Stakeholder perspectives on education in aortic dissection.

The Aortic Dissection (AD) Collaborative was established to evaluate patient-centered research priorities in AD. Education was identified as a topic of interest by the stakeholders. The AD Collaborative Education Working Group evaluated existing educational resources and identified areas amenable to comparative effectiveness research. The most important positive qualities of available AD education resources are ease of use, diversity of representation, accessibility, and organization. The most important negative qualities of these resources are non-patient-centered language, promotional themes, and those with limited applicability and accessibility. Through a series of focus groups, the Working Group identified target audiences for AD education and educational material content and critically assessed and prioritized barriers to effective AD education. Both the target audiences and the barriers include clinicians and patients themselves. The Working Group defined initiatives to overcome barriers, to include a comprehensive, universally agreed on AD resource that is updated in real time and making education accessible to all relevant target audiences. The Working Group then prioritized needs for comparative effectiveness research in AD education and determined that clinician education is the top priority for future efforts. The Working Group determined that assessment and evaluation of specific and appropriate screening strategies is the second most important priority. Finally, the Working Group identified patient education as the third most important priority, specifically determining how patients and their support groups learn best, the ideal strategies for information dissemination, and methods of assessing understanding and satisfaction with the education process.

Backpack health reduces data-sharing barriers between the medical community and individuals with rare diseases.

Technology has changed the way we approach medical care: health data is constantly being generated, medical discoveries are progressing more rapidly, and individuals are more connected across the world than ever before. Backpack Health is a global personal health record platform that harnesses the power of technology to connect users to their primary health data sources, the medical community, and researchers. By syncing with existing patient portals, health data can be stored on the Backpack Health platform and easily accessed and controlled by users in one connected interface. Individuals manage and collate their current and past conditions, genetic test results, symptoms, medications, procedures, labs, and other health data. Users are empowered to disseminate their information to clinicians, researchers, foundations, and pharmaceutical and biotechnology companies they connect with through the Backpack Health application. Here, we describe how two rare disease advocacy groups, The Marfan Foundation and Project Alive, utilize Backpack Health to connect with their target populations. Through secure transfer of pseudonymized data, groups can query their members to improve understanding of clinical features and to facilitate meaningful research. Responses to the groups' surveys show strong member engagement with high completion rates and increases in new Backpack Health users when surveys are deployed. Data from these surveys have been published and used to better inform clinical outcomes for treatment trials. By connecting users directly to the foundations, clinicians, researchers, and industry partners working on their condition, Backpack Health is instrumental in fast-tracking medical discoveries and treatment for rare diseases.