Proposed Stakeholder Invitations Sept 20

Subject Matter Expert Stakeholder Invitation

Hello {Name},

The Health Resources and Services Administration (HRSA) within the U.S. Department of Health and Human Services, is the primary federal entity responsible for oversight of the nation’s organ and blood stem cell transplant systems. Sponsorship of a national survey regarding the American public’s donation attitudes and practices is one of the services that HRSA provides for the donation and transplantation community. Previous National Surveys on Organ Donation Attitudes and Practices (NSODAP) were conducted during 1993, 2005, 2012, and 2019. HRSA awarded a contract to Altarum Institute to conduct the upcoming 2024 survey in. Similar to the 2019 survey, we will administer the 2024 survey by telephone and online in English and Spanish.

To prepare for this survey, we are seeking your suggestions as a subject matter expert in the field of organ donation and transplantation on the following items:

• New questions on previous or emerging topics to consider adding to the upcoming survey;

• Questions/topics that are no longer relevant nor require continued tracking moving forward; and

• Questions/topics we should retain in the 2024 survey.

Please respond to the questions below, sharing general concepts or specific survey questions that we should consider for inclusion in the next survey. While providing input, please be mindful that the target audience for the survey is a sample of the general American public, and not transplant professionals.  Also, note that changes to the survey instrument are constrained by two requirements: 1) the survey must be of a length that can be reasonably administered within 20 minutes; and 2) any deletions or rewording of existing questions would present a barrier to the longitudinal assessment of trends. Nonetheless, we value your thoughts regarding questions or themes that may possibly be replaced or new ones to potentially be inserted.

1. Are there any subject areas not included in the 2019 NSODAP that you recommend adding to help experts and researchers better understand and promote organ donation?

2. Are there any questions from the 2019 NSODAP that you recommend we edit?

3. Are there any questions from the 2019 NSODAP that you recommend we remove?

4. Do you have any other feedback about the 2019 NSODAP that could assist in the development of the 2024 NSODAP?

The 2019 NSODAP is available online and is attached to this message. The survey begins on page 197 of the report. More information about the NSODAP is also available.

If we develop any new questions related to your feedback, we may email the question for additional feedback on the final wording. After we develop the survey instrument, we will also ask for your feedback on developing the report.

We look forward to your input and thank you in advance for your assistance.  Please send your comments to [insert email address] by ??/??/??. If you have any questions, please feel free to contact Chris Duke at ……

Gratefully,

Chris Duke, PhD

Project Director, National Survey of Organ Donation Attitudes and Practices

HRSA Contract Number 47QRAA18D001D

Altarum

C | 734.478.0944

Proposed Subject Matter Experts for Stakeholder Panel:

J Daryl Thornton Case Western Reserve University

Elisa Gordon Vanderbilt University

Thomas Feeley Buffalo University

Laura Siminoff Temple University

David Bosch Gift of Hope Organ & Tissue Donor Network

Sean Fitzpatrick New England Donor Services

Jason Siegal Claremont Graduate University Specialty in Hispanic populations

Kimberly Arriola Emory University Specialty in Black/AA populations

Sumit Mohan Columbia University Specialty in Asian populations

Proposed Organizations for Stakeholder Panel:

Organ Procurement and Transplantation Network – Patient Affairs Committee

The National Kidney Foundation

American Society of Transplantation

National Living Donor Assistance Center

Donate Life America

Association of Multicultural Affairs in Transplantation

Eye Bank Association of America

Association of Organ Procurement Organizations

American Association of Tissue Banks