Bringing an end to diabetes stigma and discrimination: an international consensus statement on evidence and recommendations.

People with diabetes often encounter stigma (ie, negative social judgments, stereotypes, prejudice), which can adversely affect emotional, mental, and physical health; self-care, access to optimal health care; and social and professional opportunities. To accelerate an end to diabetes stigma and discrimination, an international multidisciplinary expert panel (n=51 members, from 18 countries) conducted rapid reviews and participated in a three-round Delphi survey process. We achieved consensus on 25 statements of evidence and 24 statements of recommendations. The consensus is that diabetes stigma is driven primarily by blame, perceptions of burden or sickness, invisibility, and fear or disgust. On average, four in five adults with diabetes experience diabetes stigma and one in five experience discrimination (ie, unfair and prejudicial treatment) due to diabetes, such as in health care, education, and employment. Diabetes stigma and discrimination are harmful, unacceptable, unethical, and counterproductive. Collective leadership is needed to proactively challenge, and bring an end to, diabetes stigma and discrimination. Consequently, we achieved unanimous consensus on a pledge to end diabetes stigma and discrimination.

Dichotomising the risk of hyperglycaemia into diabetes and prediabetes may render a disservice to patient care.

Cardiovascular diseases (CVDs) are the leading cause of death worldwide, accounting for one-third of global mortality. Prediabetes increases the risk of CVDs as well as several other conditions, yet people with prediabetes may not seek intervention, thinking that they do not have diabetes, as the risk of progression may have not been emphasised by the healthcare professional. Accumulating evidence indicates that hyperglycaemia represents a continuum of CVD risk and dichotomising the risk into type 2 diabetes and prediabetes may deter early clinical intervention. It is proffered that the term 'prediabetes' is a misnomer that may disguise a serious condition, fostering complacency and undermining its prognostic significance.

A WHO key informant language survey of people with lived experiences of diabetes: Media misconceptions, values-based messaging, stigma, framings and communications considerations.

AIMS: This study aimed to learn from people with lived experiences of diabetes to raise the quality of diabetes communications. METHODS: An online key informant survey for people (18+) with a direct and/or adjacent (caregiver, friend, family-member etc.,) lived experience of diabetes. Through thematic analysis, we gathered insights on perceptions of media reporting on diabetes and communicating with accuracy, impact and without stigma. Descriptive analysis also investigated effective values for WHO to communicate diabetes with key audiences of policy-makers, funding partners and the general public. RESULTS: 918 respondents in 58 WHO Member States were analysed. Participants identified five key themes requiring more appropriate consideration in the media: accurately defining diabetes types, over-emphasis on sugar and lifestyle, negative impacts of diabetes stigma, burden of costs (financial, personal and interpersonal) and mental health. Irrespective of audience, key values-based messages identified as important for WHO to convey included: 'urgency', 'preventing suffering', 'improving wellbeing' and 'meaningful engagement' of people with lived experience. CONCLUSION: Learning from people with lived experience of diabetes identifies key diabetes communication considerations. Continued meaningful engagement of this group, including in WHO's work and the multistakeholder diffusion of this methodology to local contexts, could improve public discourse on diabetes and related policies.

'We're all on the same team'. Perspectives on the future of artificial pancreas systems by adults in Australia with type 1 diabetes using open-source technologies: A qualitative study.

AIMS: An emerging group of people with type 1 diabetes are not waiting for commercial solutions, choosing to manage their condition with open-source artificial pancreas systems (APS). Our aim was to explore their perspectives on the future of APS. METHODS: Semi-structured telephone interviews were conducted (in Australia, October 2018 to January 2019) with 23 adults with type 1 diabetes currently using open-source APS. Interviews were recorded, transcribed and analysed thematically. RESULTS: Participants described five key features of open-source APS they value: compatibility, user-led design, customisability, ability to evolve faster and community-driven. They attributed the success of the open-source APS movement to benefits they derive from these features: choice, solutions that meet their needs, ownership, staying one step ahead and real-time support. They expressed hope that future commercial products and healthcare would benefit from their learnings and from collaboration with the open-source APS community. CONCLUSIONS: Participants believed that there will always be a place for the open-source community. It will continue to build on and advance commercial products, respond to user needs, offering a higher degree of control and customisation than afforded by commercial products and generating optimism for the future. Participants desired that future commercial diabetes technologies would be inspired by the open-source community and developed collaboratively with people with diabetes.

Methods to Generate Innovative Research Ideas and Improve Patient and Public Involvement in Modern Epidemiological Research: Review, Patient Viewpoint, and Guidelines for Implementation of a Digital Cohort Study.

BACKGROUND: Patient and public involvement (PPI) in research aims to increase the quality and relevance of research by incorporating the perspective of those ultimately affected by the research. Despite these potential benefits, PPI is rarely included in epidemiology protocols. OBJECTIVE: The aim of this study is to provide an overview of methods used for PPI and offer practical recommendations for its efficient implementation in epidemiological research. METHODS: We conducted a review on PPI methods. We mirrored it with a patient advocate's viewpoint about PPI. We then identified key steps to optimize PPI in epidemiological research based on our review and the viewpoint of the patient advocate, taking into account the identification of barriers to, and facilitators of, PPI. From these, we provided practical recommendations to launch a patient-centered cohort study. We used the implementation of a new digital cohort study as an exemplary use case. RESULTS: We analyzed data from 97 studies, of which 58 (60%) were performed in the United Kingdom. The most common methods were workshops (47/97, 48%); surveys (33/97, 34%); meetings, events, or conferences (28/97, 29%); focus groups (25/97, 26%); interviews (23/97, 24%); consensus techniques (8/97, 8%); James Lind Alliance consensus technique (7/97, 7%); social media analysis (6/97, 6%); and experience-based co-design (3/97, 3%). The viewpoint of a patient advocate showed a strong interest in participating in research. The most usual PPI modalities were research ideas (60/97, 62%), co-design (42/97, 43%), defining priorities (31/97, 32%), and participation in data analysis (25/97, 26%). We identified 9 general recommendations and 32 key PPI-related steps that can serve as guidelines to increase the relevance of epidemiological studies. CONCLUSIONS: PPI is a project within a project that contributes to improving knowledge and increasing the relevance of research. PPI methods are mainly used for idea generation. On the basis of our review and case study, we recommend that PPI be included at an early stage and throughout the research cycle and that methods be combined for generation of new ideas. For e-cohorts, the use of digital tools is essential to scale up PPI. We encourage investigators to rely on our practical recommendations to extend PPI in future epidemiological studies.

How Adults with Type 1 Diabetes Are Navigating the Challenges of Open-Source Artificial Pancreas Systems: A Qualitative Study.

Objective: An emerging group of people with type 1 diabetes are building and using their own artificial pancreas systems (APS). Currently, these "user-led," open-source systems are not endorsed by regulatory bodies. People face multiple challenges when building and using open-source APS (e.g., lacking required technical knowledge, difficulties sourcing hardware). We explored the experiences of adults with type 1 diabetes using open-source APS to understand how they are navigating these challenges. Research Design and Methods: We conducted semistructured telephone interviews (October 2018 to January 2019) with Australian adults about their experiences using an open-source APS. Interviews were recorded, transcribed, and analyzed thematically. Results: Participants included 23 adults with type 1 diabetes, aged 25-64 years, 10 (43%) women, with 1-34 months of experience of open-source APS. Participants used four key strategies to navigate challenges: (1) peer support, (2) self-sufficiency, (3) risk management, and (4) trade-offs. Participants relied on peer support and self-sufficiency to fill perceived gaps in professional and industry support. They felt that using an open-source solution was no riskier than previous management and demonstrated a conscious weighing-up of risks. Overall, participants felt that the experienced benefits for their physical health and quality of life outweighed the challenges and potential risks. Conclusions: Adults with type 1 diabetes are applying several interweaving psychosocial and practical strategies to navigate the challenges of building and using open-source APS. The findings highlight the importance of health professionals' showing support and understanding for those choosing to use an open-source APS.

Women with type 1 diabetes and women with type 2 diabetes differ in knowledge and beliefs about contraception and pregnancy.

AIMS: To assess differences in knowledge and beliefs about pregnancy in women with diabetes. METHODS: Questions were from the Australian 'Contraception, Pregnancy & Women's Health' survey. Women (18-50 years) were eligible if pregnant or planning pregnancy. Knowledge and beliefs items were adapted from the Reproductive Health and Behaviours Questionnaire. RESULTS: Compared to women with type 2 diabetes (n = 103), women with type 1 diabetes (n = 526) had higher scores for knowledge about pregnancy in diabetes (type 1 diabetes 9.8 ± 2.4 vs. type 2 diabetes 7.7 ± 3.1), beliefs about benefits (type 1 diabetes 18.4 ± 2.2 vs. type 2 diabetes 17.2 ± 3.3), cues-to-action (type 1 diabetes 2.7 ± 1.4 vs. type 2 diabetes 1.5 ± 1.3) and self-efficacy (type 1 diabetes 22.6 ± 5.5 vs. type 2 diabetes 20.2 ± 6.1 (all p < 0.001) regarding preparing for pregnancy. Major knowledge gaps were the need for higher dose folate compared to women without diabetes and uncertainty about breastfeeding recommendations. Women with type 1 diabetes believed more strongly in the benefits of 'close to target' glucose levels prior to pregnancy and using contraception to prevent unplanned pregnancy; they also felt more confident to access pre-pregnancy care and to wait for optimal glycaemia before pregnancy. Women with type 2 diabetes were less aware of contraceptive choices, and risks associated with hyperglycaemia before or early in pregnancy. CONCLUSIONS: The findings highlighted main gaps in knowledge and beliefs about planning for pregnancy. Especially in type 2 diabetes, there is a need for evidence-based messaging and strategies addressing these gaps, to raise understanding to prepare for future pregnancies.

The COVID19 pandemic - Perspectives from people living with diabetes.

During the unprecedented times of the COVID 19 pandemic, the lives of people with diabetes have been severely impacted. This article discusses the extent of this impact presenting the obstacles and challenges from the perspective of the patient, including specifics of practical day-to-day diabetes self-management routines. Since the COVID19 outbreak, certain psychosocial factors have been amplifieddue tothe manner in whichmainstream media and policy makers have carelessly emphasized the vulnerability of people with diabetes. The authors discuss the increased importance of support networksdue to people living in isolation and quarantine. Anewlayer of complexity has been added to the already difficult task of managing one's diabetes and ithasincreasedanxiety and stress levels. Guidelines and tips for people living with diabetes are discussed based on theauthors' personalexperiences as well as those ofthe diabetes associations they work with.

Development of the Intercultural Diabetes Online Community Research Council: Codesign and Social Media Processes.

BACKGROUND: This case study describes the formation of the Intercultural Diabetes Online Community Research council (iDOCr) and community advisory board (CAB) to engage the diabetes community and researchers in the codesign of community-based participatory research (CBPR) to examine online peer support in type 2 diabetes (T2D). METHOD: Social media engagement was the foundation for CBPR knowledge generation. During the project, the iDOCr council and CAB (n = 27) met quarterly via video conferencing and three times in person during national diabetes meetings. Data from four Twitter chats were used to explore the usefulness and utility of Twitter data to learn about concerns and priorities of the diabetes online community (DOC) and supported the evolution of iDOCr, the development of a research question and the design of a CBPR study. RESULTS: The iDOCr project (1) created a diverse CAB; (2) raised awareness of iDOCr and online peer support, which resulted in support and trust from key opinion leaders within the DOC to enable future partnerships for research and funding; (3) engaged with English- and Spanish-speaking DOC users through social media; and (4) designed a CBPR study supported by Twitter chat data analyses. CONCLUSIONS: Integrating the voice of people with diabetes (PWD) and the DOC in designing CBPR, through use of a CAB, ensures the most important and relevant research questions are asked. Additional research focused on online peer support may increase health care provider confidence in referring PWD to this low-cost and relatively accessible resource with the potential power to advance health.

Factors associated with attendance for pre-pregnancy care and reasons for non-attendance among women with diabetes.

AIMS: To describe factors associated with the uptake of diabetes-specific pre-pregnancy care (PPC), determine the perceived helpfulness of attending, reasons for non-attendance and intention to seek PPC in the future. METHODS: A cross-sectional 66-item survey was administered to Australian women with type 1 or type 2 diabetes mellitus (DM) aged 18-50 years. RESULTS: Of 429 eligible women, 54% reported having attended PPC. In multivariable logistic regression analysis, having Type 1 DM [adjusted OR 1.89, 95% CI (1.07, 3.33)], being married or in a defacto relationship [OR 2.43 (95% CI 1.27, 4.65)], tertiary educated [OR 1.91 (95% CI 1.27, 2.88)] or employed [OR 1.80 (95% CI 1.14, 2.82)] were associated with being more likely to attend PPC. Sixty eight percent (68%) rated attending PPC as helpful. A lack of awareness about the availability of PPC (48%) and unplanned pregnancy (47%) were the main reasons for non-attendance. Of women with future pregnancy plans, 43% were aware of local services offering PPC and 84% indicated they would attend PPC if available. CONCLUSION: Australian women who attend PPC differ by type of diabetes and socioeconomic characteristics. Initiatives are needed to address this disparity and encourage all women with diabetes to plan and prepare for pregnancy. Reasons reported for non-attendance suggest that strategies to increase awareness about the availability of diabetes-specific PPC and the risks of unplanned pregnancy are warranted.