Khurshid Anjum, Harrell Daniel Toshio, Li Dennis, Hallmark Camden, Hanson Ladd, Viswanathan Nishi, Carr Michelle, Brown Armand, McNeese Marlene, Fujimoto Kayo
Harvard Medical School and Harvard Pilgrim Health Care Institute, Boston, MA 02215, United States.
University of Texas at Austin-Dell Medical School, Austin, TX 78712, United States.
JAMIA Open. 2024 Dec 19;7(4):ooae140. doi: 10.1093/jamiaopen/ooae140. eCollection 2024 Dec.
Pre-exposure prophylaxis (PrEP) is a key biomedical intervention for ending the HIV epidemic in the United States, but its uptake is impeded by systemic barriers, including fragmented workflows and ineffective data coordination. This study aims to design PrEPLinker, a blockchain-based, client-centered platform to enhance care to address these challenges by improving care coordination and enabling clients to securely manage their identity and PrEP-related data.
Using Houston, Texas, as a use case, we conducted a needs assessment with PrEP collaborators to evaluate existing workflows and identify barriers in the PrEP care continuum. Based on these findings, we designed PrEPinker, a blockchain-based identity framework and digital wallet using self-sovereign identity and verifiable credentials (VCs). These features enable clients to securirely control their identity data and facilitate efficient, privacy-serving data sharing across PrEP service points, such as community testing sites, clinics, and pharmacies.
The needs assessment identified significant gaps in data exchange for PrEP referrals and follow-up appointments. In response, PrEPLinker was designed to incorporate decentralized identifiers-unique, secure digital identifiers that are not linked to any centralized authority-and VCs for ensuring seamless transfer of digital medical records. Preliminary usability testing with 15 participants showed that over 70% rated the interactive design positively, finding it easy to use, learn, and navigate without technical support. Additionally, more than 80% expressed confidence in using the blockchain based platform to manage sensitive health information securely.
Blockchain technology offers a promising, client-centered solution for addressing systemic barriers in PrEP care by improving data cordination, security, and client control over personal health information. The design of PrEPLinker demorates the potential to streamline PrEP referrals, follow-up processes, and data managent. These advancements in data coordination and secruity could improve PrEP uptake and adherence, supporting efforts to reduce HIV transmission in Houston and beyond.
暴露前预防（PrEP）是美国终结艾滋病流行的一项关键生物医学干预措施，但其推广受到系统性障碍的阻碍，包括流程碎片化和数据协调不力。本研究旨在设计PrEPLinker，这是一个基于区块链、以客户为中心的平台，通过改善护理协调并使客户能够安全地管理其身份和与PrEP相关的数据，来加强护理以应对这些挑战。
以得克萨斯州休斯顿市为例，我们与PrEP合作方进行了需求评估，以评估现有流程并确定PrEP护理连续过程中的障碍。基于这些发现，我们设计了PrEPinker，这是一个基于区块链的身份框架和数字钱包，采用自我主权身份和可验证凭证（VC）。这些功能使客户能够安全地控制其身份数据，并促进在PrEP服务点（如社区检测站点、诊所和药店）之间进行高效、注重隐私的数据共享。
需求评估发现PrEP转诊和随访预约的数据交换存在重大差距。作为回应，PrEPLinker被设计为纳入去中心化标识符（独特、安全的数字标识符，不与任何中央机构相关联）和VC，以确保数字医疗记录的无缝传输。对15名参与者进行的初步可用性测试表明，超过70%的人对交互设计给予了积极评价，认为无需技术支持即可轻松使用、学习和导航。此外，超过80%的人表示有信心使用基于区块链的平台安全地管理敏感健康信息。
区块链技术为解决PrEP护理中的系统性障碍提供了一个有前景的、以客户为中心的解决方案，通过改善数据协调、安全性以及客户对个人健康信息的控制。PrEPLinker的设计展示了简化PrEP转诊、随访流程和数据管理的潜力。这些在数据协调和安全性方面的进步可以提高PrEP的采用率和依从性，支持在休斯顿及其他地区减少艾滋病毒传播的努力。
