Identifying AT Research Needs and Setting AT Research Priorities for the Interagency Committee on Disability Research

Presented by Martin Gould
Senior Research Specialist
National Council on Disability

June 26, 2003

Good day. Thank you very much for inviting NCD to participate today. I am Martin Gould, Senior Research Specialist at the National Council on Disability (NCD). NCD is an independent federal agency making recommendations to the President and Congress on issues affecting Americans with disabilities.

What is NCD's approach to identifying research needs and setting research priorities?

In 1996, NCD decided to convene a summit of people with disabilities to discuss how to achieve independence in the next decade. Three hundred grassroots disability leaders were chosen to participate in the summit. From that summit, one of the highest priority research areas that stakeholders identified for NCD was civil rights enforcement. As a result, NCD committed to a long-term research agenda for evaluating and reporting on the status of implementation and enforcement of key laws. This cycle has run from 1999 to 2003. NCD issued 6 reports, and will produce one more to complete the series in its Civil Rights Monitoring Initiative.

We recently began a new cycle of policy research we refer to as "Investing In Independence." The first study in this new cycle dealt with the issue of delinquency prevention and juvenile justice. This research need was identified by a range of stakeholder groups, several NCD Board members, and a preliminary review of the status of evidence-based research. From our initial analysis it appeared that the overall numbers of youth with disabilities at-risk for delinquency and severe consequences (e.g., incarceration, removal from their communities), and the lack of effective interventions, had reached a critical mass at the national level. NCD issued its final report on this important matter on May 1, 2003. Other studies for I.I.I. include consumer-oriented and directed health care reform, and universal design in technology.

The Task Today Is Considerable

You have been asked to review a lot of information and material today (the ICDR survey paper), to listen to people today who have come to share strategies about prioritizing research needs, to bring your constituencies' perspective to the table, and to participate in working groups that draw up a list of research needs>priorities.

Any one of these activities is a challenge. And it doesn't matter how well versed you are on the issues. Ideally, you will have come to today's meeting having carefully digested the ICDR Survey document and, along with your knowledge of AT research and your organization's perspective, be prepared to:

• discuss the merits of complementary and competing research needs and potential priorities,
• discuss the status, extent, results and/or likely outcomes of various federal agencies' AT research initiatives, and
• make some judgments about the strengths and weaknesses, connects and disconnects, barriers and facilitators, to improving the prioritization of AT research by the Federal Government.

And you have been given almost a whole day to accomplish that small feat. How can you focus?

The goals, objectives and principles that drive today's activity

The goals of AT research priorities should be: 

1. to identify and address areas of strength, opportunity or need where an increase in research effort - including collaboration, coordination or investment - would make a significant contribution to national wealth and/or well-being.

2. to determine what shift in research effort is needed, what new or improved research activities are required, and how the targeting of research effort can best be achieved. 

AT research priorities should address areas of particular importance to individuals with disabilities. The priorities should also reflect a 'whole-of-government' focus, which has the potential to improve research, and broader policy outcomes.

The objectives of your work today are likely:

• to identify and address areas of strength, opportunity or need where an increase in AT research effort - including collaboration, coordination or investment - would make a significant contribution to national wealth and/or individuals' well-being
• to determine what shift in AT research effort is needed, what new or improved research activities are required, and how the targeting of research effort can best be achieved

In identifying needs and choosing priorities you and the ICDR can ensure that research needs>priorities>initiatives:

• Point to a national vision for AT research and are aspirational
• Capture the imagination and support of the community-at-large
 
• Are based on excellence and supported by strong basic research
• Stimulate a collaborative approach to solutions
 
• Are multidisciplinary in nature
• Are supported over an appropriate timeframe
• Produce measurable outcomes and evidence

Guiding Questions

Social Benefits
What is the potential of the research for stimulating technological development that can directly affect an individual's quality of life and/or has application beyond a particular set of research needs?
Will the research address unmet AT needs for underrepresented populations? What are those research needs, and in what way(s) will research priorities>initiatives address those unmet needs?

Scientific Merit
What are the key scientific issues related to the AT research need and priority?
Why is the AT research need and priority important or critical to the stakeholder group?
In what way will addressing the AT research need advance our understanding of the role and impact that AT research has on people's lives in the areas of employment, education, health care, and independent living?
What are the particular reasons for proposing these AT research needs? Are there other avenues for addressing these needs?

Programmatic Concerns
Is the AT research and/or priority technologically feasible?
What current and long-term research infrastructure is required to investigate AT research needs and support the priorities?
In what way(s) will key stakeholders (e.g., consumers) participate in the research needs>priorities>initiatives?
In what way(s) would the priority stimulate research and education? What opportunities and challenges will the needs>priorities>initiatives present for consumers, universities, federal laboratories, and industry contractors? What will be the likely impact on federally sponsored science? Can some current AT research activities be curtailed in the AT research is successful?
What are the costs likely to be, by year, to the Federal budget?

One Sequence for Setting Research Priorities

The process of developing priorities for AT research involves can be constructed as a series of distinct steps for selecting and ranking the needs>priorities>initiatives, including:

1. Specify the research possibilities and categories - The first, and often-difficult step, is to specify exactly what will be considered and what will be excluded from the process.

2. Specify the evaluation procedure to be used in priority setting - Evaluation schemes can range from subjective and qualitative approaches to formal, quantitative procedures.

3. Verify category assignments - An initial review will help to verify that proposed research needs or themes meet the requirements you set out for that category (e.g., employment) and are prepared in accordance with specifications you set.

4. Rank categories and assign relative values - Working groups should develop a procedure for ranking the needs, and produce a matrix of priorities.

5. Prepare the agenda and summary document - The relative rankings from step #4 can be converted into an agenda that recommends an order in which the categories and potential research initiatives are to be pursued.

6. Perform a perception check - Here, the working group preparing the priority recommendations should review its work, asking, does this all make sense? Are there any issues left unresolved? Is there a potential for surprises or unexpected adverse consequences?

7. Publish the results - Finally, a report detailing the priority-setting process, the prioritized recommendations or recommended agenda, and a discussion of the implications should be published.

Conclusion

The opportunity you have to help provide guidance to ICDR is significant. Be critical and be open-minded in your work in priority setting. Enjoy your working groups. Thank you for listening.