Minneapolis, Minn. – Transplant candidates face obstacles in finding a transplant program that transplants patients like them. A new online tool developed by researchers at Hennepin Healthcare Research Institute (HHRI) and the University of Minnesota (UMN) is helping to remove those barriers. The website transplantcentersearch.org allows patients to conduct searches to find transplant centers that best match their individual criteria.
The site was developed for candidates seeking kidney, liver, heart and lung transplants. Data for liver and kidney transplant programs are currently live. Data for heart and lung transplant programs will be available in the future.
This personalized decision guide uses information about the patient’s donor type and medical profile to match factors important to the individual. It uses data from the Scientific Registry of Transplant Recipients (SRTR), a national transplant registry operated by HHRI under contract from the US Department of Health and Human Services.
Warren McKinney, PhD, recently published an article about the web-based tool entitled “Development of a Patient-specific Search of Transplant Program Outcomes and Characteristics: Feedback from Kidney Transplant Patients” in the journal Transplantation Direct. The Principal Investigator and senior author on the project is Ajay Israni, MD, MS, and the other researcher and co-author is Cory Schaffhausen, PhD, both from HHRI. The HHRI team is also working with multiple collaborators at UMN on the transplantation tool.
“Acceptance criteria and waiting times vary by region and program,” said first author McKinney. “The SRTR provides program-specific information, but it is unclear what patients and referring physicians need to know. We aimed to develop a web-based tool that allows patients, families, and stakeholders to conduct patient-specific searches of the SRTR reports to communicate information on program outcomes and characteristics relevant to their individual medical profiles and clinical needs.”
The research team conducted interviews and focus groups in developing the site. Kidney transplant candidates, recipients and family members were shown mock-ups of the tool. Three themes emerged:
- Patients feel that a patient-specific search offers added decision support over resources that are program-specific and do not offer customization.
- Customized search results alter how candidates perceive their access to the waitlist and transplantation.
- Custom search results offer insights into acceptance criteria and patient factors a candidate may change to increase access to the waitlist.
This website was created with extensive patient input as part of a research study funded with a federal grant by the Agency for Healthcare Research and Quality (AHRQ). User feedback about the site will be an important part of this research study, and will be used to make updates and improvements in the future. Users can provide feedback using the online form at transplantcentersearch.org/feedback
The manuscript “Development of a Patient-specific Search of Transplant Program Outcomes and Characteristics: Feedback from Kidney Transplant Patients” is published online in Transplantation Direct as part of the August 2020 issue ((Volume 6, Issue 8). To view the journal article, go to https://journals.lww.com/transplantationdirect/Fulltext/2020/08000/Development_of_a_Patient_specific_Search_of.10.aspx?context=LatestArticles
About the Hennepin Healthcare Research Institute
Hennepin Healthcare Research Institute (HHRI) is the research arm and a nonprofit subsidiary of Hennepin Healthcare System, Inc., a comprehensive health system in Minneapolis. HHRI is one of the largest nonprofit medical research organizations in Minnesota and consistently ranks in the top 10 percent of all institutions receiving research funding from the National Institutes of Health.
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Hennepin Healthcare Research Institute