Improving organ donation in the United States

Overview

From 1986 to 2024, a single private contractor dictated policy, developed technologies, and managed logistics for the entire U.S. organ donation system. Over time, this monopoly led to poor outcomes for organ recipients.

In 2022, Congress and the Health Resources and Services Administration (HRSA) began increasing oversight over the Organ Procurement and Transplantation Network (OPTN). Since 2023, Service Design Collective has worked to support the improvement of organ donation in the United States through a series of projects.

To date, we have:

• Advised the Department of Health and Human Services on the modernization of the OPTN
• Employed a service design approach to help HRSA assert greater control over OPTN processes, data, and technical systems
• Helped the Health Resources and Services Administration hire and empower an in-house digital service team
• Founded a new, independent board of directors to oversee all organ donation policy
• Introduced human-centered design to non-profit organizations to increase the number of living organ donors

Organ Procurement and Transplantation Network system modernization

Timeline

March 2025 - March 2026

Overview

The OPTN modernization effort is a high-profile, high-risk project. It requires coordination between multiple organizations with different goals and objectives, many of whom disagree on the best way to move forward. The OPTN is a critical public service that serves over 100,000 patients waiting for an organ transplant. It does not stop for prolonged policy debates and cannot go offline for technical upgrades.

The organ donor-to-recipient matching process involves complex trade-offs between time, geography, need, and equity. Organ matching policies are set by non-governmental, non-technical medical professionals based on academic and medical case studies with deep moral and ethical implications. In hospitals, organ matching relies on split-second human decision making, under difficult circumstances, while relying on imperfect data, legacy technical systems, and telephone calls.

Approach

We worked alongside internal teams and external contractors to understand the current state of OPTN systems, uncover challenges and impediments, and develop plans to improve the organ donation process. Through direct interactions with users and stakeholders, we were able to provide actionable, research-backed advice to support HRSA’s modernization goals.

We gathered information from qualitative interviews with nearly 50 medical and administrative OPTN partners. We then worked with HRSA through several rounds of discovery and planning to build and adapt a roadmap focused on key components of organ donation technology, patient safety monitoring, clinical oversight, and technical security.

Lastly, we worked closely with HRSA leadership to outline a potential budget for implementation and technical tools and services over a three-year period. This process required regulatory changes to fee collection and procurement, as well as practical implementation challenges. As the project progressed, we revisited budget needs and adjusted our recommendations and estimates based on HRSA’s evolving capabilities and needs.

Outcomes

We advised HRSA through a tumultuous period of change in the OPTN. To date, HRSA has improved services across a number of critical areas, including data collection and public reporting, governance structures, patient safety and clinical oversight, policymaking, fee collection, technical oversight, and security. Notable milestones include:

• The first technical review of contractor-owned OPTN systems in 40 years
• HRSA conducted user research with OPTN members for the first time
• HRSA took direct control over patient safety issues, removing this critical government function from a private contractor
• Congress changed the fee structure for the OPTN, taking fee collection from a private contractor and directing fees to HRSA to increase efficiency and improve oversight

Deliverables

• Project roadmap
• Business case
• Data governance plan
• Strategy documentation
• Budget proposals
• Options analysis
• Data infrastructure

Improving HRSA transplant data service

Timeline

November 2025 - March 2026

Overview

A key barrier to modernizing OPTN technology was a lack of consistent reliable data. Historically, HRSA received large batches of data from the operations contractor. That data was analyzed by a third party to ensure quality and then published in support of organ donation research.

HRSA’s goal was to improve data sharing, ensure transparency and accountability, and provide more efficient data to benefit medical practitioners, patients, and their families.

Approach

SDC coordinated between internal teams and external contractors to build new, cloud-based data infrastructure for HRSA and bring existing data practices in-house. We worked with the third-party data team to understand the current structure and understand the importance of existing automated processes. We worked with a separate contractor to establish new infrastructure and to replicate existing reports.

We ran both the legacy system and new infrastructure to ensure redundancy during the transition period and provided all parties with support throughout the migration process.

Outcomes

HRSA successfully took control of OPTN data. The new system was deployed on time with no interruptions to existing public reporting. New infrastructure improves security, transparency, and availability. It reduces costs and provides HRSA with a reliable, vendor-agnostic foundation on which to modernize other OPTN products and services.

Following the migration, SDC led HRSA’s technical team through a series of workshops to refine their short- and medium-term goals for data collection, processing, and public distribution. Accomplishments include:

• HRSA deployed government-owned infrastructure for organ donation data collection for the first time in 40 years
• HRSA used newly-collected, government-owned data to uncover serious patient safety issues

Deliverables

• Data governance plan
• Strategy documentation
• Budget proposals
• Options analysis
• Data infrastructure
• Data roadmap

Establishing a digital service team at HRSA

Timeline

October 2024 - March 2025

Overview

As part of their ongoing push to modernize organ donation processes and technologies, we helped HRSA leadership create and execute a technical hiring plan to onboard a digital service team. The new team allowed HRSA to begin targeted oversight into OPTN technologies and uncover new insights through human-centered design.

Approach

Under a very tight deadline, we worked with HRSA to identify existing and emerging staffing challenges. We identified key roles and developed position descriptions to meet existing and anticipated needs. We introduced HRSA to the benefits of a digital service team. We conducted a talent search, recruited senior level experts, and helped the government onboard team members.

Outcomes

We researched different Digital Service structures to identify the organizational structure, mission, and approach best suited to HRSA’s goals. Ultimately, we supported HRSA by:

• Helping HRSA hire ten new senior experts, including a Digital Service Director, Deputy Director, and Engineering, Design, and Product leads
• Establishing an organizational structure, reporting channels, mission, and initial project goals

Deliverables

• Digital service research report
• Recommended organizational chart
• Draft position descriptions
• Candidate recruitment
• Eligibility recommendations
• Onboarding support

Establishing an independent board of directors for the OPTN

Timeline

March 2024 - September 2024

Overview

From 1986 to mid-2024, a single private contractor was responsible for both the creation and enforcement of organ donation policy in the United States. Over time, this dual role led to poor outcomes for organ recipients.

In 2022, Congress and HRSA sought to establish an independent OPTN Board of Directors. At HRSA’s direction, SDC established a new, independent non-profit entity to house the OPTN Board of Directors.

Approach

We helped establish legal documentation, management policies, and rules for the new organization. We ensured the new board was appropriately insured and prepared to operate independently.

Once all parties agreed to the new structure, we transferred the existing board members into the new entity and transferred control of the board to the Chairman. Lastly, we established the legal foundation for a special election to replace the existing board with a new slate of directors within one year.

Outcomes

For the first time in its history, the board of directors that oversees organ donation policy is a separate and independent entity from the private contractor running OPTN operations. This shift immediately led to:

• Greater accountability in organ delivery and increased oversight over the organ donation network
• Increased legal protections to the Board of Directors and their volunteer committee members
• In summer 2025, the OPTN successfully held a special election to replace the legacy board members

Deliverables

• Entity establishment plan
• Articles of incorporation
• Corporate bylaws
• Federal and state non-profit certification
• Management and membership policies
• Insurance documentation
• Designation agreement
• Board transition plan
• Areas for further research

Improving living organ donation with human-centered design

Timeline

November 2023 - January 2024

Overview

The National Living Donor Assistance Center (NLDAC) offers financial support to help with transportation, lodging, lost wages, and dependent care costs that may otherwise prevent a person from being a living organ donor.

NLDAC is a constellation of non-profit and academic institutions, including: Arbor Research Collaborative for Health, the University of Kansas Medical Center Research Institute, and the American Society of Transplant Surgeons (ASTS).

NLDAC asked Service Design Collective to:

• Assess their team’s understanding of and capacity for human-centered design (HCD)
• Evaluate the current English language application processes (digital and paper)
• Develop recommendations to improve the application process, back end workflows, and data management

Approach

SDC reviewed prior work and data collected by NLDAC, including transplant center survey results, research protocols, and previous research findings. We conducted interviews with transplant centers to understand how they work with donors, recipients, and the larger NLDAC team. We also conducted a heuristic evaluation of the donor and recipient processes.

We included NLDAC team members in every step of the research and design process. We ran multiple synthesis and ideation workshops with them and conducted a retrospective of the end-to-end process.

Outcomes

We introduced the NLDAC team to HCD concepts and helped them define and prioritize their future design needs. In addition to our final report and recommendations:

• We delivered a landscape analysis to guide future work and a heuristic framework they could continue to re-use to evaluate their progress
• We helped the NLDAC team define a new role to hire an in-house UX designer
• We noted that outdated financial support limitations were discouraging potential donors and complicating the service: In 2026, new legislation (HR 7148) removed income limits

Deliverables

• Research findings and recommendations
• Landscape analysis
• Accessibility review
• Heuristic analysis framework
• Interview transcripts
• Final report