Designing for Reflection on Shared HIV Health Information

People living with chronic conditions are increasingly turning to digital technologies to track their health, coupled with reaching out to their peers to make sense of fluctuations in their health. However, there is a lack of appropriate technologies to support reflecting on shared personal health information. This paper reports on a study investigating how technology could be designed to support people living with HIV in reflecting on shared personal health information. Participants used two design provocations to reflect on changes in their health. Results showed that the design provocations encouraged reflection, with higher levels of reflection appearing to require greater use of peer information. We contribute a new understanding of how reflection on shared health information takes place and consider the next generation of digital technologies for people living with HIV

"It feels like I'm managing myself": HIV+ people tracking their personal health information

Nearly 37 million people live with HIV globally and recent advances in medicine have transformed HIV to a chronic disease, if managed. Previous research in Personal Health Informatics has investigated how people self-manage other chronic conditions, such as diabetes, by tracking and reflecting on their health information but there is little knowledge of how people do so for complex and socially stigmatized diseases like HIV. A better understanding of their specialized needs could lead to the development of more appropriate tools to self-manage their condition. Our paper introduces an iterative process model of Personal Health Informatics. We then describe the results of an empirical study involving HIV+ adults aimed at understanding their issues, concerns and actions in each of the stages of this process model. We provide implications for the design of personal informatics tools and open research directions that can lead to better self-management for people living with HIV

The use of online forums by people living with HIV for help in understanding personal health information

Purpose: Effective self-management of the human immunodeficiency virus/acquired immune deficiency virus (HIV/AIDS) requires constant vigilance over personal health information. Little is known about the contribution of online communities to this endeavour. This paper reports a study to investigate how people living with HIV/AIDS use an online community to try to understand their personal health information by analysing how health information is shared and asked about, and how the community responds to questions. Methods: A webscraper was used to gather all messages in the 200 most recently active threads in an online forum for people living with HIV/AIDS, resulting in a total of 2455 messages. These were filtered for all instances of individuals sharing their personal health information and asking the community for help in understanding it. Thematic analysis was used to determine the types of questions asked, the personal health information shared and the information that was asked about. Messages from the community aiming to address the questions were analysed using a framework of social support. Results: Approximately 10% of the 2455 messages were found to be involved in this activity: 60 messages contained questions, and 192 messages responded to address the questions. The most frequent type of question was about causation. While users shared a wide variety of information about their health, they most commonly asked about reactions, lab results, and other conditions. Nearly all the messages from the community that aimed to answer the questions provided informational support, which is a type of social support, and the community shared their own personal experiences in these responses. Conclusions: This study demonstrates that online forums are used by people living with HIV to ask specific questions as a means of understanding their personal health information. The analysis provides a better understanding of the questions that people living with HIV have about their health information, and the types of support they receive from the community. The results provide a basis for further research into community support and self-management and will enable improved tools to support self-management

Reflection and personal health informatics for people living with HIV

Recent advances in medicine mean that millions of people who are living with the Human Immunodeficiency Virus (HIV) can expect to live normal life spans. However, HIV, the medication prescribed to control the virus, and living with a stigmatized disease, are each associated with a wide array of negative impacts on the body and mind, and these present a challenge in an individual’s ability to self-manage their health information. A key aspect of self-management is self-understanding, and Personal Health Informatics (PHI) has the potential to help those living with HIV in understanding their health through reflection. However, there is little indication of the needs of people living with HIV and how PHI systems can best support them in reflecting on their health information. In order to fill this gap, this thesis aims to answer the overall research question: How can Personal Health Informatics systems support people living with HIV in reflecting on their personal health information? Answering this research question was approached in four parts: • The development of a synthesized model of the process of PHI, as means of understanding the context of PHI. • Interviews with HIV+ individuals were conducted to understand where there were opportunities for supporting reflection. • An analysis of an online forum was conducted to determine what people living with HIV were trying to reflect upon, what health information was being asked about, and how the community attempts to support them in reflecting on their health. • Two visual prototypes were designed to simulate community-aided reflection and support people living with HIV in reflecting on their personal health information. These were used during a user study to understand how reflection occurred. My research is the first to explore how to support HIV+ people in reflecting on their personal health information. The main contribution of this research is a detailed understanding of how PHI systems can support people living with HIV in reflecting on their health information. This main contribution is comprised of four smaller ones: • A six-stage process model of Personal Health Informatics • A detailed understanding of how people living with HIV currently track and reflect on their personal health information, and design implications for PHI systems to support them in reflection • An empirical understanding of community-aided reflection as it occurs in an online forum, alongside the identification of five common questions that people living with HIV seek help in online forums for reflecting upon, the information asked about, and how the community attempts to address the questions • A detailed depiction of how reflection occurs when using a prototype designed to simulate community-aided reflectio

Are HIV smartphone apps and online interventions fit for purpose?

Sexual health is an under-explored area of Human-Computer Interaction (HCI), particularly sexually transmitted infections such as HIV. Due to the stigma associated with these infections, people are often motivated to seek information online. With the rise of smartphone and web apps, there is enormous potential for technology to provide easily accessible information and resources. However, using online information raises important concerns about the trustworthiness of these resources and whether they are fit for purpose. We conducted a review of smartphone and web apps to investigate the landscape of currently available online apps and whether they meet the diverse needs of people seeking information on HIV online. Our functionality review revealed that existing technology interventions have a one-size-fits-all approach and do not support the breadth and complexity of HIV-related support needs. We argue that technology-based interventions need to signpost their offering and provide tailored support for different stages of HIV, including prevention, testing, diagnosis and management

Mass of the b-quark and B-decay constants from Nf=2+1+1 twisted-mass Lattice QCD

We present precise lattice computations for the b-quark mass, the quark mass ratios mb/mc and mb/ms as well as the leptonic B-decay constants. We employ gauge configurations with four dynamical quark flavors, up/down, strange and charm, at three values of the lattice spacing (a ~ 0.06 - 0.09 fm) and for pion masses as low as 210 MeV. Interpolation in the heavy quark mass to the bottom quark point is performed using ratios of physical quantities computed at nearby quark masses exploiting the fact that these ratios are exactly known in the static quark mass limit. Our results are also extrapolated to the physical pion mass and to the continuum limit and read: mb(MSbar, mb) = 4.26(10) GeV, mb/mc = 4.42(8), mb/ms = 51.4(1.4), fBs = 229(5) MeV, fB = 193(6) MeV, fBs/fB = 1.184(25) and (fBs/fB)/(fK/fpi) = 0.997(17).Comment: Version to appear in PRD. Added comments to simulation setup and error budget discussion. 1+20 pages, 9 figure

Role and Efficacy of Intraoperative Evaluation of Resection Adequacy in Conservative Breast Surgery

In the present study we considered the histology of 51 patients who have undergone breast conservative surgery and the related 54 re-excisions that were performed in the same surgical procedure or in delayed procedures, in order to evaluate the role of intraoperative re-excisions in completing tumor removal. In 13% of the cases the re excision obtained the resection of the target lesion. In this study, the occurrence of residual neoplastic lesions in intraoperative re-excisions (24%) is lower than in delayed re-excisions (62%; P = .03). The residual lesions that we could find with definitive histology of re excision specimens are related with lesions with ill defined profile. In 77% of the cases of re excision with tumoral residual the lesion was close to the new resection margin, thus the re-excisions couldn't achieve an adequate ablation of the neoplasm. Invasive or preinvasive nature of the main lesion resected for each case and the approach to the evaluation of the first resection specimen adequacy (surgical or radiological) don't affect the rate of tumoral residual in intraoperative re-excisions. In conclusion, our data are consistent with a low efficacy of intraoperative re excision in obtaining a complete removal of the tumor; intraoperative radiologic evaluation of the first resection specimen is however imperative in defining the effective removal of the target lesion

Trust, Identity, Privacy, and Security Considerations For Designing a Peer Data Sharing Platform Between People Living With HIV

Resulting from treatment advances, the Human Immunodeficiency Virus(HIV) is now a long-term condition, and digital solutions are being developed to support people living with HIV in self-management. Sharing their health data with their peers may support self-management, but the trust, identity, privacy and security (TIPS) considerations of people living with HIV remain underexplored. Working with a peer researcher who is expert in the lived experience of HIV, we interviewed 26 people living with HIV in the United Kingdom (UK) to investigate how to design a peer data sharing platform. We also conducted rating activities with participants to capture their atitudes towards sharing personal data. Our mixed methods study showed that participants were highly sophisticated in their understanding of trust and in their requirements for robust privacy and security. Tey indicated willingness to share digital identity atributes, including gender, age, medical history, health and well-being data, but not details that could reveal their personal identity. Participants called for TIPS measures to foster and to sustain responsible data sharing within their community. Tese findings can inform the development of trustworthy and secure digital platforms that enable people living with HIV to share data with their peers and provide insights for researchers who wish to facilitate data sharing in other communities with stigmatised health conditions