MyEyeSite phase 2: safe sharing of data between rare eye disease patients and clinicians under social distancing

MyEyeSite是Loft Digital、Moorfields眼科医院和UCL眼科研究所的合作项目，旨在解决患者、临床医生和医学研究人员之间获取和共享临床罕见疾病数据的关键问题。由于Covid-19，这些问题变得更加紧迫。虚拟诊所现在是专家和病人之间唯一的互动方式。在一段时间内，限制易受感染患者的旅行将仍然很重要，但目前还没有合适的系统让罕见病专家通过数字方式获取患者的详细技术临床数据，以便进行虚拟预约。目前的工作流程以面对面的诊所为基础，易受伤害的视力受损患者必须经常长途跋涉前往诊所。临床医生依赖于患者带来其他预约（可能发生在许多年前）的数据，这些数据是患者当时应该收集和整理的。值得注意的是，由于患者同意的后勤工作，NHS内部链接和分发这些数据的努力失败了。MyEyeSite旨在通过赋予患者在GDPR下的权利来解决这一问题，以数字化方式要求、访问、收集、管理和分享他们的临床数据。MyEyeSite将以一种安全、结构化和系统化的方式为患者提供工具。它还将为医生提供一个安全访问共享数据的界面，例如在虚拟预约之前。在适当的时候，MyEyeSite将为医学研究提供接口，以便在获得适当的患者同意的情况下访问数据，从而加速发现。MyEyeSite的第一阶段是可行性研究和原型，由英国健康数据研究中心资助，研究问题空间，设计和测试潜在的解决方案，并进行市场研究。我们让患者、医生和研究人员作为合作者，开展了广泛的用户研究和协同设计冲刺，举办了公众病人日，以收集更多对正在进行的工作的投入，并与业界合作，探索长期可持续发展的选择。在第二阶段，我们现在希望通过将患者和临床医生界面从原型推进到现场生产使用，快速跟踪MyEyeSite研发计划的要素，以应对Covid-19引发的关键问题。通过这样做，我们的目标是使临床医生能够在大流行期间为这一弱势群体提供更高质量的护理，并推进英国罕见病能力的重要长期创新。影响扩展资金将用于将目前的试点项目延长至2021年1月底，并根据试点项目收到的反馈开发新功能，使医院能够将罕见疾病数据直接传递给MyEyeSite内的患者，而无需患者自己这样做。

MyEyeSite is a collaboration between Loft Digital, Moorfields Eye Hospital, and UCL Institute of Ophthalmology, that seeks to address critical issues in access and sharing of clinical rare disease data between patients, clinicians and medical researchers.These issues have become more pressing because of Covid-19. Virtual clinics are now the only way of interaction between specialists and patients. Limiting travel for vulnerable patients will remain important for some time, yet no suitable system is in place for rare disease specialists to access patients' detailed technical clinical data digitally for a virtual appointment. The current working processes are based around in-person clinics, which vulnerable, sight-impaired patients must travel to attend, often over long distances. Clinicians depend on patients bringing with them data from other appointments (that may have occurred many years ago) and which the patient is expected to have collected and curated at the time. It is worth noting that NHS internal efforts to link and distribute this data have failed, due to the logistics of patient consent.MyEyeSite aims to resolve this issue by empowering patients, through their rights under GDPR, to request, access, collect, manage and share their clinical data as they wish, digitally. MyEyeSite will provide tools for patients to do this in a safe, structured and systematic way. It will also provide an interface for doctors to safely access shared data, for example ahead of a virtual appointment. In due course MyEyeSite will provide interfaces for medical research studies to access data - with appropriate patient consent - to accelerate discovery.The first phase of MyEyeSite was a feasibility study and prototype funded by Health Data Research UK to research the problem space, design and test potential solutions, and carry out a market study. We engaged patients, doctors and researchers as collaborators, carried out extensive user research and collaborative design sprints, held public patient days to garner wider input into work in progress, and engaged industry to explore long term sustainability options.For the second phase we now want to fast track elements of the MyEyeSite R&D programme that will respond to critical issues stemming from Covid-19, by progressing the patient and clinician interfaces from prototype to live production use.In doing so we aim to enable clinicians to provide a better quality of care to this vulnerable group during the pandemic, and also progress an important long term innovation for UK rare disease capability.The Extension for Impact funding will be used to extend the current pilot programme to the end of January 2021, and to develop new functionality in response to feedback received from the pilot programme, that will enable hospitals to transfer rare disease data directly to patients within MyEyeSite, removing the need for patients to do this themselves.