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Background/Aims: Despite the investments being made to develop biobanks, African Americans are under-represented in genomic studies. We identified factors having significant independent associations with intentions to donate personal health information and blood and/or tissue samples to a biobank in a national random sample of African Americans (n = 1,033). Methods: We conducted a national survey from October 2010 through February 2011. Results: Twenty-three percent of respondents reported that it was not at all likely that they would donate to a biobank, 18% reported it was a little likely, 36% reported it was somewhat likely, and 23% reported it was very likely. Respondents who were likely to donate to a biobank had greater positive expectations about participating in cancer genetics research and reported more participation facilitators relative to barriers. Respondents who were distrustful of researchers had a significantly lower likelihood of being willing to donate to a biobank compared to those who were less distrustful. Conclusions: African Americans have diverse attitudes about participating in genetics research, and many are likely to donate to a biobank based on expectations of positive outcomes. It may be important to address attitudes about genetics research as part of recruitment to enhance the quality of informed consent for participation in biobanks among African Americans.

Background The benefits of involving those with lived experience in the design and development of health technology are well recognized, and the reporting of co-design best practices has increased over the past decade. However, it is important to recognize that the methods and protocols behind patient and public involvement and co-design vary depending on the patient population accessed. This is especially important when considering individuals living with cognitive impairments, such as dementia, who are likely to have needs and experiences unique to their cognitive capabilities. We worked alongside individuals living with dementia and their care partners to co-design a mobile health app. This app aimed to address a gap in our knowledge of how cognition fluctuates over short, microlongitudinal timescales. The app requires users to interact with built-in memory tests multiple times per day, meaning that co-designing a platform that is easy to use, accessible, and appealing is particularly important. Here, we discuss our use of Agile methodology to enable those living with dementia and their care partners to be actively involved in the co-design of a mobile health app. Objective The aim of this study is to explore the benefits of co-design in the development of smartphone apps. Here, we share our co-design methodology and reflections on how this benefited the completed product. Methods Our app was developed using Agile methodology, which allowed for patient and care partner input to be incorporated iteratively throughout the design and development process. Our co-design approach comprised 3 core elements, aligned with the values of patient co-design and adapted to meaningfully involve those living with cognitive impairments: end-user representation at research and software development meetings via a patient proxy; equal decision-making power for all stakeholders based on their expertise; and continuous user consultation, user-testing, and feedback. Results This co-design approach resulted in multiple patient and care partner–led software alterations, which, without consultation, would not have been anticipated by the research team. This included 13 software design alterations, renaming of the product, and removal of a cognitive test deemed to be too challenging for the target demographic. Conclusions We found patient and care partner input to be critical throughout the development process for early identification of design and usability issues and for identifying solutions not previously considered by our research team. As issues addressed in early co-design workshops did not reoccur subsequently, we believe this process made our product more user-friendly and acceptable, and we will formally test this assumption through future pilot-testing.

Background Peripheral immune markers have previously been linked to a poor response to antipsychotic medication and more severe negative symptoms at the onset of psychosis. The present study investigated the association of blood cytokines and complement markers with the presence of antipsychotic non-response and symptom severity in patients with psychosis. Methods This cross-sectional study recruited 94 patients with schizophrenia and other psychoses, of whom 47 were defined as antipsychotic responders and 47 as antipsychotic non-responders. In all subjects we measured plasma levels of cytokines (IL-1β, IL-2, IL-4, IL-6, IL-8, IL-10, IL-12p70, IL-13, TNF-α, and IFN-γ), complement markers (C1-inhibitor, C3, C4, C3a, C3b, Bb, factor D, C5a, terminal complement complex) and high sensitivity C-reactive protein (hsCRP). Symptom severity was recorded using the Positive and Negative Syndrome scale for Schizophrenia (PANSS). Binary logistic regression tested each immune marker as predictor of response status while covarying for relevant socio-demographic variables. Correlation analyses tested the association between immune markers and the severity of symptoms. Results Interleukin (IL)-8 significantly predicted antipsychotic non-response (OR=24.70, 95% CI, 1.35–453.23, p = 0.03). Other immune markers were not associated with antipsychotic response. IL-6, IL-8, IL-10 and TNF-α significantly positively correlated with negative psychotic symptoms. Conclusions Higher levels of IL-8 are associated with a poor response to antipsychotic treatment. Increased cytokines levels are specifically associated with more severe negative symptoms in patients with schizophrenia and other psychoses.

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