Im happy to have the opportunity to comment on a research agenda

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					I’m happy to have the opportunity to comment on a research agenda for the ICF. I’m
disappointed, however, that at the last minute I wasn’t able to be with you to hear the
papers and the discussion. My thanks to Marjorie Greenberg for filling in for me.

I think it’s fair to say that over the past decade there has been a profound change in how
we in health statistics and allied fields think about and formulate health status. A decade
ago the focus was on mortality, morbidity, and disability; today, the concept of
functioning is in a principal position along with morbidity and disability. This shift is
consistent wit the drive toward more outcomes-based medicine. Of course, functioning is
a broader concept than disability—it’s a concept related to what we are trying to achieve
rather than a focus on the cause of less than perfect functioning.

Based on the materials I’ve seen and discussions with Marjorie, Paul Placek and Jennifer
Madans I feel that I can offer at least some preliminary thoughts regarding research
direction. I found my discussions with all my colleagues very useful. I also want to
single out Sandy Smith of our NCHS staff who has a way of seeing the critical points in a
wide variety of topics. I’ve also reviewed a draft research framework that Paul and
colleagues produced and reviewed notes from the papers presented.

I’m impressed at the number of different topics presented in this meeting. We, or more
precisely, you have seen papers on applications, both clinical and administrative, and
work comparing existing measures to one another and to the ICF itself. In addition, there
was discussion of survey applications and training issues and tools. And there’s been
discussion comparing the results of using ICF across countries. And I know I haven’t
captured the full agenda.

Regarding a research agenda, it is not premature to prioritize research topics. Despite
ICF’s young age, and more to the point, because of its young age, an allied research
program is essential to help it develop into a mature tool to support research and
applications to improve functioning.

One of the more intriguing aspects of the ICF is its application can produce a number of
codes, each characterizing a specific aspect of functioning—but the sum total is more
than the sum of the parts. In other words, the sum total of functioning can be viewed as a
synergy of all the elements and not simply the listing of each of the coded conditions.
This is in contrast with the ICD, for example, in which the synergy of the individual
causes is not captured in the ICD other than by listing causes in order of their impact.
Therefore, a critical question is whether the framework of the ICF is adequate to capture
this synergy of elements of functioning.

Therefore the first, and I believe the most important research question is:

   1. Adequacy of the framework: Does the ICF approach of b, s, d and e plus
      qualifiers adequately capture functioning in the sense that using this framework is
      helpful or insightful in a variety of applications and conditions to improve
   functioning. Complexity—Functioning has so many concepts. This framework
   attempts to include all of them in a single set of codes. Is this practical and
   useful? Research needs to focus on evaluation of whether the approach captures
   functioning in a way that is useful to those designing facilities, designing aids,
   facilitating the workplace, and if not, how to improve the framework. Some
   specific sub-questions are as follows:

       a. Application—Are practitioners satisfied with their use of the ICF?

       b. Qualifiers: [None, Mild, Moderate, Severe, Complete] The qualifiers are
          defined in what I see as fairly subjective terms or in terms of percentages
          meaning that the reporter needs to understand how the subject fits into a
          distribution. I would like to know the reliability and validity of these
          critical judgments.
       c. Expansion: Does the structure need to be expanded or reformulated to
          capture functioning? Are the sections on barriers and facilitators in the
          environment adequate?
       d. Barriers: What barriers have been identified to full and effective
       e. Capacity, performance and assistance and their combinations: Is the use
          of these concepts adequate to capture potential improvements in
          functioning. Is this a practical approach? Are there ways of minimizing
          subjectivity? Is training feasible and wealth of allied questions related to
          training. In sum the reliability and validity of the concepts needs to be

2. Relationship to other specialized and traditional coding systems.
      a. We need to evaluate how the ICF relates to other systems and how they
          can be used together to expand knowledge of functioning. For example,
          how has the ICF been adopted by various professions (occupational
          therapists for example in the evaluation of assistive technologies)?

3. ICF and the aging population: Is ICF adequate to be used to improve functioning
   in this critically important population?

4. Comparison of different populations: Can ICF be applied to
   evaluate/assess/identify functioning comparing different settings, cultures,
   countries, and populations? For example, with its strong environmental and
   contextual measures what perceived differences and unrecognized differences
   affect the use of the ICF and the data produced?

5. How can technology improve the ICF Impact of technology? For example, can
   the ICF be implemented in onsite handheld devices? How will this
   affect/improve clinical practice or research in the short-term and what are the
   long-term implications?
   6. Training and support: What types of training materials, manuals, procedural
      guidelines are needed to support the ICF?

   7. Surveys, Administrative data and other data collection: How can the information
      needed by the ICF be integrated into various on-going or periodic data collection
      systems and/or surveys?

   8. Ongoing maintenance and modification of the ICF: Processes, and in particular,
      how can research results be integrated into the process?

In sum, I think research is essential to help us evaluate and as necessary improve the ICF.
Moreover this research will help us understand functioning and its key place in the vector
of concepts that constitute health status and well-being.

Again, my thanks to Marjorie Greenberg for delivering these comments as well as to Paul
Placek, Marjorie, and Sandy Smith of NCHS for some very helpful discussions.

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