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Journal Description

 

JMIR Research Protocols (ISSN 1929-0748) is a unique Pubmed- and (new!) Scopus-indexed journal, publishing peer-reviewed, openly accessible research ideas and grant proposals, study and trial protocols, reports of ongoing research, current methods and approaches, and preliminary results from pilot studies or formative research informing the design of medical and health-related research and technology innovations.

While the original focus was on eHealth studies, JMIR Res Protoc now publishes protocols and grant proposals in all areas of medicine (and their peer-review reports, if available), as well as feasibility studies, early reports and formative/process evaluations of ongoing studies and descriptions of the development and pilot evaluations of innovations and software applications or other interventions.

JMIR Res Protoc is fully open access, with full-text articles deposited in PubMed Central.

Publishing research protocols, grant proposals, pilot/feasibility studies and early reports of ongoing and planned work encourages collaboration and early feedback, and reduces duplication of effort.

JMIR Res Protoc is compatible with the concept of "Registered Reports" and since May 2018, published protocols receive a Registered Report Identifier (What is a Registered Report Identifier?) and acceptance of the subsequent results paper is "in principle" guaranteed in any JMIR journal and partner journals - see What is a Registered Report?

JMIR Res Protoc will be a valuable ressource for researchers who want to learn about current research methodologies and how to write a winning grant proposal.

JMIR Res Protoc creates an early scientific record for researchers who have developed novel methodologies, software, innovations or elaborate protocols.

JMIR Res Protoc provides a "dry-run" for peer-review of the final results paper, and allows feedback/critique of the methods, often while they still can be fixed.

JMIR Res Protoc faciliates subsequent publication of results demonstrating that the methodology has already been reviewed, and reduces the effort of writing up the results, as the protocol can be easily referenced.

JMIR Res Protoc demonstrates to reviewers of subsequent results papers that authors followed and adhered to carefully developed and described a-priori methods.

Studies whose protocols or grant proposals have been accepted in JMIR Res Protoc are "in principle accepted" for subsequent publication of results in other JMIR journals as long as authors adhere to their original protocol - regardless of study results (even if they are negative), reducing publication bias in medicine.

Authors publishing their protocols in JMIR Res Protoc will receive a 20% discount on the article processing fee if they publish their results in another journal of the JMIR journal family (for example, JMIR for ehealth studies, i-JMR for others).

JMIR Res Protoc is also a unique crowdfunding platform, allowing backers to crowdfund carefully peer-reviewed projects that are not junk-science, and giving researchers additional small funding to conduct and publish their research results. Each article is published with a crowdfunding widget, allowing readers to make nominal donations to the project, which benefit the authors (currently in beta).

Need more reasons? Read the Knowledge Base article on "Why should I publish my protocol/grant proposal"!

 
 

Recent Articles:

  • Source: Flickr; Copyright: Howard Ignatius; URL: https://www.flickr.com/photos/howardignatius/10952969694/; License: Creative Commons Attribution + Noncommercial + NoDerivatives (CC-BY-NC-ND).

    Targeting the Infant Gut Microbiota Through a Perinatal Educational Dietary Intervention: Protocol for a Randomized Controlled Trial

    Abstract:

    Background: The early life gut microbiota are an important regulator of the biological pathways contributing toward the pathogenesis of noncommunicable disease. It is unclear whether improvements to perinatal diet quality could alter the infant gut microbiota. Methods: The Healthy Parents, Healthy Kids randomized controlled trial aimed to recruit 90 pregnant women from Melbourne, VIC. At week 26 of gestation, women were randomized to receive dietary advice from their doctor (n=45), or additionally receive a dietary intervention (n=45). The intervention included an educational workshop and 2 support calls aiming to align participants’ diets with the Australian Dietary Guidelines and increase intakes of prebiotic and probiotic foods. The educational design focused on active learning and self-assessment. Behavior change techniques were used to support dietary adherence, and the target behavior was eating for the gut microbiota. Exclusion criteria were age under 18 years, diagnosed mental illnesses, obesity, diabetes mellitus, diagnosed bowel conditions, exclusion diets, illicit drug use, antibiotic use, prebiotic or probiotic supplementation, and those lacking dietary autonomy. The primary outcome measure is a between-group difference in alpha diversity in infant stool collected 4 weeks after birth. Secondary outcomes include evaluating the efficacy of the intervention in influencing infant and maternal stool microbial composition and short chain fatty acid concentrations, epigenetic profile, and markers of inflammation and stress, as well as changes in maternal dietary intake and well-being. The study and intervention feasibility and acceptance will also be evaluated as secondary outcomes. Results: The study results are yet to be written. The first participant was enrolled on July 28, 2016, and the final follow-up assessment was completed on October 11, 2017. Conclusions: Data from this study will provide new insights regarding the ability of interventions targeting the perinatal diet to alter the maternal and infant gut microbiota. If this intervention is proven, our findings will support larger studies aiming to guide the assembly of gut microbiota in early life.

  • Source: i yunmai / Unsplash; Copyright: i yunmai; URL: https://unsplash.com/photos/5jctAMjz21A; License: Licensed by JMIR.

    Weight Loss After Stroke Through an Intensive Lifestyle Intervention (Group Lifestyle Balance-Cerebrovascular Accident): Protocol for a Randomized Controlled...

    Abstract:

  • Untitled. Source: freepik; Copyright: pressfoto; URL: https://www.freepik.com/free-photo/pregnant-woman-talking-her-doctor-room_861626.htm#page=1&query=pregnant%20woman%20hospital&position=21; License: Licensed by JMIR.

    Health Research Using Facebook to Identify and Recruit Pregnant Women Who Use Electronic Cigarettes: Internet-Based Nonrandomized Pilot Study

    Abstract:

    Background: Participant recruitment is often a challenge, particularly enrolling individuals with relatively rare characteristics. The wide reach of social media may provide a mechanism to overcome these challenges. Objective: This paper aimed to provide information to researchers who seek to recruit participants from rare populations using social media for studies with demanding protocols. We aimed to describe a pilot study protocol that identified and enrolled pregnant women (second or third trimester) who were exclusive users of electronic cigarettes (e-cigarettes). We have described the recruitment methods, time, and cost; examined advertisement types that were more or less successful; discussed participant retention and relationship management; and described the process of collecting biological data. Methods: In an open-access, nonrandomized pilot study, we placed Facebook advertisements that were selectively targeting women who were likely to be pregnant and interested in e-cigarettes or vaping. The advertisements invited individuals to complete a fully automated eligibility screener based on Qualtrics. Eligible participants were asked to (1) complete a Web-based survey that collected detailed information on the use of e-cigarettes, including the exact type of device and electronic liquid, (2) report the frequency and intensity of e-cigarette use for 3 months before pregnancy and during each trimester, and (3) provide a saliva specimen for a nicotine biomarker assay. We collected a photograph of each participant’s e-cigarette device, 8 weeks after the mother’s due date, to allow corroboration of the self-report and the baby’s birth weight and gestational age from the participant’s physician. Results: Participants were recruited between August 19 and October 26, 2017. We enrolled 20 participants in 2 months at a cost of US $3421.28. Baseline data were collected for all 20 participants. Of the 20 women enrolled, 16 provided a saliva sample, 4 provided a photo of the e-cigarette device, and 10 provided physician contact information. Of the 10 physicians contacted by mail, 6 responded with information on the participants and their babies. Conclusions: Study findings suggest that Facebook’s targeting criteria should focus on e-cigarette users to maximize advertisement exposure of potentially eligible women. In addition, saliva sample collection was feasible among pregnant women (second or third trimester) who were exclusive e-cigarette users, but obtaining photographs and physician reports was problematic and called for further refinement. These lessons are likely useful to others who are seeking to use social media to recruit participants from rare populations into studies with demanding protocols.

  • Source: Image created by the Authors; Copyright: The Authors; URL: http://www.researchprotocols.org/2019/10/e14397/; License: Licensed by JMIR.

    Development of a Patient-Reported Outcome Instrument for Patients With Severe Lower Extremity Trauma (LIMB-Q): Protocol for a Multiphase Mixed Methods Study

    Abstract:

    Background: A current limitation in the care of patients with severe lower extremity traumatic injuries is the lack of a rigorously developed patient-reported outcome (PRO) instrument specific to lower extremity trauma patients. Methods: The phase I study follows an interpretive description approach. Development of the PRO instrument begins with identifying the concepts that are important to patients, after which a preliminary conceptual framework is devised from a systematic literature review and used to generate an interview guide. Patients aged 18 years or above with limb-threatening lower extremity traumatic injuries resulting in reconstruction, amputation, or amputation after failed reconstruction will be recruited. The subjects will participate in semistructured, in-depth qualitative interviews to identify all important concepts of interest. The qualitative interview data will be coded with top-level domains, themes, and subthemes. The codes will then be utilized to refine the conceptual framework and generate preliminary items and a set of scales. The preliminary scales will be further refined via a process of conducting cognitive debriefing interviews with lower extremity trauma patients and soliciting expert opinion. Phase III will include a large-scale field test, using Rasch measurement theory to analyze the psychometric properties of the instrument; shortening and finalizing the scales; and determining the reliability, validity, and responsiveness of the instrument. Results: Phases I and II of this study have been funded. Phase I of this study has been completed, and phase II began in winter 2019 and is expected to be completed in fall 2019. Phase III will begin following the completion of phase II. Conclusions: This protocol describes the initial phases of development of a novel PRO instrument for use in lower extremity trauma patients.

  • Source: Unsplash.com; Copyright: Andrew Neel; URL: https://unsplash.com/photos/QLqNalPe0RA; License: Licensed by JMIR.

    Writing a Systematic Review for Publication in a Health-Related Degree Program

    Authors List:

    Abstract:

    Background: The protocol in this manuscript was designed to help graduate students publish, which resulted from a challenge from our provost in 2013. I developed this protocol over the last 6 years and have exercised the protocol for the last 5 years. The current version of the protocol has remained mostly static for the last 2 years—only small changes have been made to the process. Objective: The objective of this protocol is to enable students to learn a valuable skill of conducting a systematic review and to write the review in a way that can be published. I have designed the protocol to fit into the schedule of a traditional semester, but also used it in compressed semesters. Methods: An image map was created in HTML 5.0 and imported into a learning management system. It augments traditional instruction by providing references to published articles, examples, and previously recorded instructional videos. Students use the image map outside the classroom after traditional instruction. The image map helps students create manuscripts that follow established practice and are reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA), and whose authorship follows guidelines by the International Committee of Medical Journal Editors. Results: Since its inception, this protocol has helped 77 students publish 27 systematic reviews in nine journals worldwide. Some manuscripts take multiple years to progress through multiple review processes at multiple journals submitted in sequence. Two other professors in the School of Health Administration have used this protocol in their classes. Conclusions: So far, this method has helped 51% of graduate students who used it in my graduate courses publish articles (with more manuscripts under consideration whose numbers have remained uncounted in this sum). I wish success to others who might use this protocol.

  • Human extended criteria donor kidney allograft. Source: Image created by the Authors; Copyright: The Authors; URL: http://www.researchprotocols.org/2019/10/e14622/; License: Public Domain (CC0).

    Hypothermic Oxygenated Machine Perfusion of Extended Criteria Kidney Allografts from Brain Dead Donors: Protocol for a Prospective Pilot Study

    Abstract:

    Background: Kidney transplantation is the only curative treatment option for end-stage renal disease. The unavailability of adequate organs for transplantation has resulted in a substantial organ shortage. As such, kidney donor allografts that would have previously been deemed unsuitable for transplantation have become an essential organ pool of extended criteria donor allografts that are now routinely being transplanted on a global scale. However, these extended criteria donor allografts are associated with significant graft-related complications. As a result, hypothermic oxygenated machine perfusion (HOPE) has emerged as a powerful, novel technique in organ preservation, and it has recently been tested in preclinical trials in kidney transplantation. In addition, HOPE has already provided promising results in a few clinical series of liver transplantations where the liver was donated after cardiac death. Objective: The present trial is an investigator-initiated prospective pilot study on the effects of HOPE on extended criteria donor allografts donated after brain death and used in kidney transplantation. Methods: A total of 15 kidney allografts with defined inclusion/exclusion criteria will be submitted to two hours of HOPE via the renal artery before implantation, and are going to be compared to a case-matched group of 30 patients (1:2 matching) who had kidneys transplanted after conventional cold storage. Primary (posttransplant dialysis within 7 days) and secondary (postoperative complications, early graft function, duration of hospital and intensive care unit stay, and six-month graft survival) endpoints will be analyzed within a six-month follow-up period. The extent of ischemia-reperfusion injury will be assessed using kidney tissue, perfusate, and serum samples taken during the perioperative phase of kidney transplantation Results: The results of this trial are expected in the first quarter of 2020 and will be presented at national and international scientific meetings and published in international peer-reviewed medical journals. The trial was funded in the third quarter of 2017 and patient enrollment is currently ongoing. Conclusions: This prospective study is designed to explore the effects of HOPE on extended criteria donor kidney allografts donated after brain death. The present report represents the preresults phase. Clinical Trial: Clinicaltrials.gov NCT03378817; https://clinicaltrials.gov/ct2/show/NCT03378817

  • Source: freepik; Copyright: pressfoto; URL: https://www.freepik.com/free-photo/close-up-elderly-woman-with-walking-stick_864487.htm#page=1&query=old%20person%20walker&position=1; License: Licensed by JMIR.

    Effectiveness of a Walking Program Involving the Hybrid Assistive Limb Robotic Exoskeleton Suit for Improving Walking Ability in Stroke Patients: Protocol...

    Abstract:

    Background: Gait disturbance often occurs in stroke survivors. Recovery of walking function is challenging, as some gait disturbance due to hemiparesis often remains even after rehabilitation therapy, presenting a major obstacle towards regaining activities-of-daily-living performance and achieving social reintegration. Objective: This study aims to clarify the effectiveness of a walking program involving the wearable Hybrid Assistive Limb (HAL-TS01) robotic exoskeleton for improving walking ability in stroke patients with hemiparesis and stagnant recovery despite ongoing rehabilitation. Methods: This is a multicenter, randomized, parallel-group, controlled study (HAL group, n=27; control group, n=27). The study period includes preintervention observation (until stagnant recovery), intervention (HAL-based walking therapy or conventional rehabilitation; 5 weeks), and postintervention observation (2 weeks). Following provision of informed consent and primary registration, the patients undergo conventional rehabilitation for preintervention observation, during which the recovery of walking ability is monitored to identify patients with stagnant recovery (based on weekly assessments using the 10-meter maximum walking speed [MWS] test). Patients with an MWS of 30-60 m/minute and insufficient weekly improvement in MWS undergo secondary registration and are randomly assigned to undergo HAL-based walking therapy (HAL group) or conventional rehabilitation (control group). The primary outcome is the change in MWS from baseline to the end of the 5-week intervention. Results: This study began in November 2016 and is being conducted at 15 participating facilities in Japan. Conclusions: Assessments of walking ability vary greatly and it is difficult to define the threshold for significant differences. To reduce such variability, our study involves conducting conventional rehabilitation to the point of saturation before starting the intervention. Stagnation in the recovery of walking ability despite conventional rehabilitation highlights the limits of current medical care. The present study may bring evidence that HAL-based therapy can overcome such limitations and induce added recovery of walking ability, which would promote the use of HAL technology in the clinical setting. Clinical Trial: University Hospital Medical Information Network (UMIN) 000024805; https://upload.umin.ac.jp/cgi-open-bin/ctr_e/ctr_view.cgi?recptno=R000028545.

  • Source: Flickr; Copyright: Marco Verch; URL: https://www.flickr.com/photos/30478819@N08/42778819260; License: Creative Commons Attribution (CC-BY).

    A Digital Intervention for Australian Adolescents Above a Healthy Weight (Health Online for Teens): Protocol for an Implementation and User Experience Study

    Abstract:

    Background: More than one-fourth of Australian adolescents are overweight or obese, with obesity in adolescents strongly persisting into adulthood. Recent evidence suggests that the mid-teen years present a final window of opportunity to prevent irreversible damage to the cardiovascular system. As lifestyle behaviors may change with increased autonomy during adolescence, this life stage is an ideal time to intervene and promote healthy eating and physical activity behaviors, well-being, and self-esteem. As teenagers are prolific users and innate adopters of new technologies, app-based programs may be suitable for the promotion of healthy lifestyle behaviors and goal setting training. Objective: This study aims to explore the reach, engagement, user experience, and satisfaction of the new app-based and Web-based Health Online for Teens (HOT) program in a sample of Australian adolescents above a healthy weight (ie, overweight or obese) and their parents. Methods: HOT is a 14-week program for adolescents and their parents. The program is delivered online through the Moodle app–based and website-based learning environment and aims to promote adolescents’ lifestyle behavior change in line with Australian Dietary Guidelines and Australia’s Physical Activity and Sedentary Behaviour Guidelines for Young People (aged 13-17 years). HOT aims to build parental and peer support during the program to support adolescents with healthy lifestyle behavior change. Results: Data collection for this study is ongoing. To date, 35 adolescents and their parents have participated in one of 3 groups. Conclusions: HOT is a new online-only program for Australian adolescents and their parents that aims to reduce cardiovascular disease risk factors. This protocol paper describes the HOT program in detail, along with the methods to measure reach, outcomes, engagement, user experiences, and program satisfaction. Trial Registration: Australian New Zealand Clinical Trials Registry ACTRN12618000465257; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=374771 International Registered Report Identifier (IRRID): DERR1-10.2196/13340

  • Instruction on the correct use of inhalers. Source: Image created by Authors; Copyright: The Authors; URL: http://www.researchprotocols.org/2019/10/e9585/; License: Creative Commons Attribution (CC-BY).

    Modern Innovative Solutions to Improve Outcomes in Severe Asthma: Protocol for a Mixed Methods Observational Comparison of Clinical Outcomes in MISSION...

    Abstract:

    Background: Asthma that is poorly controlled and undertreated can progress to more severe disease that is associated with high levels of unscheduled care that requires high-cost therapy, leading to a significant health economic burden. The identification and appropriate referral to a specialist asthma service is also often delayed by several months or years because of poor recognition and understanding of symptom severity. Current severe asthma services may take several months to provide a comprehensive multidisciplinary assessment, often necessitating multiple hospital visits and costing up to £5000 per patient. Methods: Modern Innovative Solutions to Improve Outcomes in (MISSION) Severe Asthma is a novel service model developed by asthma specialists from Portsmouth and Southampton severe asthma services. MISSION Severe Asthma identified patients with poorly controlled disease from general practice databases who had not been under secondary outpatient care in the last 12 months or who were not known to secondary care. In 1- or 2-stop assessments, a thorough review of diagnosis, disease phenotype, and control is undertaken, and clinical outcomes collected at baseline. Results: This protocol outlines a mixed methods study to assess the impact on disease control, unscheduled health care usage, and quality of life in patients seen in the MISSION clinic compared with a closely matched cohort who declined to attend. A variety of clinical outcomes will be collected to assess the service model. Conclusions: The results will be reported in June 2019.

  • Source: iStock by Getty Images; Copyright: Nemanja Miscevic; URL: https://www.istockphoto.com/nl/foto/old-hands-on-the-keyboard-gm499594510-80313837; License: Licensed by the authors.

    An Online Minimally Guided Intervention to Support Family and Other Unpaid Carers of People With Dementia: Protocol for a Randomized Controlled Trial

    Abstract:

    Background: About three-quarters of people with dementia live in their own homes, with help from family members and/or other unpaid carers, such as friends or neighbors. Often, unpaid carers themselves experience negative consequences, such as stress, burden, and symptoms of depression or anxiety. Research has shown that these consequences can be alleviated by psychosocial and psychological interventions. Moreover, there are indications that those interventions can be effective when offered online. Objective: This paper describes the protocol of a randomized controlled trial (RCT) that will take place in the Netherlands to evaluate the effectiveness of iSupport, a minimally guided, Internet-based intervention to improve carers’ mental health and coping resources. Methods: A superiority two-arm RCT comparing the effects of the online support program with a waiting-list control condition will be carried out in the Netherlands. The iSupport intervention was developed by the World Health Organization and is based on cognitive behavioral therapy principles. It has five main themes divided into 23 lessons. Carers can pick and choose which lessons they want to complete. We aim to recruit 200 unpaid carers. The experimental group (n=100) will be provided with access to the intervention for 3 months following randomization; those in the waiting-list control group (n=100) will be granted access to the intervention after 3 months. Assessments will be conducted at baseline (T0), 3 months after baseline (post intervention, T1), and 6 months after baseline (follow-up, T2). The primary outcome is perceived stress, measured by the Perceived Stress Scale. Secondary outcomes are symptoms of depression and anxiety, caregiver burden, sense of competence, self-efficacy, mastery, and carers’ attitudes toward dementia and their person-centered approach (ie, to what extent carers tailor the provided care to the interest, needs, and history of the person with dementia). Results: Recruitment for the trial started in January 2019. As of July 2019, we have enrolled 120 participants. Data collection is expected to be completed by March 2020. Once all the data have been collected, we will conduct the data analyses between April and May 2020. We aim to publish our results in a manuscript by June 2020. Conclusions: Online interventions have shown promising results in improving the mental health of carers of people with dementia. Additionally, online interventions may overcome accessibility barriers. If successful, this intervention will have important potential for implementation as a public health intervention, since costs and support by trained staff are minimal. Clinical Trial: Netherlands Trial Register (NTL) NL6417; https://www.trialregister.nl/trial/6417

  • Logo for the University of Washington ALACRITY Center. Source: Small & Mighty Creative; Copyright: The Authors; URL: http://www.researchprotocols.org/2019/10/e14990/; License: Licensed by JMIR.

    Use of Human-Centered Design to Improve Implementation of Evidence-Based Psychotherapies in Low-Resource Communities: Protocol for Studies Applying a...

    Abstract:

    Background: This paper presents the protocol for the National Institute of Mental Health (NIMH)–funded University of Washington’s ALACRITY (Advanced Laboratories for Accelerating the Reach and Impact of Treatments for Youth and Adults with Mental Illness) Center, which uses human-centered design (HCD) methods to improve the implementation of evidence-based psychosocial interventions (EBPIs). We propose that usability—the degree to which interventions and implementation strategies can be used with ease, efficiency, effectiveness, and satisfaction—is a fundamental, yet poorly understood determinant of implementation. Objective: We present a novel Discover, Design/Build, and Test (DDBT) framework to study usability as an implementation determinant. DDBT will be applied across Center projects to develop scalable and efficient implementation strategies (eg, training tools), modify existing EBPIs to enhance usability, and create usable and nonburdensome decision support tools for quality delivery of EBPIs. Methods: Stakeholder participants will be implementation practitioners/intermediaries, mental health clinicians, and patients with mental illness in nonspecialty mental health settings in underresourced communities. Three preplanned projects and 12 pilot studies will employ the DDBT model to (1) identify usability challenges in implementing EBPIs in underresourced settings; (2) iteratively design solutions to overcome these challenges; and (3) compare the solution to the original version of the EPBI or implementation strategy on usability, quality of care, and patient-reported outcomes. The final products from the center will be a streamlined modification and redesign model that will improve the usability of EBPIs and implementation strategies (eg, tools to support EBPI education and decision making); a matrix of modification targets (ie, usability issues) that are both common and unique to EBPIs, strategies, settings, and patient populations; and a compilation of redesign strategies and the relative effectiveness of the redesigned solution compared to the original EBPI or strategy. Results: The UW ALACRITY Center received institutional review board approval for the three separate studies in March 2018 and was funded in May 2018. Conclusions: The outcomes from this center will inform the implementation of EBPIs by identifying cross-cutting features of EBPIs and implementation strategies that influence the use and acceptability of these interventions, actively involving stakeholder clinicians and implementation practitioners in the design of the EBPI modification or implementation strategy solution and identifying the impact of HCD-informed modifications and solutions on intervention effectiveness and quality. Clinical Trial: ClinicalTrials.gov NCT03515226 (https://clinicaltrials.gov/ct2/show/NCT03515226), NCT03514394 (https://clinicaltrials.gov/ct2/show/NCT03514394), and NCT03516513 (https://clinicaltrials.gov/ct2/show/NCT03516513).

  • Source: Flickr; Copyright: NIH Clinical Center; URL: https://www.flickr.com/photos/46300592@N02/27220715681; License: Creative Commons Attribution (CC-BY).

    Deaf Adults’ Health Literacy and Access to Health Information: Protocol for a Multicenter Mixed Methods Study

    Abstract:

    Background: Deaf American Sign Language (ASL) users often struggle with limited health literacy compared with their hearing peers. However, the mechanisms driving limited health literacy and how this may impact access to and understanding of health information for Deaf individuals have not been determined. Deaf individuals are more likely than hearing individuals to use the internet, yet they continue to report significant barriers to health information. This study presents an opportunity to identify key targets that impact information access for a largely marginalized population. Objective: This study aims to elucidate the role of information marginalization on health literacy in Deaf ASL users and to better understand the mechanisms of health literacy in this population for the purpose of identifying viable targets for future health literacy interventions. Methods: This is an exploratory mixed-methods study to identify predictors and moderators of health literacy in the Deaf population. These predictors of health literacy will be used to inform the second step that qualitatively explains the findings, including how Deaf individuals access and understand Web-based health information. Multiple interviewer- and computer-based instruments underwent translation and adaptation, from English to ASL, to make them accessible for the Deaf participants in our study. A planned sample of 450 Deaf ASL users and 450 hearing native English speakers, aged 18 to 70 years, will be recruited from 3 partnering sites: Rochester, NY; Flint, MI; and Chicago, IL. These individuals will participate in a single data collection visit. A subset of participants (approximately 30) with key characteristics of interest will be invited for a second data collection visit to observe and inquire more about their ability to directly access, navigate, and comprehend Web-based health information. The study will help assess how the ways health literacy and information are visualized may differ between Deaf individuals and hearing individuals. The study will also survey participants’ ownership and use of computer and mobile devices and their level of Web-based information use, including health information. Results: Adaptation and translation of protocols and instruments have been completed and are now in use for the study. Recruitment is underway and will continue until late 2020. Results from this study will be used to provide a guide on how to structure Web-based health information in a way that maximizes accessibility and improves health literacy for Deaf individuals. Conclusions: The results from this mixed-methods proposal will advance what is known about health literacy and health information accessibility for Deaf individuals. This innovative study will generate rich data on how to formulate health information and health literacy interventions more accurately to take advantage of visual learning skills.

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  • Influence of cognitive functioning on powered mobility device use: a systematic review protocol

    Date Submitted: Oct 7, 2019

    Open Peer Review Period: Oct 7, 2019 - Dec 2, 2019

    Background: Power mobility devices (PMD) are critical to achieving independent mobility and social participation for many individuals who have trouble walking. Provision of PMD is complex, with cognit...

    Background: Power mobility devices (PMD) are critical to achieving independent mobility and social participation for many individuals who have trouble walking. Provision of PMD is complex, with cognitive functioning expressed by clinicians as a major concern. Indeed, even if PMD use can be predicted by the level of cognitive functioning, outcome tools used to assess readiness do not consider how cognitive functioning may affect PMDs use. Objective: The specific aims of this review are to: (1) identify existing assessments used to assess cognitive functioning and PMD use; (2) classify, according to the International Classification of Functioning Disability and Health, cognitive functions that are identified within existing assessments related to PMD use; (3) explore the relationships between cognitive functioning (i.e., executive function, attention) and PMD use. Methods: A systematic review will be conducted using electronic databases (MEDLINE/Ovid, CINAHL, EMBASE, PsycINFO/Ovid, Web of Science) based on the concepts of PMD performance and capacity, and cognitive functioning. Inclusion criteria: 1) sample of PMD users (inclusive of age and diagnoses); 2) assessment of cognitive functioning, and 3) assessment of PMD capacity or performance. The International Classification of Functioning, Disability and Health will be used to classify cognitive functions. Study quality will be assessed using the Mixed Methods Appraisal Tool. Descriptive syntheses will be done to describe relationships between cognitive functioning and PMD use. Pearson correlation coefficients will be calculated when possible. (Funded by the Quebec Rehabilitation Research Network, approved February 2019). Results: This proposed systematic review protocol has been registered in PROSPERO (CRD42019118957). Conclusions: Results will inform the development of a PMD driving program that aims to enhance cognition. The results of this study will enhance understanding of the influence of cognitive functioning on PMD use and will support clinical practice for choosing appropriate evaluative tools. Clinical Trial: PROSPERO registration: CRD42019118957

  • Developing effective methods for eHealth personalization: protocol for the Health Telescope, a prospective interventional study

    Date Submitted: Oct 2, 2019

    Open Peer Review Period: Oct 2, 2019 - Nov 27, 2019

    Background: This protocol describes the setup of the Health Telescope: a longitudinal panel study that tracks participant activity and recommends eHealth apps to increase this activity. By setting up...

    Background: This protocol describes the setup of the Health Telescope: a longitudinal panel study that tracks participant activity and recommends eHealth apps to increase this activity. By setting up the Health Telescope, we aim to (1) understand more about the long-term use of eHealth applications, (2) measure relationships between short term and long term outcomes to investigate their relation, and (3) test different ways of personalizing eHealth application offerings. Objective: The objectives of this paper are to (1) demonstrate and motivate the validity of the choices we made while setting up the Health Telescope, (2) provide a resource for researchers interested in using Health Telescope data; and (3) act as a guideline for researchers interested in setting up their own longitudinal data collection using wearable devices. Methods: We will set up a panel consisting of 1.000 Dutch adults. Participant's physical activity, phone usage, and their mood will be assessed. A machine learning model will be used to generate personalized eHealth recommendations: our setup uniquely enables us to estimate the long term effects of these personalized eHealth offerings. Results: The data collection software has been developed and all the legal and ethical checks are in place. Recruitment is scheduled to start in Q4 of 2019. Initial results will be published Q1 of 2020. Conclusions: The aim of the Health Telescope is to investigate how different individuals respond to different ways of being encouraged to increase their physical activity. In this paper we detail the setup, methods, and analysis plan that enable us to reach this aim.

  • Integration of mHealth into Sickle Cell Disease Care to Increase Hydroxyurea Utilization (mESH) – An Efficacy and Implementation Study

    Date Submitted: Sep 24, 2019

    Open Peer Review Period: Sep 24, 2019 - Nov 19, 2019

    Background: Hydroxyurea therapy prevents disease complications among patients with sickle cell disease (SCD). Despite the evidence for its efficacy and endorsement by the National Health Lung and Bloo...

    Background: Hydroxyurea therapy prevents disease complications among patients with sickle cell disease (SCD). Despite the evidence for its efficacy and endorsement by the National Health Lung and Blood Institute (NHLBI) evidence-based guidelines, adoption of this therapy is low, both by patients with SCD and their providers. Mobile health (mHealth) applications provide benefit in improving medication adherence and self-efficacy among patients with chronic diseases and have facilitated prescribing among medical providers. However, mHealth has not been systematically tested as a tool to increase hydroxyurea use in SCD, nor has the combination of mHealth been assessed at both patient and provider levels. Objective: To increase hydroxyurea utilization through a combined two-level mHealth intervention approach for both patients with SCD and their providers. The goals are to increase adherence to hydroxyurea therapy among patients with SCD and improve hydroxyurea prescribing behavior among providers of patients with SCD. Methods: We will test the efficacy of two mHealth interventions to increase both patients’ and providers’ utilization and knowledge of hydroxyurea within eight clinical sites of the NHLBI-funded Sickle Cell Disease Implementation Consortium (SCDIC). The patient mHealth intervention, InCharge Health, includes multiple components that addresses memory, motivation, and knowledge barriers to hydroxyurea use. The provider mHealth intervention, Hydroxyurea Toolbox (HU Toolbox) addresses the clinical knowledge barriers in prescribing and monitoring hydroxyurea. The primary hypothesis is that among adolescents and adults with SCD, adherence to hydroxyurea, as measured by the proportion of days covered (the ratio of the number of days the patient is covered by the medication to the number of days in the treatment period), will increase by at least 20% after 24 weeks of receiving the InCharge Health app, compared to their adherence at baseline. As secondary objectives, we will 1) examine the change in health-related quality of life, acute disease complications, perceived health literacy and perceived self-efficacy in taking hydroxyurea among patients who use InCharge Health, and 2) examine potential increases in the awareness of hydroxyurea benefits and risks, appropriate prescribing, and perceived self-efficacy to correctly administer hydroxyurea therapy among SCD providers between baseline and 9 months of using the HU Toolbox app. We will measure the reach, adoption, implementation, and maintenance of both the InCharge Health and the HU Toolbox apps using the RE-AIM framework, and qualitatively evaluate the implementation of both mHealth interventions. Results: The study is currently enrolling study participants. Recruitment is anticipated to be complete by mid-2021. Conclusions: If this two-level intervention, the combined use of InCharge Health and HU Toolbox apps, demonstrates efficacy in increasing adherence to hydroxyurea and prescribing behavior in patients with SCD and their providers, respectively, both apps will be offered to other institutions outside the SCDIC through a future larger implementation-effectiveness study. Clinical Trial: NCT04080167

  • Perspectives and experiences of policy-makers, researchers, health-information technology professionals, and the public on evidence-based health policies: A protocol of the KhITT framework.

    Date Submitted: Sep 16, 2019

    Open Peer Review Period: Sep 15, 2019 - Nov 10, 2019

    Background: Evidence-based health policy (EBHP) development is critical to the judicious use of public funds. EBHPs increase transparency, accountability, effectiveness and efficiency of policies. Enc...

    Background: Evidence-based health policy (EBHP) development is critical to the judicious use of public funds. EBHPs increase transparency, accountability, effectiveness and efficiency of policies. Encouraging collaboration between researchers/knowledge producers (KPs) and policy-makers (PMs) is important, because both communities have distinct professional cultures resulting in working separately without understanding each other. Knowledge sharing is a complex process that requires understanding of cultural aspects that may reduce cultural differences and increase use of common language. Health information technology (HIT) is a useful tool to increase knowledge translation (KT) that may result in transparent use of evidence and networking in developing EBHPs. Our vision is to leverage HIT tools for a better health system that includes digitalized, open source, evidence-based, and transparent ways for collaboration and development of robust mechanisms, and sharing synthesized evidence with knowledge-user friendly forms. Objective: The aim is to develop a conceptual framework on KT and HIT for transparency in policy-making process and EBHPs (the KhITT framework), which will be informed by the views of four key-stakeholder groups (i.e., PMs, KPs, HIT professionals, the public) toward EBHPs. The informants may also describe practices that demonstrate EBHP process and suggest technology platforms to enable this process. Methods: We propose an exploratory descriptive qualitative study in British Columbia, Canada using in-depth, semi-structured interviews. To ensure data saturation and trustworthiness, we will use a non-probability purposive, snowball sample of up to 15 eligible participants in each of four stakeholder groups. We will analyze the data using content analysis. Ethics approval has already obtained by the harmonized Behavioural Research Ethics Board at the University of British Columbia. Results: The KhITT framework focuses on various stakeholders’ perspectives including for better understanding their perceived needs and priorities in identifying issues with EBHP to make informed recommendations. Currently (September 2019), we are recruiting study participants. The anticipated completion date for data collection to be end of January 2020. We estimate the expected findings of this study to be published end of the year 2020. Conclusions: Our ultimate goal of this study is to develop a conceptual framework and describe the technology platforms that would enable the EBHP process. We anticipate that our rigorous content analysis can produce insights and themes able to address our objectives, contribute to an in-depth understanding of the EBHP process within British Columbia, highlight all influential factors, explicitly disseminate and communicate the study results, identify issues with EBHP and provide informed recommendations to address them, and enhance efforts toward transparent EBHPs. Clinical Trial: N/A

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