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1.
JMIR Res Protoc ; 13: e52281, 2024 Jun 13.
Artigo em Inglês | MEDLINE | ID: mdl-38869930

RESUMO

BACKGROUND: While the advantages of using the internet and social media for research recruitment are well documented, the evolving online environment also enhances motivations for misrepresentation to receive incentives or to "troll" research studies. Such fraudulent assaults can compromise data integrity, with substantial losses in project time; money; and especially for vulnerable populations, research trust. With the rapid advent of new technology and ever-evolving social media platforms, it has become easier for misrepresentation to occur within online data collection. This perpetuation can occur by bots or individuals with malintent, but careful planning can help aid in filtering out fraudulent data. OBJECTIVE: Using an example with urban American Indian and Alaska Native young women, this paper aims to describe PRIOR (Protocol for Increasing Data Integrity in Online Research), which is a 2-step integration protocol for combating fraudulent participation in online survey research. METHODS: From February 2019 to August 2020, we recruited participants for formative research preparatory to an online randomized control trial of a preconceptual health program. First, we described our initial protocol for preventing fraudulent participation, which proved to be unsuccessful. Then, we described modifications we made in May 2020 to improve the protocol performance and the creation of PRIOR. Changes included transferring data collection platforms, collecting embedded geospatial variables, enabling timing features within the screening survey, creating URL links for each method or platform of data collection, and manually confirming potentially eligible participants' identifying information. RESULTS: Before the implementation of PRIOR, the project experienced substantial fraudulent attempts at study enrollment, with less than 1% (n=6) of 1300 screened participants being identified as truly eligible. With the modified protocol, of the 461 individuals who completed a screening survey, 381 did not meet the eligibility criteria assessed on the survey. Of the 80 that did, 25 (31%) were identified as ineligible via PRIOR. A total of 55 (69%) were identified as eligible and verified in the protocol and were enrolled in the formative study. CONCLUSIONS: Fraudulent surveys compromise study integrity, validity of the data, and trust among participant populations. They also deplete scarce research resources including respondent compensation and personnel time. Our approach of PRIOR to prevent online misrepresentation in data was successful. This paper reviews key elements regarding fraudulent data participation in online research and demonstrates why enhanced protocols to prevent fraudulent data collection are crucial for building trust with vulnerable populations. TRIAL REGISTRATION: ClinicalTrials.gov NCT04376346; https://www.clinicaltrials.gov/study/NCT04376346. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/52281.


Assuntos
Nativos do Alasca , Humanos , Feminino , População Urbana , Fraude/prevenção & controle , Internet , Indígenas Norte-Americanos , Adolescente , Adulto Jovem , Indígena Americano ou Nativo do Alasca
2.
PLoS One ; 19(1): e0296244, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38194421

RESUMO

BACKGROUND: Postpartum women with overweight/obesity and a history of adverse pregnancy outcomes are at elevated risk for cardiometabolic disease. Postpartum weight loss and lifestyle changes can decrease these risks, yet traditional face-to-face interventions often fail. We adapted the Diabetes Prevention Program into a theory-based mobile health (mHealth) program called Fit After Baby (FAB) and tested FAB in a randomized controlled trial. METHODS: The FAB program provided 12 weeks of daily evidence-based content, facilitated tracking of weight, diet, and activity, and included weekly coaching and gamification with points and rewards. We randomized women at 6 weeks postpartum 2:1 to FAB or to the publicly available Text4baby (T4B) app (active control). We measured weight and administered behavioral questionnaires at 6 weeks, and 6 and 12 months postpartum, and collected app user data. RESULTS: 81 eligible women participated (77% White, 2% Asian, 15% Black, with 23% Hispanic), mean baseline BMI 32±5 kg/m2 and age 31±5 years. FAB participants logged into the app a median of 51/84 (IQR 25,71) days, wore activity trackers 66/84 (IQR 43,84) days, logged weight 17 times (IQR 11,24), and did coach check-ins 5.5/12 (IQR 4,9) weeks. The COVID-19 pandemic interrupted data collection for the primary 12-month endpoint, and impacted diet, physical activity, and body weight for many participants. At 12 months postpartum women in the FAB group lost 2.8 kg [95% CI -4.2,-1.4] from baseline compared to a loss of 1.8 kg [95% CI -3.8,+0.3] in the T4B group (p = 0.42 for the difference between groups). In 60 women who reached 12 months postpartum before the onset of the COVID-19 pandemic, women randomized to FAB lost 4.3 kg [95% CI -6.0,-2.6] compared to loss in the control group of 1.3 kg [95% CI -3.7,+1.1] (p = 0.0451 for the difference between groups). CONCLUSIONS: There were no significant differences between groups for postpartum weight loss for the entire study population. Among those unaffected by the COVID pandemic, women randomized to the FAB program lost significantly more weight than those randomized to the T4B program. The mHealth FAB program demonstrated a substantial level of engagement. Given the scalability and potential public health impact of the FAB program, the efficacy for decreasing cardiometabolic risk by increasing postpartum weight loss should be tested in a larger trial.


Assuntos
COVID-19 , Doenças Cardiovasculares , Lactente , Gravidez , Humanos , Feminino , Adulto , Pandemias , Estilo de Vida , COVID-19/epidemiologia , COVID-19/prevenção & controle , Redução de Peso
3.
AIDS Care ; 36(3): 296-301, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-37345710

RESUMO

Fifty-one 18-22-year-old Ugandans took part in asynchronous online discussions about sexual decision-making. To increase generalizability and variability of experience, youth were recruited across the country using social media advertising. Participants were stratified into 8 groups by sex and sexual experience (e.g., women who had not had sex). Participants were asked questions such as, "What role do you think [men/women] play in deciding when a couple is going to play sex?" Several themes emerged. Both young men and women articulated social pressures to be abstinent, particularly to avoid STIs and pregnancy moreso than saving oneself for marriage. That said, women noted pressures to be seen as "pure". There also were pressures to have sex: Men were expected to have sex to demonstrate their virility. Women were expected to have sex if they accepted gifts or other commodities from their partners. It seemed that the specter of HIV and other STIs, as well as unwanted pregnancy, served to mitigate these expectations however, resulting in self-efficacy to use condoms among both men and women. Nonetheless, both men and women acknowledged that it could be hard for women to negotiate condoms. Implications for HIV prevention are discussed.


Assuntos
População da África Oriental , Infecções por HIV , Infecções Sexualmente Transmissíveis , Masculino , Gravidez , Adolescente , Humanos , Feminino , Adulto Jovem , Infecções por HIV/prevenção & controle , Uganda , Comportamento Sexual , Infecções Sexualmente Transmissíveis/prevenção & controle , Preservativos , Tomada de Decisões , Parceiros Sexuais
5.
J Ethn Subst Abuse ; : 1-17, 2023 Jun 29.
Artigo em Inglês | MEDLINE | ID: mdl-37382542

RESUMO

Native WYSE CHOICES adapted an Alcohol Exposed Pregnancy (AEP) prevention curriculum for mobile health delivery for young urban American Indian and Alaska Native (AIAN) women. This qualitative study explored the relevance of culture in adapting a health intervention with a national sample of urban AIAN youth. In total, the team conducted 29 interviews across three iterative rounds. Participants expressed interest in receiving culturally informed health interventions, were open to cultural elements from other AIAN tribes, and highlighted the importance of culture in their lives. The study underscores why community voices are central in tailoring health interventions for this population.

6.
Contemp Clin Trials ; 128: 107167, 2023 05.
Artigo em Inglês | MEDLINE | ID: mdl-37001855

RESUMO

BACKGROUND: Fetal Alcohol Spectrum Disorders (FASD) result in lifelong disability and are a leading cause of preventable birth defects in the US, including for American Indian and Alaska Natives (AIANs). Prevention of alcohol exposed pregnancies (AEPs), which can cause FASD, is typically aimed at adult women who are risky drinkers and have unprotected sex. Among AIANs, AEP prevention research has been primarily conducted in reservation communities, even though over 70% of AIANs live in urban areas. Culturally appropriate AEP prevention for urban AIAN young women, regardless of current drinking or sexual behaviors, may maximize the potential for primary prevention at the beginning of the reproductive years for this underserved population. METHODS: We developed a virtual randomized controlled trial (RCT) - fully implemented through technology - to evaluate Native WYSE CHOICES, a culturally tailored mobile app, with urban AIAN young women ages 16-20 nationally. While virtual RCTs are not new, this is the first engaging a solely urban AIAN population, historically excluded from research. Participants are recruited on a rolling basis through the project social media community, organizational partnerships, and in-person events. Eligible participants complete a baseline survey and are randomized to either the app's intervention or comparison arm - each of which provide about 3 h of content. Follow-up data are collected at 1-, 6-, and 12-months post-baseline. RESULTS: Our study offers a template for building trust and extending reach to this underserved population while also providing important lessons and insights on advances in virtual or hybrid research approaches.


Assuntos
Indígena Americano ou Nativo do Alasca , Transtornos do Espectro Alcoólico Fetal , Aplicativos Móveis , Adolescente , Adulto , Feminino , Humanos , Gravidez , Adulto Jovem , Transtornos do Espectro Alcoólico Fetal/prevenção & controle , Ensaios Clínicos Controlados Aleatórios como Assunto
7.
Am Heart J ; 261: 104-108, 2023 07.
Artigo em Inglês | MEDLINE | ID: mdl-36966921

RESUMO

We conducted a multi-center pragmatic trial of a low-risk intervention focused on medication adherence using an opt-out consent approach, where patients could opt out by letter and then electronically. We focus on the cohort after opt-out by mail. Here, we describe that 8% of patients opted out electronically, resulting in a 92% participation rate. Patients who self-identify as Black or Hispanic were less likely to opt out in the study, and half the study cohort was female. This demographic data is useful for planning future trials employing this approach.


Assuntos
Consentimento Livre e Esclarecido , Projetos de Pesquisa , Humanos , Feminino
8.
Digit Health ; 9: 20552076231155679, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36896332

RESUMO

Objective: Our goal is to establish the feasibility of using an artificially intelligent chatbot in diverse healthcare settings to promote COVID-19 vaccination. Methods: We designed an artificially intelligent chatbot deployed via short message services and web-based platforms. Guided by communication theories, we developed persuasive messages to respond to users' COVID-19-related questions and encourage vaccination. We implemented the system in healthcare settings in the U.S. between April 2021 and March 2022 and logged the number of users, topics discussed, and information on system accuracy in matching responses to user intents. We regularly reviewed queries and reclassified responses to better match responses to query intents as COVID-19 events evolved. Results: A total of 2479 users engaged with the system, exchanging 3994 COVID-19 relevant messages. The most popular queries to the system were about boosters and where to get a vaccine. The system's accuracy rate in matching responses to user queries ranged from 54% to 91.1%. Accuracy lagged when new information related to COVID emerged, such as that related to the Delta variant. Accuracy increased when we added new content to the system. Conclusions: It is feasible and potentially valuable to create chatbot systems using AI to facilitate access to current, accurate, complete, and persuasive information on infectious diseases. Such a system can be adapted to use with patients and populations needing detailed information and motivation to act in support of their health.

9.
Mhealth ; 9: 4, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36760785

RESUMO

Background: Mobile applications (apps) exist to promote early child development; however, few studies have examined use of these apps among low-income families. Our objectives were to measure engagement with the Engage, Develop, Learn (EDL) app and determine if it promoted engagement and behavior change among low-income caregivers. Methods: We conducted a pilot study among English and Spanish-speaking, low-income families with children ages 12 to 15 months who received either the EDL app or injury prevention text messages. Baseline data were collected and interventions delivered over two home visits. App engagement was measured using messages opened. Caregiver development-promoting behaviors were measured with STIMQ score changes from baseline to follow-up at child age 2 years. We conducted key informant interviews among families randomized to receive the EDL app to identify barriers and facilitators to app use. Results: A total of 100 caregivers were recruited at their children's preventive care visit with 50 randomized to receive the EDL app and 50 to receive the injury prevention text messages; however, only 25 in the development app and 34 in the injury prevention group completed both home visits. Follow-up data were collected from 14 in the development app group and 30 in the injury prevention group. Over 10 weeks, 24% (6/25) remained engaged with the development app. STIMQ scores did not differ between groups. Barriers included technical difficulties accessing the app, social stressors, and 'forgetting' to use it. Conclusions: Our pilot randomized trial of a child development app suggests that it may not be effective for promoting behavior change among low-income caregivers due to low engagement. Trial Registration: This pilot trial was registered with ClinicalTrials.gov (ID NCT02717390).

10.
J Cancer Educ ; 38(1): 333-343, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-34993900

RESUMO

Adolescence is a critical period for reducing skin cancer risks, yet the development of effective interventions for middle and high school youth has lagged behind those for younger children. We developed and implemented the "Youth Engaged Strategies for Changing Adolescent Norms!" (YESCAN!) program, a school-based peer leader program that uses a youth-researcher partnership approach and a project-based curriculum to support high school students in developing and delivering short narrative videos and related material about skin cancer prevention to middle school students. Participating middle and high school students completed pre- and post-program surveys assessing skin cancer attitudes, perceived norms, and behavioral intentions. Middle school students (N = 97) reported positive pre- to post-program changes in future intentions to engage in sun protection and reduce UV exposure behaviors and on numerous measures of normative beliefs and attitudes. High school students (N = 13) reported positive changes on a smaller set of behavioral intentions, normative beliefs, and attitudes. These findings add to a growing body of support for youth-participatory, peer-led approaches to adolescent risk reduction in general and to skin cancer risks specifically. The YESCAN! program fills a need for effective skin cancer prevention among adolescents, while at the same time addressing educational objectives to develop 21st Century Skills.


Assuntos
Comportamento do Adolescente , Neoplasias Cutâneas , Criança , Humanos , Adolescente , Neoplasias Cutâneas/prevenção & controle , Instituições Acadêmicas , Grupo Associado , Currículo , Inquéritos e Questionários , Conhecimentos, Atitudes e Prática em Saúde
11.
JMIR Aging ; 5(4): e35592, 2022 Oct 06.
Artigo em Inglês | MEDLINE | ID: mdl-36201402

RESUMO

BACKGROUND: Heart failure is a leading cause of death among older adults. Digital health can increase access to and awareness of palliative care for patients with advanced heart failure and their caregivers. However, few palliative care digital interventions target heart failure or patients' caregivers, family, and friends, termed here as the social convoy. To address this need, the Social Convoy Palliative Care (Convoy-Pal) mobile intervention was developed to deliver self-management tools and palliative care resources to older adults with advanced heart failure and their social convoys. OBJECTIVE: The goal of the research was to test the acceptability and usability of Convoy-Pal among older adults with advanced heart failure and their social convoys. METHODS: Convoy-Pal includes tablet-based and smartwatch tools facilitating self-management and access to palliative care resources. Older adults and social convoy caregivers completed an acceptability and usability interview via Zoom, including open-ended questions and the Mobile Application Rating Scale: User Version (uMARS). Descriptive analysis was conducted to summarize the results of open-ended feedback and self-reported acceptability and usability. RESULTS: A total of 26 participants (16 older adults and 10 social convoy caregivers) participated in the interview. Overall, the feedback from users was good (uMARS mean 3.96/5 [SD 0.81]). Both older adults and social convoy caregivers scored information provided by Convoy-Pal the highest (mean 4.22 [SD 0.75] and mean 4.21 [SD 0.64], respectively). Aesthetics, functionality, and engagement were also perceived as acceptable (mean >3.5). Open-ended feedback resulted in 5 themes including improvements to goal setting, monitoring tools, daily check-in call feature, portal and mobile app, and convoy assessment. CONCLUSIONS: Convoy-Pal was perceived as acceptable with good usability among older adults with heart failure and their social convoy caregivers. With good acceptability, Convoy-Pal may ultimately lead to increased access to palliative care resources and facilitate self-management among older adults with heart failure and their social convoy caregivers.

12.
BMC Pregnancy Childbirth ; 22(1): 660, 2022 Aug 24.
Artigo em Inglês | MEDLINE | ID: mdl-36002798

RESUMO

BACKGROUND: New mothers experience BF challenges but have limited evidence-based technology-enabled support. OBJECTIVES: 1) Determine if using the Mother's Milk Messaging™ app improved aspects of breastfeeding and breastfeeding rates and 2) Describe engagement as well as themes from the qualitative feedback on the app. METHOD: Randomized Controlled Trial National sample of primiparous, singleton mothers recruited online and then randomized using stratification by language into three arms: 1) BF text messages plus app; 2) BF text messages, app and physician-moderated private Facebook (FB) group; 3) Attention control group who received injury prevention texts. Exclusive breastfeeding rates as primary outcome and knowledge/attitude, confidence, and social support as secondary outcomes. We determined engagement through analysis of app usage metrics. We conducted and content-coded interviews with participants to learn more about app usage and BF experience. Due to the nature of the intervention participants could not be blinded. RESULTS: There were a total of 346 participants in the trial, with 227 in the Intervention (n = 154 group 1 and n = 156 group 2) and 119 in the control group. Because of minimal Facebook activity, the two intervention groups 1 and 2 were combined. There were no differences in breastfeeding exclusivity and duration. (NS). Women in the intervention arm reported significantly higher confidence with breastfeeding and perceived social support to the control group (p < .05). Greater than 80% registered the app and those that engaged with the app had higher scores with time. Mothers appreciated receiving text messages and videos with reliable information. No harm was reported in this study. CONCLUSION: MMM increased confidence with breastfeeding and with gathering social supports. Exclusively BF was high in all participants. Mothers perceived it as useful and dependable especially the texting.


Assuntos
Aplicativos Móveis , Envio de Mensagens de Texto , Aleitamento Materno , Feminino , Humanos , Leite Humano , Mães
13.
Health Commun ; 37(12): 1476-1487, 2022 11.
Artigo em Inglês | MEDLINE | ID: mdl-35775369

RESUMO

To inform health communication campaigns for COVID-19 prevention and vaccine promotion among racial and ethnic minorities facing disparities, we conducted formative research by interviewing Hispanic/Latino American (Latino), Black/African American (AA), and American Indian/Alaska Native (AI/AN) participants to explore their challenges during the pandemic, the barriers and facilitators to receiving COVID-19 vaccines, acceptability of using chatbots to deliver COVID-19 and vaccine information, and preferred features and suggestions for culturally tailored prevention messages. Positive perceptions of the COVID-19 vaccine were mainly derived from beliefs that the vaccine can protect oneself and families from getting infected and help stop the pandemic. Negative perceptions of the COVID-19 vaccine were driven by concerns about vaccine safety due to the rapid development process and side effects. Latino participants would like to know more information about the vaccine and evidence of its effectiveness. AA participants identified seeing others, especially government officials, get the vaccine first as a facilitator and low trust in the government and healthcare system as barriers to getting the COVID-19 vaccine. AI/AN participants emphasized the importance of equitable access to the vaccine. Participants preferred messages with the following features: informative and evidence-based messages about COVID-19 and vaccination, encouraging and motivational messages that focused on the hope to end the pandemic and return to normal, prosocial messages, and clear instructions for COVID-19 prevention strategies. Participants also suggested that messages should include different cultural practices, be translated into their native languages, and emphasize care for family members.


Assuntos
Vacinas contra COVID-19 , COVID-19 , COVID-19/epidemiologia , COVID-19/prevenção & controle , Minorias Étnicas e Raciais , Humanos , Pandemias , Estados Unidos/epidemiologia , Vacinação
14.
JMIR Form Res ; 6(4): e34827, 2022 Apr 12.
Artigo em Inglês | MEDLINE | ID: mdl-35412460

RESUMO

BACKGROUND: Management of chronic recurrent medical conditions (CRMCs), such as migraine headaches, chronic pain, and anxiety/depression, remains a major challenge for modern providers. Our team has developed an edge-based, semiautomated mobile health (mHealth) technology called iMTracker that employs the N-of-1 trial approach to allow self-management of CRMCs. OBJECTIVE: This study examines the patterns of adoption, identifies CRMCs that users selected for self-application, and explores barriers to use of the iMTracker app. METHODS: This is a feasibility pilot study with internet-based recruitment that ran from May 15, 2019, to December 23, 2020. We recruited 180 patients to pilot test the iMTracker app for user-selected CRMCs for a 3-month period. Patients were administered surveys before and after the study. RESULTS: We found reasonable usage rates: a total of 73/103 (70.9%) patients who were not lost to follow-up reported the full 3-month use of the app. Most users chose to use the iMTracker app to self-manage chronic pain (other than headaches; 80/212, 37.7%), followed by headaches in 36/212 (17.0%) and mental health (anxiety and depression) in 27/212 (12.8%). The recurrence rate of CRMCs was at least weekly in over 93% (169/180) of patients, with 36.1% (65/180) of CRMCs recurring multiple times in a day, 41.7% (75/180) daily, and 16.1% (29/180) weekly. We found that the main barriers to use were the design and technical function of the app, but that use of the app resulted in an improvement in confidence in the efficiency and safety/privacy of this approach. CONCLUSIONS: The iMTracker app provides a feasible platform for the N-of-1 trial approach to self-management of CRMCs, although internet-based recruitment provided limited follow-up, suggesting that in-person evaluation may be needed. The rate of CRMC recurrence was high enough to allow the N-of-1 trial assessment for most traits.

15.
JMIR Form Res ; 6(2): e32138, 2022 Feb 25.
Artigo em Inglês | MEDLINE | ID: mdl-35212633

RESUMO

BACKGROUND: Many American Indian and Alaska Native (AI/AN or Native) communities express concern about high rates of suicide and poor mental health. Technology-based health interventions that nurture resilience, coping skills, connectedness, and help-seeking skills may be an effective strategy for promoting health and wellbeing among AI/AN youth. The Northwest Portland Area Indian Health Board designed the BRAVE intervention for AI/AN youth. BRAVE is delivered via SMS text messaging and includes role model videos, mental wellness strategies, links to culturally relevant resources, and social support from family and friends. OBJECTIVE: The aim of this study is to explore system data from the BRAVE intervention to determine patterns of user engagement and differences in psychosocial outcomes based on the number of clicks on BRAVE content. METHODS: The BRAVE study included 1030 AI/AN teens and young adults nationwide (15 to 24 years old). The message series in the BRAVE and STEM study arms included 3 to 5 SMS text messages per week, featuring 1 role model video and 1 image per week. Messages were sent out via Mobile Commons (Upland Software Inc), a mobile messaging provider that supports text, picture, and video SMS. RESULTS: Of the 509 participants in the original BRAVE analysis, 270 had sufficient data to analyze user engagement, with at least 1 trackable click on a study SMS text message. Of the 270, 184 (68.1%) were female, 50 (18.5%) were male, and 36 (13.3%) selected another gender category. The average participant was 20.6 years old, with a minimum and maximum age of 15 and 26 years. Most participants had relatively low engagement measured by the number of clicks (median 2; mean 3.4), although others clicked message content as many as 49 times. Users engaged most frequently with the YouTube-based content (viewing 1 of 7 role model videos), with 64.8% (175/270) of total clicks coming from the role model videos, and earlier episodes receiving the highest number of clicks. Most baseline psychosocial measures were not significantly associated with the number of links clicked. However, help-seeking behavior was highly significant (P<.001), with a rate ratio of 0.82 (0.73, 0.92), indicating that each 1-unit increase in help-seeking score at baseline was associated with an 18% decrease in the expected number of study content clicks. CONCLUSIONS: This is the first study to set initial standards for assessing user engagement in an mHealth intervention. Our work underscores the feasibility of exploring the impact of engagement on intended outcomes, allowing for more precise exploration of the dose-response relationship that may be realized through these low-touch interventions that offer promising potential for reaching high numbers of program participants. TRIAL REGISTRATION: ClinicalTrials.gov NCT04979481; https://clinicaltrials.gov/ct2/show/NCT04979481.

16.
JMIR Form Res ; 6(1): e32273, 2022 Jan 13.
Artigo em Inglês | MEDLINE | ID: mdl-35023840

RESUMO

BACKGROUND: Vaccine-preventable infections result in significant morbidity, mortality, and costs in pediatric transplant recipients. However, at the time of transplant, less than 20% of children are up-to-date for age-appropriate immunizations that could prevent these diseases. Smartphone apps have the potential to increase immunization rates through their ability to provide vaccine education, send vaccine reminders, and facilitate communication between parents and a multidisciplinary medical group. OBJECTIVE: The aim of this study was to describe the development of a smartphone app, Immunize PediatricTransplant, to promote pretransplant immunization and to report on app functionality and usability when applied to the target population. METHODS: We used a mixed methods study design guided by the Mobile Health Agile Development and Evaluation Lifecycle. We first completed a formative research including semistructured interviews with transplant stakeholders (12 primary care physicians, 40 parents or guardians of transplant recipients, 11 transplant nurse coordinators, and 19 transplant subspecialists) to explore the acceptability of an immunization app to be used in the pretransplant period. Based on these findings, CANImmunize Inc developed the Immunize PediatricTransplant app. We next held 2 focus group discussions with 5-6 transplant stakeholders/group (n=11; 5 parents of transplant recipients, 2 primary care physicians, 2 transplant nurse coordinators, and 2 transplant subspecialists) to receive feedback on the app. After the app modifications were made, alpha testing was conducted on the functional prototype. We then implemented beta testing with 12 stakeholders (6 parents of transplant recipients, 2 primary care doctors, 2 transplant nurse coordinators, and 2 transplant subspecialists) to refine the app through an iterative process. Finally, the stakeholders completed the user version of the Mobile Application Rating Scale (uMARS) to assess the functionality and quality of the app. RESULTS: A new Android- and Apple-compatible app, Immunize PediatricTransplant, was developed to improve immunization delivery in the pretransplant period. The app contains information about vaccine use in the pretransplant period, houses a complete immunization record for each child, includes a communication tool for parents and care providers, and sends automated reminders to parents and care providers when immunizations are due. During usability testing, the stakeholders were able to enter a mock vaccine record containing 16 vaccines in an average of 8.1 minutes (SD 1.8) with 87% accuracy. The stakeholders rated engagement, functionality, aesthetics, and information quality of the app as 4.2/5, 4.5/5, 4.6/5, and 4.8/5, respectively. All participants reported that they would recommend this app to families and care teams with a child awaiting solid organ transplant. CONCLUSIONS: Through a systematic, user-centered, agile, iterative approach, the Immunize PediatricTransplant app was developed to improve immunization delivery in the pretransplant period. The app tested well with end users. Further testing and agile development among patients awaiting transplant are needed to understand real-world acceptability and effectiveness in improving immunization rates in children awaiting transplant.

17.
Mhealth ; 7: 57, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34805388

RESUMO

BACKGROUND: Academic-industry collaborations (AICs) are endorsed to alleviate challenges in digital health, but partnership experiences remain understudied. The qualitative study's objective investigated collaboration experiences between academic institutions and digital health companies. METHODS: A phenomenology methodology captured experiences of AICs, eliciting perspectives from academic researchers and industry affiliates (e.g., leadership, company investigators). Semi-structured interviews probed eligible collaborators about their experiences in digital health. Analysts coded and organized data into significant statements reaching thematic saturation. RESULTS: Participants (N=20) were interviewed from 6 academic institutions and 14 unique industry partners. Seven themes emerged: (I) Collaboration evolves with time, relationships, funding, and evidence; (II) Collaboration demands strong relationships and interpersonal dynamics; (III) Operational processes vary across collaborations; (IV) Collaboration climate and context matters; (V) Shared expectations lead to a better understanding of success; (VI) Overcoming challenges with recommendations; (VII) Collaboration may help navigate the global pandemic. CONCLUSIONS: Digital health academic industry collaboration demands strong relationships, requiring flexible mechanisms of collaboration and cultural fit. Diverse models of collaboration exist and remain dependent on contextual factors. While no collaboration conquers all challenges in digital health, AICs may serve as a facilitator for improved digital health products, thus advancing science, promoting public health, and benefiting the economy.

18.
Front Digit Health ; 3: 616278, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34713094

RESUMO

Digital health remains a growing and challenging niche in public health practice. Academic-industry collaboration (AIC) offers a mechanism to bring disparate sectors together to alleviate digital health challenges of engagement, reach, sustainability, dissemination, evaluation, and equity. Despite the ongoing endorsements for AIC in digital health, limited understanding exists of successful AIC exists. Most published research highlights the barriers of collaboration rather than efficacy, leaving collaborators asking: What are the benefits and facilitators of AIC and do they apply in digital health? As an initial effort to fill the gap in the literature, the purpose of this mini review outlines the benefits and facilitators from previous AIC and offers recommendations specific to digital health.

19.
J Med Internet Res ; 23(9): e28797, 2021 09 16.
Artigo em Inglês | MEDLINE | ID: mdl-34528888

RESUMO

BACKGROUND: Although patient portals are widely used for health promotion, little is known about the use of palliative care and end-of-life (PCEOL) portal tools available for patients and caregivers. OBJECTIVE: This study aims to identify and assess the user perspectives of PCEOL portal tools available to patients and caregivers described and evaluated in the literature. METHODS: We performed a scoping review of the academic literature directed by the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-analyses) extension for Scoping Review and searched three databases. Sources were included if they reported the development or testing of a feature, resource, tool, or intervention; focused on at least one PCEOL domain defined by the National Coalition for Hospice and Palliative Care; targeted adults with serious illness or caregivers; and were offered via a patient portal tethered to an electronic medical record. We independently screened the titles and abstracts (n=796) for eligibility. Full-text (84/796, 10.6%) sources were reviewed. We abstracted descriptions of the portal tool name, content, targeted population, and reported user acceptability for each tool from included sources (n=19). RESULTS: In total, 19 articles describing 12 tools were included, addressing the following PCEOL domains: ethical or legal (n=5), physical (n=5), and psychological or psychiatric (n=2). No tools for bereavement or hospice care were identified. Studies have reported high acceptability of tools among users; however, few sources commented on usability among older adults. CONCLUSIONS: PCEOL patient portal tools are understudied. As medical care increasingly moves toward virtual platforms, future research should investigate the usability and acceptability of PCEOL patient portal resources and evaluate their impact on health outcomes.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Portais do Paciente , Assistência Terminal , Idoso , Cuidadores , Humanos , Cuidados Paliativos
20.
JMIR Ment Health ; 8(9): e26158, 2021 Sep 15.
Artigo em Inglês | MEDLINE | ID: mdl-34524092

RESUMO

BACKGROUND: Culturally relevant interventions are needed to help American Indian and Alaska Native (AI/AN) teenagers and young adults navigate common risky situations involving family and friends, including drug and alcohol misuse, dating violence, and suicidality. Leveraging We R Native, a multimedia health resource for Native teenagers and young adults, staff of the Northwest Portland Area Indian Health Board designed the BRAVE intervention for Native youth. The program is delivered via SMS text messaging and includes role model videos, mental wellness strategies, links to culturally relevant resources, and social support from family and friends. OBJECTIVE: We aim to conduct a randomized controlled trial of the BRAVE intervention among AI/AN teenagers and young adults (aged 15-24 years) to assess its impact on their physical, mental, and spiritual health; their resilience and self-esteem; and their coping and help-seeking skills. METHODS: From October to December 2019, we recruited 2334 AI/AN teenagers and young adults nationwide via social media channels and SMS text messages and enrolled 1044 participants. AI/AN teenagers and young adults enrolled in the study received either BRAVE SMS text messages, designed to improve mental health, help-seeking skills, and cultural resilience, or 8 weeks of science, technology, engineering, and math (STEM) SMS text messages, designed to elevate and reaffirm Native voices in STEM and medicine and then received the BRAVE SMS text messages. The impacts of the BRAVE intervention were tested using linear mixed-effect models and linear regressions. RESULTS: A total of 833 AI/AN teenagers and young adults were included in the analysis. Individuals in the BRAVE and STEM arms showed significant positive trends over the course of the study for all outcomes, except cultural identity and help-seeking behavior. Mean scores were significantly different for health (P<.001), resilience (P<.001), negative coping (P=.03), positive coping (P<.001), self-efficacy (P=.02), and self-esteem (P<.001). Changes in help-seeking self-efficacy were significant in those exhibiting risky behaviors at baseline to exit (P=.01). Those who reported positive coping scores at baseline also reported better health on average; however, no difference was found in risky drug and alcohol use (P<.001). The number of participants who used SMS text messages to help themselves increased from 69.1% (427/618) at 3 months to 76% (381/501; P<.001) at 8 months. Similarly, the number of participants who used SMS text messages to help friends or family members increased from 22.4% (138/616) at 3 months to 54.6% (272/498) at 8 months. CONCLUSIONS: This is the first national randomized controlled trial of a mobile health intervention among AI/AN teenagers and young adults to test the efficacy of a mental wellness intervention in relation to STEM career messages. This study provides new insights for supporting the next generation of AI/AN changemakers. TRIAL REGISTRATION: ClinicalTrials.gov NCT04979481; https://clinicaltrials.gov/ct2/show/NCT04979481.

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