INTUIT: 'Interaction Design for Trusted Sharing of Personal Health Data to Live Well with HIV'

随着与数据的互动日益成为日常生活的固有特征，包括通过健康管理和生活方式跟踪，以及随着用户多样性的增长，公民对信任，身份，隐私和安全（TIPS）的关注似乎将继续增加和演变。至关重要的是，与侵犯个人隐私有关的经历对那些生活在潜在污名化条件下的人来说尤其具有挑战性。然而，人们才刚刚开始了解这些挑战的具体性质和程度。医疗保健提供者和公民越来越认识到生活质量和福祉对长期疾病（LTC）患者的重要性，患者生成的（健康相关）数据用于改善医疗保健的潜力也是如此。提供和此类疾病的管理。然而，个人关于其“健康”和“生活方式”的个人数据的通信以及可能从中得出的推论与身份管理有着千丝万缕的联系。因此，这些数据的披露和处理对那些可能害怕歧视或遭受耻辱的人提出了关键的TIPS问题。该项目旨在确定和解决那些管理被污名化的LTCs的人在管理他们的健康和与护理服务，同伴支持网络和私人组织互动时所面临的基本TIPS挑战。我们将开发新的工具，为人们提供机会和选择，以管理与他人共享他们自己生成的数据。我们将设想创新的服务主张，这些主张基于对共享这些数据的具有挑战性但高度相关的背景的新的经验理解。 通过有效的治疗，人类免疫缺陷病毒（艾滋病毒）已转化为具有正常预期寿命的LTC，但仍然高度污名化。因此，HIV提供了一个特定的临床和社会背景，在此背景下，共享个人数据带来了与解决TIPS问题和障碍相关的重大设计挑战。我们雄心勃勃的工作计划汇集了HIV领域、公共卫生、人机交互设计、健康心理学、健康信息学和应用伦理学的专家，以：设想、开发和评估开创性的可信新工具，使个人能够使用个人数据自我管理自己的病情，与艾滋病毒一起生活和衰老;了解与特定他人（包括医疗保健提供者，社区和私人组织）共享这些数据意味着什么;并确定与TIPS相关的伦理问题，以管理耻辱和福祉。虽然我们的工作计划侧重于艾滋病毒感染者，但它确保了研究这一人群的见解可以转移到其他被污名化的LTC，如精神健康状况。我们的参与式方法使学术和非学术合作伙伴和利益相关者参与定义研究，进行研究并理解结果。这包括：艾滋病毒同行社区的成员及其倡导者;学术临床医生;公共卫生监测和网络安全专家，他们了解与研究相关的TIPS挑战，并且可以涉及通常难以接触的群体，他们可能会或可能不会参与临床护理，确保广泛的参与和后续影响。因此，工作计划基本上是共同制定的。通过设计活动的研究综合了多种观点;设计原型成为探索理解和创新机会的基础。我们的目标是为污名化人群提供对TIPs问题的基本理解，并通过对新系统和服务的包容性设计和评估实现可信的数据共享。这项工作将为医疗保健提供道德框架和负责任的数字创新战略提供信息，使所有公民都能在社会中生活和养老。

As interactions with data become an increasingly inherent feature of everyday life, including through health management and lifestyle tracking, and as the diversity of users grows, it seems likely that citizens' concerns for Trust, Identity, Privacy and Security (TIPS) will continue to increase and evolve. Crucially, experiences related to breaches of personal privacy are particularly challenging for those living with potentially stigmatising conditions. Yet, the particular nature and extent of such challenges are only starting to be understood. The importance of quality of life and well-being for those living with long-term conditions (LTCs) is increasingly recognised by both healthcare providers and citizens, as is the potential for patient-generated (health-related) data to be used to improve healthcare provision and the management of such conditions. However, the communication of individuals' personal data about their 'health' and 'lifestyle', and the inferences that may be made from it, are inextricably linked to identity management. Therefore, the disclosure and processing of such data raises critical TIPS issues for those who may fear discrimination or experience stigma. This project seeks to identify and address fundamental TIPS challenges faced by those managing stigmatised LTCs in managing their health and interacting with care services, peer support networks, and private organisations. We will develop new tools providing people with opportunity and choice for managing the trusted sharing of their self-generated data with others. We will envision innovative service propositions that are grounded in a new empirical understanding of challenging but highly relevant contexts for sharing these data. Through effective treatment, the Human Immunodeficiency Virus (HIV) has been transformed to a LTC with normal life expectancy, but remains highly-stigmatised. HIV therefore provides a specific clinical and social context where sharing personal data presents significant design challenges related to addressing TIPS concerns and barriers.Our ambitious work programme brings together experts in the HIV sector, Public Health, Human Computer Interaction Design, Health Psychology, Health Informatics and Applied Ethics to: envision, develop and evaluate pioneering trusted new tools that empower individuals to use personal data for self-managing their condition, to live and age well with HIV; understand what it means to share these data with particular others, including healthcare providers, communities, and private organisations; and to identify ethical issues associated with TIPS for managing stigma and well-being. Whilst our work plan focuses on people living with HIV, it ensures that insights from studying this population has transferability to other stigmatised LTCs such as mental health conditions. Our participatory approach engages academic and non-academic partners and stakeholders in defining the research, in conducting studies, and making sense of the results. This includes: members of the HIV peer community and their advocates; academic clinicians; experts in public health surveillance and cybersecurity who understand TIPS challenges related to the research, and who can involve typically hard-to-reach groups who may or may not be in clinical care, ensuring wide engagement and subsequent impact. As such, the work plan is fundamentally co-created. Multiple perspectives are synthesised through research-through-design activities; design prototypes become a basis for exploring opportunities to understand, and innovate. Our aspiration is to deliver foundational understanding of TIPs concerns for stigmatised populations, and to enable the trusted sharing of data through the inclusive design and evaluation of new systems and services. This work will inform ethical frameworks and responsible digital innovation strategies for healthcare provision to enable all citizens to live and age well in society.