference

 

• 1. U.S. federal Interagency Committee on Disability Research (ICDR) Subcommittee on Technology (IST), 29 - 30 June 2006 http://www.icdr.us/cognitive/materials.htm Technology for Improving Cognitive Function Author , Washington, DC — Retrieved: 28 August 2006 from: http://www.icdr.us/cognitive/materials.htm