Understanding the High Prevalence of Low-Prevalence Chronic Disease Combinations: Databases and Methods for Research. 4. Methods

09/20/2013

Our methods for addressing the four research questions included a review of the peer-reviewed and grey literature, convening a Technical Advisory Group, and interviewing key informants.

TAG Member Agencies

  • Agency for Healthcare Research & Quality
  • Centers for Disease Control and Prevention
  • Centers for Medicare & Medicaid Services
  • National Institute on Aging
  • Office of the Assistant Secretary for Health
  • Office of the National Coordinator

Abt Associates conducted a review of the peer-reviewed and grey literature related to prevalence of MCC, disease combinations, diagnosis coding, and databases and analytic techniques that have been used to conduct chronic disease research. Our detailed MEDLINE search strategy can be found in Appendix A. The purpose of the literature review was to identify MCC research studies and methods papers on multimorbidity research. Studies that focused on individual chronic diseases were excluded from the review. The results of the review are found in Sections 6 and 7 of the white paper.

To advise the project, Abt Associates and ASPE organized a Technical Advisory Group (TAG), which was comprised of MCC experts from a variety of different HHS agencies. A list of the TAG members and their affiliations is contained in Appendix D. On December 18th, 2012, Abt and ASPE conducted an in-person meeting with the TAG. The objectives of the meeting were:

  1. To discuss the initial findings from literature and database reviews related to less prevalent combinations of MCC, as well as the search strategy itself.
  2. To generate a list of potential databases and methods that could be used to study less prevalent combinations of chronic conditions, and to discuss the challenges and limitations of these approaches.
  3. To identify additional peer-reviewed articles and grey literature, and databases that were relevant for the project.

During the meeting, TAG members provided insightful comments and feedback that were later directly incorporated in the study. On May 10th, 2013, the TAG was convened for a second meeting to review and provide edits and suggestions on the first complete draft of the white paper, that were later incorporated.

To further inform study of the long tail, Abt and ASPE conducted key informant interviews with seven individuals representing various stakeholder perspectives. A list of key informants can found be found in Appendix E. Each of the individuals was asked to share his or her perspective and knowledge regarding MCC research, studying less prevalent combinations of MCC, and priorities for MCC research moving forward. The information gleaned from key informants is integrated throughout the report.

Key Informant Interview Perspectives

  • Health Services Research
  • Insurance Providers
  • Grouping Systems
  • Large-scale Demonstrations
  • Patient Advocacy & Activation
  • Rare Disease Research
  • Clinician

Additionally, Abt Associates conducted a detailed review of 17 databases that may potentially be used for MCC research on less prevalent MCC, as well as 14 diagnosis grouping systems that can be used to categorize diagnosis information for MCC research. A more detailed description of these reviews can be found in Sections 7 and 8.

 

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