Perspectives of healthcare professionals and people living with HIV in dialogue: on information sharing to improve communication at the consultation.

We report on a qualitative Group Survey study involving four healthcare professionals (HCPs) and eight people living with HIV who were recipients of care in the United Kingdom (UK). The survey aimed to bring participants' perspectives into dialogue and establish consensus about how communication between HCPs delivering HIV care and their patients could be improved in the context of the routine care consultation. Responses from both parties were anonymously collated, thematically analysed, and shared back with participants in two subsequent survey rounds to support consensus-building on matters of concern and identify thematic insights. In this paper, we report three themes for informing future designs of tools and services to support communication between patients and HCPs: Patient-clinician relationship for trusted sharing; Self-reporting psychosocial information to support Whole-person care; and Perceived barriers for online trusted sharing with HCPs. Our findings highlight key areas of concern and further investigation is needed to understand how self-reported information may be meaningfully captured, interpreted and processed by HCPs in ways that are trusted by patients who voice privacy and security concerns.

'Chugging along, plugging in and out of it': Understanding a place-based approach for community-based support of mental health recovery.

Community-based Mental Health (MH) organisations in the United Kingdom (UK) are facing challenges for sustaining in-person service delivery. Without empirical evidence that demonstrates the value of a place-based approach for MH recovery, and the types of resources needed to build nurturing spaces for peer support, community-based MH organisations will struggle to maintain their physical spaces. We present empirical insights from a case study involving interviews with 20 students accessing peer support services at the Recovery College Collective, a community-based MH organisation located in the North East of England. The interview study aims to evidence how a place-based approach can afford MH recovery. We draw from discourses on place-making and interpret our interview findings through an established framework that highlights four mechanisms through which place impacts recovery: place for doing, being, becoming and belonging. We use this framework to structure our findings and highlight key qualities of place for establishing and maintaining MH recovery. Our contribution is two-fold: we address a gap in the literature by providing empirical understandings of how place influences MH recovery, whilst extending previous research by considering the role that place plays in community-based organisations. This is timely because of the challenges faced in securing in-person service delivery post-pandemic, and a shift towards remote service provision models. We highlight key implications: (i) Accessing a physical place dedicated to MH support is vital for people who do not have anywhere else to go and are socially isolated due to their health conditions; (ii) Connecting through peer-to-peer interaction is an integral part of the recovery process, and learning from people with lived experience can inform a place-based approach that best suit their needs; and (iii) Recognising the value of place for MH support, and the resources needed for peer support delivery in the community, will help secure places that our research participants described as lifesaving.

People with long-term conditions sharing personal health data via digital health technologies: A scoping review to inform design.

The use of digital technology amongst people living with a range of long-term health conditions to support self-management has increased dramatically. More recently, digital health technologies to share and exchange personal health data with others have been investigated. Sharing personal health data with others is not without its risks: sharing data creates threats to the privacy and security of personal data and plays a role in trust, adoption and continued use of digital health technology. Our work aims to inform the design of these digital health technologies by investigating the reported intentions of sharing health data with others, the associated user experiences when using these digital health technologies and the trust, identity, privacy and security (TIPS) considerations for designing digital health technologies that support the trusted sharing of personal health data to support the self-management of long-term health conditions. To address these aims, we conducted a scoping review, analysing over 12,000 papers in the area of digital health technologies. We conducted a reflexive thematic analysis of 17 papers that described digital health technologies that support sharing of personal health data, and extracted design implications that could enhance the future development of trusted, private and secure digital health technologies.

Collecting and sharing self-generated health and lifestyle data: Understanding barriers for people living with long-term health conditions - a survey study.

Background: The growing popularity of collecting self-generated health and lifestyle data presents a valuable opportunity to develop our understanding of long-term health conditions and improve care. Barriers remain to the effective sharing of health and lifestyle data by those living with long-term health conditions which include beliefs around concepts of Trust, Identity, Privacy and Security, experiences of stigma, perceptions of risk and information sensitivity. Method: We surveyed 250 UK adults who reported living with a range of long-term health conditions. We recorded data to assess self-reported behaviours, experiences, attitudes and motivations relevant to sharing self-generated health and lifestyle data. We also asked participants about their beliefs about Trust, Identity, Privacy and Security, stigma, and perceptions of risk and information sensitivity regarding their health and lifestyle data. Results: Three-quarters of our sample reported recording information about their health and lifestyle on a daily basis. However, two-thirds reported never or rarely sharing this information with others. Trust, Identity, Privacy and Security concerns were considered to be 'very important' by those with long-term health conditions when deciding whether or not to share self-generated health and lifestyle data with others, with security concerns considered most important. Of those living with a long-term health condition, 58% reported experiencing stigma associated with their condition. The greatest perceived risk from sharing with others was the potential for future harm to their social relationships. Conclusions: Our findings suggest that, in order for health professionals and researchers to benefit from the increased prevalence of self-generated health and lifestyle data, more can be done to address security concerns and to understand perceived risks associated with data sharing. Digital platforms aimed at facilitating the sharing of self-generated health and lifestyle data may look to highlight security features, enable users to control the sharing of certain information types, and emphasise the practical benefits to users of sharing health and lifestyle data with others.

Understanding the Barriers and Facilitators to Sharing Patient-Generated Health Data Using Digital Technology for People Living With Long-Term Health Conditions: A Narrative Review.

Using digital technology to share patient-generated health data has the potential to improve the self-management of multiple long-term health conditions. Sharing these data can allow patients to receive additional support from healthcare professionals and peer communities, as well as enhance their understanding of their own health. A deeper understanding of the concerns raised by those living with long-term health conditions when considering whether to share health data via digital technology may help to facilitate effective data sharing practices in the future. The aim of this review is to identify whether trust, identity, privacy and security concerns present barriers to the successful sharing of patient-generated data using digital technology by those living with long-term health conditions. We also address the impact of stigma on concerns surrounding sharing health data with others. Searches of CINAHL, PsychInfo and Web of Knowledge were conducted in December 2019 and again in October 2020 producing 2,581 results. An iterative review process resulted in a final dataset of 23 peer-reviewed articles. A thorough analysis of the selected articles found that issues surrounding trust, identity, privacy and security clearly present barriers to the sharing of patient-generated data across multiple sharing contexts. The presence of enacted stigma also acts as a barrier to sharing across multiple settings. We found that the majority of literature focuses on clinical settings with relatively little attention being given to sharing with third parties. Finally, we suggest the need for more solution-based research to overcome the discussed barriers to sharing.