Exploring the Multidimensionality of Trust in Participatory Health Partnerships - A Network Approach.

Introduction: Previous studies have identified "trust" as a key mechanism to achieve sustainable partnerships in participatory health research, which themselves can represent social networks. A recent review discussed the potential for social network analysis to investigate the development and maintenance of trust and its effects on partnership functioning in participatory health research partnerships. This review also recommended considering a comprehensive, nuanced and multidimensional approach to conceptualizing, operationalizing and measuring trust in research partnerships. Thus, this study aims to explore empirically the conceptualizing, operationalizing and measuring of trust in a multidimensional manner, approaching each trust dimension as an individual trust network, as well as combined as an overall trust network. Methods: We sampled the whole network, recruiting from a newly established network of 57 individuals that must collaborate to achieve a common goal. These individuals represented academic, service and community organizations of an existing participatory partnership, the Public and Patient Involvement Ignite Network in Ireland. Of the 57 individuals invited to take part in the study, 75% (n = 43) individuals completed the network survey. A survey about trust was designed based on literature in the area and was administered via Qualtrics. The survey included eight network questions: one on collaboration, and seven on specific dimensions of trust. From this, we constructed a network for each trust dimension. We compared several core network measures of each to identify structural differences between the dimensions of trust. To statistically validate them, we compared them to a random and preferential null model. Results: All the networks had a high reciprocity but were decentralized. Key differences were identified across trust dimensions, particularly in terms of integrity and shared values, visions and goals. None of the networks compared well to the null models indicating participants did not randomly or preferentially (based on how much trust they receive for a particular trust dimension) trust other partners. Discussion/Conclusion: This novel empirical social network analysis of trust in a real-world partnership elucidates the nuances and multidimensional nature of trust. This provides support for expanding this research direction to enhance understanding of and interventions for trust in participatory health research.

Identifying the gaps in Irish cancer care: Patient, public and providers' perspectives.

BACKGROUND: The University of Limerick Cancer network (ULCaN) was established in 2019 with funding from the Health Research Institute at the University of Limerick in order to build a network between individuals in academia, primary and secondary care and the general public so that cancer services can be coordinated and more effective. The aim of this paper is to outline our experience of engaging with stakeholders to identify gaps in the cancer journey locally. METHODS: Four focus group discussions were conducted with patients; their carers; members of the public; and healthcare providers with 2 main aims: 1) to investigate gaps in cancer services; 2) to identify knowledge, attitudes and opportunities available to promote cancer research. The focus groups were audio recorded, transcribed and thematically analysed. RESULTS: 15 themes within the topics of cancer care, palliation, communication, clinical trials, diet and exercise and public and patient involvement in research and advocacy were identified. These include directing people to reliable information and navigating misinformation and stigma linked with cancer, promoting awareness of clinical trials and palliative care services and improving communication when multiple healthcare providers are involved. CONCLUSION: The need to make more coherent, efficient and integrated cancer research amongst local stakeholders was evident. Embedding patients and members of the public into ULCaN is an important deliverable for collaborative research.

Tweet for Behavior Change: Using Social Media for the Dissemination of Public Health Messages.

BACKGROUND: Social media public health campaigns have the advantage of tailored messaging at low cost and large reach, but little is known about what would determine their feasibility as tools for inducing attitude and behavior change. OBJECTIVE: The aim of this study was to test the feasibility of designing, implementing, and evaluating a social media-enabled intervention for skin cancer prevention. METHODS: A quasi-experimental feasibility study used social media (Twitter) to disseminate different message "frames" related to care in the sun and cancer prevention. Phase 1 utilized the Northern Ireland cancer charity's Twitter platform (May 1 to July 14, 2015). Following a 2-week "washout" period, Phase 2 commenced (August 1 to September 30, 2015) using a bespoke Twitter platform. Phase 2 also included a Thunderclap, whereby users allowed their social media accounts to automatically post a bespoke message on their behalf. Message frames were categorized into 5 broad categories: humor, shock or disgust, informative, personal stories, and opportunistic. Seed users with a notable following were contacted to be "influencers" in retweeting campaign content. A pre- and postintervention Web-based survey recorded skin cancer prevention knowledge and attitudes in Northern Ireland (population 1.8 million). RESULTS: There were a total of 417,678 tweet impressions, 11,213 engagements, and 1211 retweets related to our campaign. Shocking messages generated the greatest impressions (shock, n=2369; informative, n=2258; humorous, n=1458; story, n=1680), whereas humorous messages generated greater engagement (humorous, n=148; shock, n=147; story, n=117; informative, n=100) and greater engagement rates compared with story tweets. Informative messages, resulted in the greatest number of shares (informative, n=17; humorous, n=10; shock, n=9; story, n=7). The study findings included improved knowledge of skin cancer severity in a pre- and postintervention Web-based survey, with greater awareness that skin cancer is the most common form of cancer (preintervention: 28.4% [95/335] vs postintervention: 39.3% [168/428] answered "True") and that melanoma is most serious (49.1% [165/336] vs 55.5% [238/429]). The results also show improved attitudes toward ultraviolet (UV) exposure and skin cancer with a reduction in agreement that respondents "like to tan" (60.5% [202/334] vs 55.6% [238/428]). CONCLUSIONS: Social media-disseminated public health messages reached more than 23% of the Northern Ireland population. A Web-based survey suggested that the campaign might have contributed to improved knowledge and attitudes toward skin cancer among the target population. Findings suggested that shocking and humorous messages generated greatest impressions and engagement, but information-based messages were likely to be shared most. The extent of behavioral change as a result of the campaign remains to be explored, however, the change of attitudes and knowledge is promising. Social media is an inexpensive, effective method for delivering public health messages. However, existing and traditional process evaluation methods may not be suitable for social media.