Sharing Health Data: The Why, the Will, and the Way Forward (2022)

Chapter: Appendix A: Key Informant Interview Questions

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Suggested Citation: "Appendix A: Key Informant Interview Questions." National Academy of Medicine. 2022. Sharing Health Data: The Why, the Will, and the Way Forward. Washington, DC: The National Academies Press. doi: 10.17226/27107.
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APPENDIX A
KEY INFORMANT INTERVIEW QUESTIONS

NAM Data Sharing Project – Key Informant Interview Questions (updated 8/31/2020)

  1. Overarching rationale/motivation:
    1. What was the motivation for sharing data with this/these group(s)?
    2. What barrier(s) were you specifically seeking to address/ overcome?
    3. What financial or other incentives spurred this arrangement between the partners?
  2. Nature of the Data Sharing
    1. Describe the type(s) of data that are shared
    2. What major facilitators led to the success of your data sharing work?
    3. With whom were data shared, and in what form?
  3. Nature of the Partnership and Stakeholders
    1. Describe the partnership, including the process for decision making, garnering cooperation, and gaining consensus.
    2. Who drove the collaboration, and what level of leadership did you have at the table?
    3. What public commitments were in place?
    4. How did you address resistance?
    5. Were patients at the table and, if so, what role did they play?
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Suggested Citation: "Appendix A: Key Informant Interview Questions." National Academy of Medicine. 2022. Sharing Health Data: The Why, the Will, and the Way Forward. Washington, DC: The National Academies Press. doi: 10.17226/27107.
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  1. Challenges during the Process
    1. Describe the legal and consent arrangements, and how they may have evolved before the data exchange and once the data sharing had occurred.
    2. If a party wanted to remove their data, or withdraw from the data-sharing partnership, what would that look like?
    3. What obstacles did you encounter before/during/after data were exchanged? How were they addressed?
    4. Did you encounter any new challenges once the data sharing had commenced, and if so, how were they resolved?
    5. Was there any regulatory guidance that helped or hindered this work? If so, how?
  2. Looking toward the Future
    1. If you could wave a magic wand, what kind of guidance or policy recommendations would be helpful to ameliorate the barriers to more robust and reasonable data sharing?
    2. What advice do you have for others who want to undertake something similar—a key take home message for others?
Page 117 Cite Bookmark
Suggested Citation: "Appendix A: Key Informant Interview Questions." National Academy of Medicine. 2022. Sharing Health Data: The Why, the Will, and the Way Forward. Washington, DC: The National Academies Press. doi: 10.17226/27107.
Save
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Page 117
Page 118 Cite Bookmark
Suggested Citation: "Appendix A: Key Informant Interview Questions." National Academy of Medicine. 2022. Sharing Health Data: The Why, the Will, and the Way Forward. Washington, DC: The National Academies Press. doi: 10.17226/27107.
Save
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