Not “just a bad period”— The impact of a co-created endometriosis social media health campaign: a mixed methods study

Objective: The goal of this study was to evaluate the impact of a visual social media health campaign. The #1in10 campaign was co-created by the Danish Endometriosis Patient Association and women with endometriosis. Methods: Seven semi-structured interviews were conducted with campaign participants to evaluate their experience of participating. The interviews were then analyzed thematically. Social media metrics on the reach of the campaign were gathered to assess how the campaign had performed. Results: Seven themes were identified in the interviews: (1) Taboo, (2) Visibility, (3) Awareness, (4) Acknowledgment, (5) Empowerment, (6) Patient Experts, and (7) Community. Throughout the interviews, the women conveyed that they found their participation in the campaign meaningful, as it contributed to creating awareness and recognition of a disease otherwise surrounded by taboo and stigma. Social media metrics show how the #1in10 campaign reached both people inside and outside the endometriosis community. Across the FEMaLe Project's three social media platforms, 208 (51.5%) of engagements were with patients with endometriosis, 96 (23.7%) were with FEMaLe employees and advisers, 94 (23.3%) were with the general public, and 6 (1.5%) were with policymakers. In the month the #1in10 campaign was released, the FEMaLe Project's Twitter and Instagram accounts had more impressions than almost any other month that year (except January on Twitter and November on Instagram). The FEMaLe Project's LinkedIn had the same number of impressions as in other months. Discussion: The study shows that the #1in10 social media campaign had an impact on three levels: on an individual level for the participating patients, on a communal level for people with endometriosis, and on a wider societal level. The participating patients felt empowered by their involvement with the campaign and the act of coming forward. The participants acted on behalf of their community of people with endometriosis, in the hopes that it would raise awareness and acknowledgment. In return, the community engaged with the campaign and added significantly to the dissemination of its message. On a societal level the campaign has caught particular attention and engagement compared to other posts made on the same social media accounts. Combining qualitative and quantitative methods, this study has demonstrated that the #1in10 campaign had an impact on three different levels: individual, communal, and societal. On an individual level the campaign fostered empowerment for the participating women, because they felt that their participation contributed to making their struggles visible, known, and acknowledged. The participants took part in the campaign on behalf of their community of people with endometriosis, in the hopes that their activistic actions would benefit future members of the community. That the campaign resonated with the community is evident by the fact that 51.5% (N = 208) of the engagement with the campaign was made by members of the community. As such, the community was vital for both the creation and the dissemination of the campaign. The #1in10 campaign performed comparatively well with regards to creating engagements on social media- not just within the community but also in the wider society. While this does not necessarily entail a change in attitude or behavior, it suggests that the co-created and visual nature of the campaign had an impact on the audience

SERIES: eHealth in primary care. Part 5: a critical appraisal of five widely used eHealth applications for primary care - opportunities and challenges

Background Given the pressure on modern healthcare systems, eHealth can offer valuable opportunities. However, understanding the potential and challenges of eHealth in daily practice can be challenging for many general practitioners (GPs) and their staff. Objectives To critically appraise five widely used eHealth applications, in relation to safe, evidence-based and high-quality eHealth. Using these applications as examples, we aim to increase understanding of eHealth among GPs and highlight the opportunities and challenges presented by eHealth. Discussion eHealth applications can support patients while increasing efficiency for GPs. A three-way division (inform, monitor, track; interaction; data utilisation) characterises many eHealth applications, with an increasing degree of complexity depending on the domain. All applications provide information and some have extra functionalities that promote interaction, while data analysis and artificial intelligence may be applied to support or (fully) automate care processes. Applications in the inform domain are relatively easy to use and implement but their impact on clinical outcomes may be limited. More demanding applications, in terms of privacy and ethical aspects, are found in the data utilisation domain and may potentially have a more significant impact on care processes and patient outcomes. When selecting and implementing eHealth applications, we recommend that GPs remain critical regarding preconditions on safe, evidence-based and high-quality eHealth, particularly in the case of more complex applications in the data utilisation domain.Prevention, Population and Disease management (PrePoD)Public Health and primary car

A case-only study to identify genetic modifiers of breast cancer risk for BRCA1/BRCA2 mutation carriers

Breast cancer (BC) risk for BRCA1 and BRCA2 mutation carriers varies by genetic and familial factors. About 50 common variants have been shown to modify BC risk for mutation carriers. All but three, were identified in general population studies. Other mutation carrier-specific susceptibility variants may exist but studies of mutation carriers have so far been underpowered. We conduct a novel case-only genome-wide association study comparing genotype frequencies between 60,212 general population BC cases and 13,007 cases with BRCA1 or BRCA2 mutations. We identify robust novel associations for 2 variants with BC for BRCA1 and 3 for BRCA2 mutation carriers, P < 10−8, at 5 loci, which are not associated with risk in the general population. They include rs60882887 at 11p11.2 where MADD, SP11 and EIF1, genes previously implicated in BC biology, are predicted as potential targets. These findings will contribute towards customising BC polygenic risk scores for BRCA1 and BRCA2 mutation carriers

Italian Consensus Statement on Management of HIV-Infected Individuals with Advanced Disease Naïve to Antiretroviral Therapy

Individuals with advanced HIV infection naïve to antiretroviral therapy represent a special population of patients frequently encountered in clinical practice. They are at high risk of disease progression and death, and their viroimmunologic response following the initiation of highly active antiretroviral therapy may be more incomplete or slower than that of other patients. Infection management in such patients can also be complicated by underlying conditions, comorbidities, and the need for concomitant medications