An Innovative Lab-Based Training Program to Help Patient Groups Understand Their Disease and the Research Process

The Community Research Fellows Training program is designed to enhance capacity for community-based participatory research; program participants completed a 15-week, Master of Public Health curriculum. We conducted qualitative, semistructured interviews with 81 participants from two cohorts to evaluate the learning environment and how the program improved participants’ knowledge of public health research. Key areas that provided a conducive learning environment included the once-a-week schedule, faculty and participant diversity, and community-focused homework assignments. Participants discussed how the program enhanced their understanding of the research process and raised awareness of public health–related issues for application in their personal lives, professional occupations, and in their communities. These findings highlight key programmatic elements of a successful public health training program for community residents.

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Practice-based evidence research design for lymphedema management

10.32469/10355/68951 ◽

2018 ◽

Author(s):

◽

Dorit Tidhar

Keyword(s):

Research Design ◽

Computerized Adaptive Testing ◽

Physical Therapists ◽

National Health System ◽

Large Data ◽

Healthcare Services ◽

Research Process ◽

Documentation System ◽

Data Set ◽

Patient Groups

Lymphedema (LE) is treated in Maccabi Healthcare Services (Maccabi) by LE physical therapists (LPTs). Until today, the knowledge of the extent of the problem in Israel, the interventions for patients with LE, and the effectiveness of these treatments were not well studied. The aims of this dissertation were to: (1) describe the treatment code documentation as part of the PBE process and to evaluate the accuracy of treatment code documentation by LPTs in Maccabi; (2) examine the known-group construct validity of functional status (FS) scores on patients with LE at Maccabi; and (3) describe characteristics of the patients with lymphedema treated at Maccabi between the years of 2010-2017. We used a Practice-based Evidence (PBE) research design to develop a new module for LE in the Maccabi electronic medical record (EMR) to support the gathering of data to address these gaps. The intra-rater reliability of arm and leg measurements by trained LPTs was found to be very high. The treatment code documentation system in the EMR was found to be clear and accurately used by most LPTs. Specific needs for improvement were identified. The computerized adaptive testing of FS score discriminated between patient groups in clinically logical ways both at intake into and discharge from LE treatments. Finally, descriptive analyses of the patients treated by LPT's in Maccabi revealed trends in physician diagnosis and referral, LPT classifications of LE, treatment interventions, co-morbidities, and more. This is the first time such a PBE research process was conducted in a large data set in a national health system for therapists treating patients with LE, laying the foundation for on-going research and application.

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A training program to qualify people with intellectual disabilities for inclusive research

European Journal of Public Health ◽

10.1093/eurpub/ckaa165.181 ◽

2020 ◽

Vol 30 (Supplement_5) ◽

Author(s):

C Grebe ◽

M Voß ◽

L Heitland ◽

S Nadolny ◽

ÄD Latteck

Keyword(s):

Intellectual Disabilities ◽

Training Program ◽

Research Question ◽

Team Building ◽

Research Process ◽

Research Approach ◽

Structured Interviews ◽

Health Related ◽

People With Intellectual Disabilities ◽

The Individual

Abstract Background Inclusive research aims to involve people with intellectual disabilities (ID) with their views and values in all steps of the research process. But there is a lack of published training programs that address the qualification of people with ID for their roles as co-researchers. Objectives The aim was to develop a training program, based on constructivist didactics, in order to empower people with ID to act as initiators of health-related research, interviewers, data analysts and authors. In addition, the program aims to promote social self-organization and health literacy. The program consists of four steps: 1) Recruiting, relationship and team building; 2) Analysis of communication skills; 3) Choice of topic and formulation of a research question relevant to the lifeworld of the co- researchers 4) Exercises, carried out with an open, flexible approach, taking into account the individual biographies, knowledge, skills and interests of the team. Professional researchers moderate this process and promote the activation of knowledge and experiences. The whole process comprised weekly team meetings over a period of 7 months. Results The co-researchers were successfully empowered to deal with new kinds of demands and tasks. As of March 2020, the co- researchers selected pain as their topic and successfully formulated research questions, developed a guideline for semi-structured interviews and acquired essential interviewing skills. Data collection and analysis are still pending. Conclusions The implemented inclusive research approach pursued here, offers opportunities for generating research findings that are more relevant for the target group and their lifeworld. Consequently, professionals can better address the needs of their clients and develop tailored interventions. For the involved co-researchers with ID the training program seems to be successful in empowering them in decision-making and in reflecting on their own and other's health-related needs. Key messages People with intellectual disabilities can successfully be qualified as co-researchers with a 7-months weekly training program. The training program helps the co-researchers in reflecting on their own and other’s health-related needs.

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Prioritizing Patient Perspectives When Designing Intervention Studies for Homeless Older Adults

Research on Social Work Practice ◽

10.1177/1049731521995558 ◽

2021 ◽

pp. 104973152199555

Author(s):

Sarah L. Canham ◽

Harvey Bosma ◽

Anita Palepu ◽

Scott Small ◽

Chris Danielsen

Keyword(s):

Older Adults ◽

Older People ◽

Intervention Studies ◽

Research Process ◽

Participant Recruitment ◽

Research Teams ◽

Vulnerable Patient ◽

Trauma Informed ◽

Patient Groups ◽

Peer Researchers

Purpose: Medical respite provides postacute care to people experiencing homelessness upon hospital discharge if they are too sick to recover on the streets or in a traditional shelter. The current study examined the feasibility of conducting a study to test the effectiveness of a medical respite intervention for older people experiencing homelessness. Methods: Fifteen patient and 11 provider participants were interviewed between July and November 2018. Results: Participants’ considerations for how to design a program of research included (1) desired qualities of researchers; (2) preferences for study design; (3) mechanisms for participant recruitment and retention; (4) what, where, and how to collect data; and (5) barriers and motivations to participation. Conclusions: Findings from this study build on an emerging research base on how to appropriately engage vulnerable patient groups, including older people experiencing homelessness, in trauma-informed research by including peer researchers on research teams to serve as advisors throughout the research process.

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1000 HPK Parenting Promotion Program in Kepulauan Seribu 2018-2020: Reviewed from The Theory of Hafied Cangara Communication Strategy

Iapa Proceedings Conference ◽

10.30589/proceedings.2021.513 ◽

2021 ◽

pp. 33

Author(s):

Restu Rahmawati ◽

Clara Cindy

Keyword(s):

Training Program ◽

Research Process ◽

Communication Strategy ◽

Face To Face ◽

Promotion Program ◽

Implementation Evaluation ◽

Descriptive Research ◽

Parenting Training ◽

National Priority ◽

Thousand Islands

This study aims to determine about 1000 HPK Parenting Promotion Program In Kepulauan Seribu 2018-2020: Reviewed from the Theory of Hafied Cangara Communication Strategy. This type of research is descriptive research using qualitative methods. Collecting data by conducting observations, interviews, and documentation. The communication strategy carried out by the Thousand Islands PPAPP Sub-Department refers to Hafied Cangara's theory, where in this case the communication strategy in the KIE promotion program for the Care of 1000 HPK is carried out through the first stage and then continues with planning, implementation, evaluation and reporting. The results showed that the communication strategy carried out in the 1000 HPK KIE Promotion Program was carried out through a 1000 HPK parenting training program directly face to face while practicing using the tools provided and online through webinars. In the process of implementing the program, referring to the 2018 National Priority Promotion Projection Technical Guidelines and KIE for the First 1000 Days of Life (HPK). According to Hafied Cangara's theory, the failure of the communication strategy of the 1000 HPK KIE Parenting Promotion Program for 2018- 2020 is the absence of a research process first carried out Kepulauan Seribu Sub-Department PPAPP. 1000 HPK 2018-2020. Thus, to realize the 1000 HPK Care KIE program 2018-2020 to the fullest, a process is needed before the program is implemented so that it is right on target and the community is enthusiastic about participating in the 1000 HPK Care KIE Promotion program.

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Competencias investigativas en los docentes beneficiados por la estrategia de formación y acceso para la apropiación pedagógica de las TIC

Tendencias ◽

10.22267/rtend.151601.39 ◽

2015 ◽

Vol 16 (1) ◽

pp. 175

Author(s):

Luis Eduardo Paz Saavedra

Keyword(s):

Training Program ◽

Research Process ◽

Point Of View ◽

Classroom Teaching ◽

Research Development ◽

Research Activities ◽

Teachers And Students ◽

The University

El presente artículo recoge los resultados de la investigación realizada en los departamentos de Cauca, Nariño y Putumayo, luego de la formación ofrecida por el programa Computadores para Educar y la Universidad de Nariño en el diplomado “Apropiación Pedagógica de las TIC”. El estudio aborda el fortalecimiento de competencias investigativas luego de dicha formación y del desarrollo de proyectos pedagógicos de aula en los que se pretende la solución de problemáticas propias del contexto de profesores y estudiantes. Entre los aspectos analizados se destaca la actitud que tienen los docentes frente al papel de las TIC en los procesos investigativos, la forma en que estas tecnologías contribuyen a actividades investigativas y a competencias específicas que se ven fortalecidas en este campo. Adicionalmente se analizan los factores que tienen incidencia en todo el proceso, las oportunidades y dificultades a tenerse en cuenta en busca del fortalecimiento de dichas competencias, así como los elementos relevantes cuando se trata de realizar la integración de TIC en los currículos escolares, a fin de mejorar las posibilidades de desarrollo de la investigación escolar.ABSTRACTThis paper presents the results of a research conducted in the departments of Cauca, Nariño and Putumayo, after the completion of a training program offered by Computadores para Educar and the University of Nariño in the course “Pedagogical Appropriation of the IT”. This study approaches the improvement of investigative skills after the completion of the mentioned training and the development of classroom teaching projects in which it’s expected to find a solution for issues relevant from a teachers and students point of view. Among the analyzed aspects, are highlighted the attitude that teachers have towards the role of the IT in the research process, how these technologies contribute to research activities and specific skills that are strengthened in this field. Additionally, the factors that impact the process are discussed; likewise, the opportunities and challenges to be considered in the seek to strengthen such skills as well as relevant elements when it comes to integrating the IT into school curriculums in order to improve the chances of scholar research development.

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Understanding the perceived impact and value of research advocacy initiatives for colorectal cancer

10.21203/rs.3.rs-69337/v1 ◽

2020 ◽

Author(s):

Reese Garcia ◽

Andrea J. Dwyer ◽

Sharyn Worrall ◽

Anjelica Q. Davis ◽

Nancy Roach

Keyword(s):

Colorectal Cancer ◽

Training Program ◽

Research Process ◽

Institutional Review Boards ◽

Delivery Of Care ◽

Advocacy Training ◽

Patient Voice ◽

Institutional Review ◽

Patient Values ◽

Advocacy Program

Abstract Background Research advocacy utilizes patient insight to progress research, ensuring that patient values remain a priority. It is integral to inform activities such as designing clinical trials, providing perspectives on Institutional Review Boards (IRB’s), and reviewing research grants. As a leader in colorectal cancer (CRC) advocacy, Fight Colorectal Cancer (Fight CRC) developed a formal research advocacy training program in 2015 with the goal of preparing CRC advocates to become the most educated patient voice at the research table. Methods To understand the effectiveness of a research advocacy training program and subsequently research advocacy as a whole, Fight CRC distributed online questionnaires between December 2018 and July 2019 to oncology professionals who had previously worked with Fight CRC research advocates, including physicians, program directors, and consumer review administrators. A questionnaire was also disseminated to Fight CRC research advocates. Results In total, twenty-six stakeholders participated and 89% agreed/strongly agreed that there was value in having the patient voice in research. Respondents reported that advocates provide a perspective that would not otherwise be considered in the research process. Fourteen research advocates participated in the survey and the majority indicated that the research advocacy program equipped them to sit on panels and provide effective insight. All research advocates believed that their patient insight is taken seriously by the research community. Conclusion In order for research advocacy to have a significant impact and a high perceived value on research, it is important to establish an effective training program to support adult learning. In addition, it is necessary for researchers to understand how advocates can positively influence their work, and how the scientific community can engage with and leverage research advocacy to its fullest potential to improve scientific research, delivery of care, and quality of life for patients with cancer.

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Development and evaluation of a virtual patient-centered outcomes research training program for the cystic fibrosis community

Research Involvement and Engagement ◽

10.1186/s40900-021-00328-4 ◽

2021 ◽

Vol 7 (1) ◽

Author(s):

Emily M. Godfrey ◽

Erin K. Thayer ◽

Laura Mentch ◽

Traci M. Kazmerski ◽

Georgia Brown ◽

...

Keyword(s):

Cystic Fibrosis ◽

Training Program ◽

Outcomes Research ◽

Research Training ◽

Training Session ◽

Research Process ◽

Group Training ◽

Patient Centered ◽

Session Satisfaction ◽

Community Patients

Abstract Background Patient-centered outcomes research (PCOR) emphasizes patient-generated research priorities and outcomes, and engages patients throughout every stage of the research process. In the cystic fibrosis (CF) community, patients frequently provide input into research studies, but rarely are integrated onto research teams. Therefore, we developed and evaluated a virtual pilot PCOR training program to build PCOR capacity in the CF community (patients, caregivers, researchers, nonprofit stakeholders and providers). We aimed to show changes among participants’ perceived PCOR knowledge (a.k.a PCOR knowledge), confidence in engaging stakeholders, and post-training session satisfaction. Methods Guided by a prior CF community educational needs assessment, our researcher and patient-partner team co-developed a four-part virtual online training program. We structured the program towards two learner groups: patients/caregivers and researchers/providers. We evaluated participants’ PCOR knowledge, confidence in engaging stakeholders, and session satisfaction by administering 5-point Likert participant surveys. We tested for significant differences between median ratings pre- and post-training. Results A total of 28 patients/caregivers, and 31 researchers/providers participated. For both learner groups, we found the training resulted in significantly higher PCOR knowledge scores regarding “levels of engagement” (p = .008). For the patient/caregiver group, training significantly increased their PCOR knowledge about the barriers/enablers to doing PCOR (p = .017), effective PCOR team elements (p = .039), active participation (p = .012), and identifying solutions for successful PCOR teams (p = .021). For the researcher/healthcare provider group, training significantly increased participants’ ability to describe PCOR core principles (p = .016), identify patient-partners (p = .039), formulate research from patient-driven priorities (p = .039), and describe engagement in research grants (p = .006). No learner group had significant changes in their confidence score. Most participants were either “satisfied” or “very satisfied” with the training program. Conclusions Overall, our virtual pilot PCOR training program was well received by patients, caregivers, researchers and providers in the CF community. Participants significantly improved their perceived knowledge with core PCOR learning items. Trial registration Retrospectively registered at clinicaltrials.gov (NCT04999865).

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An Online Training Program to Enhance Novice Researchers’ Knowledge and Skills

Scholarship and Practice of Undergraduate Research ◽

10.18833/spur/4/4/4 ◽

2021 ◽

Vol 4 (4) ◽

pp. 33-41

Author(s):

Lynn Gilbertson ◽

Jeannine Rowe ◽

Yeongmin Kim ◽

Catherine W. M. Chan ◽

Naomi Schemm ◽

...

Keyword(s):

Research Ethics ◽

Training Program ◽

Communication Skills ◽

Information Literacy ◽

Online Training ◽

Research Process ◽

Process Information ◽

Content Areas ◽

Knowledge And Skills

This article describes a multidisciplinary, asynchronous,10-hour online training program for undergraduates enrolled in a mentored research apprentice program, addressing communication skills, knowledge of the research process, information literacy, and research ethics. Results revealed significant perceived gains in all four content areas (p < 0.001) with no significant differences across disciplines.

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Involving Parents and Children in Community-Engaged Research

Ethics and Research with Children ◽

10.1093/med-psych/9780190647254.003.0012 ◽

2018 ◽

pp. 206-226

Author(s):

Erin Talati Paquette ◽

Lainie Friedman Ross

Keyword(s):

Stakeholder Engagement ◽

Moral Agency ◽

Conflicts Of Interest ◽

Human Subjects ◽

Research Process ◽

Privacy Concerns ◽

Community Engaged Research ◽

Parents And Children ◽

Patient Groups ◽

Protection Of Human Subjects

Stakeholder engagement in research is increasingly relied upon for its potential to increase the relevance of research, improve transparency of the research process, and translate evidence into practice. Engaging communities in research provides research teams with unique views into the needs, interests, and skills of public stakeholders including healthy volunteers, advocacy groups, patient groups, and their families and/or caregivers. This chapter considers key ethical considerations for researchers contemplating community-engaged research, including how to think about protection of human subjects and privacy, concerns regarding conflicts of interest and group harms, and compensation in community-engaged research. These concerns are heightened and further complicated in community-engaged pediatric research because of the additional vulnerabilities of children. In the pediatric setting, the scope of child participation, consent, and compensation deserve special attention, with respect to and for the evolving but not yet fully developed moral agency of children.

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