Request for Information (RFI): Input on Availability of Resources and Strategies to Encourage Outcomes and Health Services Research in Deafness and Other Communication Disorders

Notice Number: NOT-DC-12-006

Key Dates
Release Date: January 3, 2012

Issued by
National Institute on Deafness and Other Communication Disorders (NIDCD)

Purpose

The NIDCD is seeking information on the availability of existing resources and strategies to encourage and expand outcomes and health services research in the NIDCD mission areas of hearing, balance, smell, taste, voice, speech and language.  Input is being sought from researchers and scientists from academia, industry and government, representatives of scientific and professional organizations, health care organizations, patient organizations and advocacy groups, and other interested parties.

Outcomes research seeks to determine to what degree an intervention works in patients/populations in general, real-world settings, such as in diverse populations among varying provider and clinical practice settings.  The goal is to improve patient-centered outcomes.  Outcomes research is particularly interested in quality of life, patient experience and satisfaction with health care, and social and economic consequences of care.  

Health services research examines the impact of organization, financing and management of health care services on the delivery, quality, cost, access to and outcomes of such services. Health services research also seeks to disseminate effective health services into community practice.

Background
One of the missions of the NIDCD is to improve the health outcomes of individuals with deafness and communication disorders.  This requires an efficient and effective translation of clinical research findings into real-world clinical practice.  This translation best occurs through rigorous applied research investigations of outcomes and health services (O/HSR).  Accordingly, NIDCD seeks to increase its support of O/HSR. This RFI requests community input on currently existing resources that may be used or leveraged to support O/HSR in the NIDCD mission areas.  It also requests information on strategies to encourage and expand collaborations between O/HSR researchers who have expertise outside the traditional NIDCD mission areas (such as, health services, health outcomes, economics, statistics, biostatistics, data management, health care financing and organization, survey research, epidemiology, evaluation, public health and policy) and investigators with expertise in the NIDCD mission areas.  The intended purpose of such collaborations is to identify areas of shared interest for future applied research grant applications in O/HSR relevant to the NIDCD mission areas.

Input Requested
The NIDCD is committed to increasing research in O/HSR.  Comments on the following issues are sought:

1.  Currently existing and available resources containing information directly related to the NIDCD mission areas that could be used for O/HSR.  These resources may include databases (e.g.,  research databases, health expenditure databases, reimbursement databases) that currently contain data related to NIDCD mission areas; research or community practice-based networks; funded centers providing planning, infrastructure, training and research support to individual investigators seeking to refocus their research in O/HSR;

2.  Currently existing resources not containing information directly related to the NIDCD mission areas, but could include or support O/HSR in the NIDCD mission areas with infrastructure expansion and enhancement.  These resources could include registries, databases, practice-based or other research networks, or outcomes research resources (such as centers currently providing advice on research design and measurement tools available to a specific section of the scientific community);

3.  Ways to encourage broad sharing of data generated in clinical and epidemiologic studies regardless of size, for the purpose of consolidating/compiling databases for O/HSR studies. This may include ways to promote data sharing while remaining sensitive to protection and confidentiality issues, as well as examples of data sharing you have used/participated in that you found to work very well or found to be particularly problematic;

4. Specific areas for focus or initial steps/activities that could be conducted to increase the probability of success in establishing programs of O/HSR in NIDCD mission areas;

5.  Unique infrastructure, resource, or training needs for O/HSR in NIDCD mission areas;

6.  Specific opportunities or unique barriers and challenges and innovative solutions to address these challenges that NIDCD should consider in encouraging O/HSR; and

7.  Any other comments or recommendations on pertinent issues not listed above.

General Information
Please identify the nature of your interest (e.g., if you a member of a particular advocacy or professional organization or if a researcher please indicate your main area of investigation).

How to Submit a Response
Comments will be accepted through March 15, 2012.   All comments must be submitted electronically to the following email address:  RFI@nidcd.nih.gov   You will receive an electronic confirmation acknowledging receipt of your response, but will not receive individualized feedback.  Responses to this RFI are voluntary.  Any identifiers (e.g., names, institution, e-mail addresses, etc.) will be removed when responses are compiled by NIDCD.  Only the de-identified comments will be shared internally with NIDCD staff members and any scientific working groups convened by the NIDCD, as appropriate.  Proprietary, classified, confidential, or sensitive information should not be included in your response.  The Government reserves the right to use any submitted technical information in any resultant solicitation(s).

This Request for Information (RFI) is for information and planning purposes only and should not be construed as a solicitation or as an obligation on the part of the Federal Government, the National Institutes of Health (NIH), and/or the National Institute on Deafness and Other Communication Disorders (NIDCD).  The NIH and/or the NIDCD does not intend to make any awards based on responses to this RFI or to otherwise pay for the preparation of any information submitted or for the Government's use of such information.  Responding or not responding to this RFI does not preclude participation in any related future solicitations.  NIDCD appreciates your input.

Inquiries

Please direct all inquiries to:

Amy Donahue, Ph.D.
Division of Scientific Programs
NIDCD/NIH
6120 Executive Blvd  EPS 400C
Rockville, MD, 20892
Phone: 301 402-3458
Email: donahuea@nidcd.nih.gov


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