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Recent advances in therapy and the promulgation of multidisciplinary pulmonary embolism teams show great promise to improve management and outcomes of acute pulmonary embolism (PE). However, the absence of randomized evidence and lack of consensus leads to tremendous variations in treatment and compromises the wide implementation of new innovations. Moreover, the changing landscape of health care, where quality, cost, and accountability are increasingly relevant, dictates that a broad spectrum of outcomes of care must be routinely monitored to fully capture the impact of modern PE treatment. We set out to standardize data collection in patients with PE undergoing evaluation and treatment, and thus establish the foundation for an expanding evidence base that will address gaps in evidence and inform future care for acute PE. To do so, >100 international PE thought leaders convened in Washington, DC, in April 2022 to form the Pulmonary Embolism Research Collaborative. Participants included physician experts, key members of the US Food and Drug Administration, patient representatives, and industry leaders. Recognizing the multidisciplinary nature of PE care, the Pulmonary Embolism Research Collaborative was created with representative experts from stakeholder medical subspecialties, including cardiology, pulmonology, vascular medicine, critical care, hematology, cardiac surgery, emergency medicine, hospital medicine, and pharmacology. A list of critical evidence gaps was composed with a matching comprehensive set of standardized data elements; these data points will provide a foundation for productive research, knowledge enhancement, and advancement of clinical care within the field of acute PE, and contribute to answering urgent unmet needs in PE management. Evidence produced through the Pulmonary Embolism Research Collaborative, as it is applied to data collection, promises to provide crucial knowledge that will ultimately produce a robust evidence base that will lead to standardization and harmonization of PE management and improved outcomes.
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The African Research Group for Oncology (ARGO) was formed in 2013 to undertake methodologically rigorous cancer research in Nigeria, and to strengthen cancer research capacity in the country through training and mentorship of physicians, scientists, and other healthcare workers. Here, we describe how ARGO's work in colorectal cancer (CRC) has evolved over the past decade. This includes the consortium's scientific contributions to the understanding of CRC in Nigeria and globally and its research capacity-building program.
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Neoplasias Colorrectales , Personal de Salud , Humanos , Nigeria/epidemiología , Neoplasias Colorrectales/terapiaRESUMEN
The UK neurosurgical community has a track record of delivering high-quality, practice-changing clinical research studies, facilitated by a robust clinical research infrastructure and close collaborations between neurosurgical centers. More recently, these large-scale studies have been conceived, developed, and delivered by neurosurgical trainees, working under the umbrella of the British Neurosurgical Trainee Research Collaborative (BNTRC). In this paper, we outline the current landscape of large-scale neurosurgical studies in the UK, focusing on the role of trainees in facilitating this research. Importantly, we focus on our experience of trainee-led studies, including the development of the network, current challenges, and future directions. We believe that a similar model can be applied in different settings and countries, which will drive up the quality of neurosurgical research, ultimately benefiting future neurosurgical patients.
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Investigación Biomédica , Humanos , Reino UnidoRESUMEN
AIMS: This study reviews the past 30 years of research from the Canadian Orthopedic Trauma Society (COTS), to identify predictive factors that delay or accelerate the course of randomized controlled trials in orthopaedic trauma. METHODS: We conducted a methodological review of all papers published through the Canadian Orthopaedic Trauma Society or its affiliates. Data abstracted included: year of publication; journal of publication; study type; number of study sites; sample size; and achievement of sample size goals. Information about the study timelines was also collected, including: the date of study proposal to COTS; date recruitment began; date recruitment ended; and date of publication. RESULTS: In total, 22 studies have been published through the COTS working group, 13 of which are randomized controlled trials (RCTs). In total, 1,423 individual patients have been involved in COTS studies, a mean of 110 patients per trial (22 to 424). Each study was conducted across a mean of approximately six centres (1 to 11) and took nearly ten years (mean 119.9 months (59 to 188)) from presentation of concept to publication. The mean length of enrolment was 63 months (26 to 113) and the mean time from cessation of enrolment to publication 51 months (19 to 78). Regardless of sample size, the only factor associated with a decreased length of enrolment was a higher number of clinical sites (p = 0.041). Neither study sample size nor length of enrolment were associated with total time to publication. CONCLUSION: Over the last three decades, COTS has developed a multinational strategy to produce high-quality evidence in the field of orthopaedic trauma through 13 multicentre RCTs. Future efficiencies can be realized by recruitment of more clinical sites, improving connectivity between the sites, and the promotion of national streamlined ethics processes. Cite this article: Bone Joint J 2021;103-B(5):898-901.
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Ortopedia , Publicaciones Periódicas como Asunto , Edición/estadística & datos numéricos , Traumatología , Canadá , Humanos , Ensayos Clínicos Controlados Aleatorios como Asunto , Sociedades MédicasRESUMEN
INTRODUCTION: Achieving a standard of clinical research at the pinnacle of the evidence pyramid is historically expensive and logistically challenging. Research collaboratives have delivered high-impact prospective multicentre audits and clinical trials by using trainee networks with a range of enabling technology. This review outlines such use of technology in the UK and provides a framework of recommended technologies for future studies. METHODS: A review of the literature identified technology used in collaborative projects. Additional technologies were identified through web searches. Technologies were grouped into themes including access (networking and engagement), collaboration and event organisation. The technologies available to support each theme were studied further to outline relative benefits and limitations. FINDINGS: Thirty-three articles from trainee research collaboratives were identified. The most frequently documented technologies were social media applications, website platforms and research databases. The Supportive Technologies in Collaborative Research framework is proposed, providing a structure for using the technologies available to support multicentre collaboration. Such technologies are often overlooked in the literature by established and start-up collaborative project groups. If used correctly, they might help to overcome the physical, logistical and financial barriers of multicentre clinical trials.
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Investigación Biomédica/métodos , Tecnología Biomédica/métodos , Conducta Cooperativa , Relaciones Interprofesionales , Ensayos Clínicos como Asunto , Comunicación , Cirugía General/educación , Humanos , Internet , Redes Sociales en Línea , Estudiantes de MedicinaRESUMEN
BACKGROUND: Trainee research collaboratives (TRCs) have pioneered high quality, prospective 'snap-shot' surgical cohort studies in the UK. Outcomes After Kidney injury in Surgery (OAKS) was the first TRC cohort study to attempt to collect one-year follow-up data. The aims of this study were to evaluate one-year follow-up and data completion rates, and to identify factors associated with improved follow-up rates. METHODS: In this multicentre study, patients undergoing major gastrointestinal surgery were prospectively identified and followed up at one-year following surgery for six clinical outcomes. The primary outcome for this report was the follow-up rate for mortality at 1 year. The secondary outcome was the data completeness rate in those patients who were followed-up. An electronic survey was disseminated to investigators to identify strategies associated with improved follow-up. RESULTS: Of the 173 centres that collected baseline data, 126 centres registered to participate in one-year follow-up. Overall 62.3% (3482/5585) of patients were followed-up at 1 year; in centres registered to collect one-year outcomes, the follow-up rate was 82.6% (3482/4213). There were no differences in sex, comorbidity, operative urgency, or 7-day postoperative AKI rate between patients who were lost to follow-up and those who were successfully followed-up. In centres registered to collect one-year follow-up outcomes, overall data completeness was 83.1%, with 57.9% (73/126) of centres having ≥95% data completeness. Factors associated with increased likelihood of achieving ≥95% data completeness were total number of patients to be followed-up (77.4% in centres with < 15 patients, 59.0% with 15-29 patients, 51.4% with 30-59 patients, and 36.8% with > 60 patients, p = 0.030), and central versus local storage of patient identifiers (72.5% vs 48.0%, respectively, p = 0.006). CONCLUSIONS: TRC methodology can be used to follow-up patients identified in prospective cohort studies at one-year. Follow-up rates are maximized by central storage of patient identifiers.
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Bases de Datos Factuales/estadística & datos numéricos , Procedimientos Quirúrgicos del Sistema Digestivo/estadística & datos numéricos , Educación/estadística & datos numéricos , Evaluación de Resultado en la Atención de Salud/estadística & datos numéricos , Anciano , Recolección de Datos/métodos , Recolección de Datos/estadística & datos numéricos , Procedimientos Quirúrgicos del Sistema Digestivo/métodos , Educación/métodos , Educación/normas , Femenino , Estudios de Seguimiento , Guías como Asunto/normas , Humanos , Estudios Longitudinales , Masculino , Persona de Mediana Edad , Evaluación de Resultado en la Atención de Salud/métodos , Estudios ProspectivosRESUMEN
INTRODUCTION: The National Research Collaborative Meeting (NRCM) 2017 was jointly hosted between the West Midlands Research Collaborative (WMRC) and Student Audit and Research in Surgery (STARSurg) on 30th November 2017 in Birmingham. The NRCM 2017 theme was 'Challenging Traditional Research'. METHODS: Narrative review, outlining key challenges and recommendations for trainee collaborative research groups across medical and surgical disciplines based on the core themes from the NRCM 2017 meeting. RESULTS: Core themes of: (1) surgical oncology trials; (2) placebo-controlled surgical trials; (3) research funding; (4) medical student involvement in research; (5) emergency care; (6) patient and public involvement. Recommendations were made for planning future collaborative studies, based on these topic areas. CONCLUSIONS: The collaborative research model has demonstrated longevity and effectiveness in delivering high-quality, practice-changing research both within the NHS and internationally. Learning between groups and highlighting areas for interdisciplinary collaboration will drive a meaningful, patient-centred agenda for the future.
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INTRODUCTION: The Academic Surgical Collaborative (ASC) is a trainee research collaborative (TRC) formed in the UK in October 2014. Three years on, the achievements are presented along with advice for emerging and established TRCs. Methods: A retrospective review of internal, member-maintained ASC records was conducted. Membership numbers, PubMed indexed publications, presentations and prizes awarded were all calculated over time. Google Scholar was used to calculate citations per ASC publication. An online survey was distributed to members to ascertain member satisfaction. RESULTS: With 62 active members (predominantly medical students) the ASC has published 33 PubMed indexed papers over three years, with a mean of 21 citations per paper (SD 89, range 0-491). 54 presentations have been delivered and eight prizes have been awarded for ASC research projects. 60% of ASC members believe the ASC delivers research that improves patient care. Key learning points for the ASC have been the use of a set of resources distributed to new members, the value of regular meetings, close mentoring throughout research projects to develop the skills of junior researchers, encouragement for junior members to present at conferences, and an ongoing focus on research conduct and improving evidence based medicine. CONCLUSIONS: The ASC has fulfilled many of its goals set out at its inception. The ASCs subsequent aims are to enhance existing research training for junior members, advances in the field of core outcome development and also multi-collaborative research.
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This qualitative inquiry explored the processes and practices of collaboration as experienced by a group of Australian multidisciplinary Aboriginal and non-Aboriginal health workers. Each worker had participated, for a period of 2 to 5 years, in an Australian Government-funded project in which a range of health initiatives led to improved access to cancer services by Aboriginal communities in a rural region of South Eastern Australia. Initiatives which addressed high rates of mortality from cancer, poor access to cancer screening, and engagement with cancer treatment were developed through the formation of close working relationships between Aboriginal and non-Aboriginal health workers. These relationships were regarded as personally and professionally transformative. Through the sharing of knowledge, skills, and experiences, new ways of knowing, being, and doing emerged. Developing a deeper understanding of cross-cultural collaboration is one way of addressing complex health problems and building the capacity of the health workforce.
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Personal de Salud/organización & administración , Accesibilidad a los Servicios de Salud/organización & administración , Servicios de Salud del Indígena/organización & administración , Disparidades en Atención de Salud/etnología , Nativos de Hawái y Otras Islas del Pacífico , Neoplasias/etnología , Conducta Cooperativa , Competencia Cultural , Detección Precoz del Cáncer , Grupos Focales , Conocimientos, Actitudes y Práctica en Salud , Humanos , Neoplasias/diagnóstico , Neoplasias/terapia , Investigación Cualitativa , Población Rural , Australia del Sur , ConfianzaRESUMEN
OBJECTIVE Symptomatic chronic subdural hematoma (CSDH) will become an increasingly common presentation in neurosurgical practice as the population ages, but quality evidence is still lacking to guide the optimal management for these patients. The British Neurosurgical Trainee Research Collaborative (BNTRC) was established by neurosurgical trainees in 2012 to improve research by combining the efforts of trainees in each of the United Kingdom (UK) and Ireland's neurosurgical units (NSUs). The authors present the first study by the BNTRC that describes current management and outcomes for patients with CSDH throughout the UK and Ireland. This provides a resource both for current clinical practice and future clinical research on CSDH. METHODS Data on management and outcomes for patients with CSDH referred to UK and Ireland NSUs were collected prospectively over an 8-month period and audited against criteria predefined from the literature: NSU mortality < 5%, NSU morbidity < 10%, symptomatic recurrence within 60 days requiring repeat surgery < 20%, and unfavorable functional status (modified Rankin Scale score of 4-6) at NSU discharge < 30%. RESULTS Data from 1205 patients in 26 NSUs were collected. Bur-hole craniostomy was the most common procedure (89%), and symptomatic recurrence requiring repeat surgery within 60 days was observed in 9% of patients. Criteria on mortality (2%), rate of recurrence (9%), and unfavorable functional outcome (22%) were met, but morbidity was greater than expected (14%). Multivariate analysis demonstrated that failure to insert a drain intraoperatively independently predicted recurrence and unfavorable functional outcome (p = 0.011 and p = 0.048, respectively). Increasing patient age (p < 0.00001), postoperative bed rest (p = 0.019), and use of a single bur hole (p = 0.020) independently predicted unfavorable functional outcomes, but prescription of high-flow oxygen or preoperative use of antiplatelet medications did not. CONCLUSIONS This is the largest prospective CSDH study and helps establish national standards. It has confirmed in a real-world setting the effectiveness of placing a subdural drain. This study identified a number of modifiable prognostic factors but questions the necessity of some common aspects of CSDH management, such as enforced postoperative bed rest. Future studies should seek to establish how practitioners can optimize perioperative care of patients with CSDH to reduce morbidity as well as minimize CSDH recurrence. The BNTRC is unique worldwide, conducting multicenter trainee-led research and audits. This study demonstrates that collaborative research networks are powerful tools to interrogate clinical research questions.
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In this study, we explore community members' overall understanding and experience with biomedical research engagement. We conducted a qualitative analysis to explore a concept that emerged but was not specifically addressed in a pre-existing dataset obtained using four focus group sessions with 30 urban-dwelling community members. Transcripts were read in an iterative process, and an emergent content analysis was performed. Five main themes were identified: (a) engaging in research to contribute to personal or greater good, (b) hierarchy of trust, (c) the importance of disclosure and transparency, (d) practical barriers to research engagement, and (e) fear of research procedures. Community members view research engagement as a collaborative process whereby community members and researchers are involved in all stages of the investigation. Focusing on research engagement, and not merely participation, may enhance community knowledge of the research process and advance scientific knowledge.
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Investigación Biomédica , Sujetos de Investigación/psicología , Adolescente , Adulto , Anciano , Anciano de 80 o más Años , Revelación , Miedo , Humanos , Persona de Mediana Edad , Investigación Cualitativa , Factores Socioeconómicos , Confianza , Adulto JovenRESUMEN
OBJECTIVE: Symptomatic chronic subdural hematoma (CSDH) will become an increasingly common presentation in neurosurgical practice as the population ages, but quality evidence is still lacking to guide the optimal management for these patients. The British Neurosurgical Trainee Research Collaborative (BNTRC) was established by neurosurgical trainees in 2012 to improve research by combining the efforts of trainees in each of the United Kingdom (UK) and Ireland's neurosurgical units (NSUs). The authors present the first study by the BNTRC that describes current management and outcomes for patients with CSDH throughout the UK and Ireland. This provides a resource both for current clinical practice and future clinical research on CSDH. METHODS: Data on management and outcomes for patients with CSDH referred to UK and Ireland NSUs were collected prospectively over an 8-month period and audited against criteria predefined from the literature: NSU mortality < 5%, NSU morbidity < 10%, symptomatic recurrence within 60 days requiring repeat surgery < 20%, and unfavorable functional status (modified Rankin Scale score of 4-6) at NSU discharge < 30%. RESULTS: Data from 1205 patients in 26 NSUs were collected. Bur-hole craniostomy was the most common procedure (89%), and symptomatic recurrence requiring repeat surgery within 60 days was observed in 9% of patients. Criteria on mortality (2%), rate of recurrence (9%), and unfavorable functional outcome (22%) were met, but morbidity was greater than expected (14%). Multivariate analysis demonstrated that failure to insert a drain intraoperatively independently predicted recurrence and unfavorable functional outcome (p = 0.011 and p = 0.048, respectively). Increasing patient age (p < 0.00001), postoperative bed rest (p = 0.019), and use of a single bur hole (p = 0.020) independently predicted unfavorable functional outcomes, but prescription of high-flow oxygen or preoperative use of antiplatelet medications did not. CONCLUSIONS: This is the largest prospective CSDH study and helps establish national standards. It has confirmed in a real-world setting the effectiveness of placing a subdural drain. This study identified a number of modifiable prognostic factors but questions the necessity of some common aspects of CSDH management, such as enforced postoperative bed rest. Future studies should seek to establish how practitioners can optimize perioperative care of patients with CSDH to reduce morbidity as well as minimize CSDH recurrence. The BNTRC is unique worldwide, conducting multicenter trainee-led research and audits. This study demonstrates that collaborative research networks are powerful tools to interrogate clinical research questions.
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Hematoma Subdural Crónico/cirugía , Adulto , Anciano , Anciano de 80 o más Años , Estudios de Cohortes , Femenino , Humanos , Masculino , Persona de Mediana Edad , Estudios Prospectivos , Recurrencia , Resultado del Tratamiento , Reino Unido , Adulto JovenRESUMEN
OBJECTIVES: To analyse the research activity and publication output of surgical trainee research collaboratives in the UK. SETTING: Surgical trainee research collaboratives in the UK. PARTICIPANTS: A total of 24 collaboratives were included in this study from 33 identified organisations. We excluded one group that focused purely on systematic review of the literature and eight groups for which we could not identify suitable data sources (website or trainee committee contact). PRIMARY AND SECONDARY OUTCOME: Primary data-points were identified for each collaborative including surgical subspeciality, numbers and types of projects. For published articles, secondary outcomes including study population size, journal impact factor, number of citations and evidence level were collected. RESULTS: A total of 24 collaboratives met our inclusion criteria with a portfolio of 80 projects. The project types included audit (46%), randomised clinical trial (16%), surveys (16%), cohort studies (10%), systematic reviews (2.5%) and other or unidentifiable (9.5%). A total of 35 publications were identified of which just over half (54%) were original research articles. The median size of studied population was 540 patients with a range from 108 to 3138. The published works provided a varied compilation of evidence levels ranging from 1b (individual RCT) to 5 (expert opinion) with a median level of 2b (individual cohort study). The West Midlands Research Collaborative had the highest number of publications (13), citations (130) and h-index (5). CONCLUSIONS: The experience of UK-based trainee research collaboratives provides useful insights for trainees and policymakers in global healthcare systems on the value and feasibility of trainee-driven high quality surgical research.
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Conducta Cooperativa , Publicaciones/estadística & datos numéricos , Investigación/estadística & datos numéricos , Procedimientos Quirúrgicos Operativos/educación , Humanos , Reino UnidoRESUMEN
Although the concept of empowerment is a key principle of community-based participatory research (CBPR), little is known about how academic and community partners perceive empowerment during a CBPR process. CBPR partners' perceptions of the process were explored using semi-structured interviews with both partners in 10 CBPR partnerships that had completed projects addressing social determinants of health. Dyadic interview analysis was employed to understand dynamics within and across partnerships. Five partnerships showed no differences in perceptions of empowerment. Four had minor discrepancies. Only one partnership varied considerably between partners, where the community partner perceived less empowerment regarding determining the study topic and overall control, influence, and respect throughout the process. This article discusses implications of findings for CBPR. Evaluating partners' perceived empowerment throughout a CBPR project might reveal areas to adjust, as not all projects with quantifiably successful outcomes involve processes that are successful in terms of empowerment.
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Investigación Participativa Basada en la Comunidad/métodos , Relaciones Comunidad-Institución , Conducta Cooperativa , Poder Psicológico , Percepción Social , Investigación Participativa Basada en la Comunidad/organización & administración , Humanos , Relaciones Interpersonales , Relaciones Interprofesionales , Entrevistas como Asunto , Estados Unidos , UniversidadesRESUMEN
Patient safety research has to date offered few opportunities for patients and families to be actively involved in the research process. This article describes our collaboration with patients and families in two separate studies, involving end-of-life care and infection control in acute care. We used the collaborative methodology of video-reflexive ethnography, which has been primarily used with clinicians, to involve patients and families as active participants and collaborators in our research. The purpose of this article is to share our experiences and findings that iterative researcher reflexivity in the field was critical to the progress and success of each study. We present and analyze the complexities of reflexivity-in-the-field through a framework of multilayered reflexivity. We share our lessons here for other researchers seeking to actively involve patients and families in patient safety research using collaborative visual methods.
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Investigación sobre Servicios de Salud , Participación del Paciente , Seguridad del Paciente , Grabación en Video , Antropología Cultural , Cuidados Críticos/métodos , Cuidados Críticos/normas , Infección Hospitalaria/prevención & control , Familia , Humanos , Cuidado Terminal/métodos , Cuidado Terminal/normasRESUMEN
Inpatient mental health services in the United Kingdom are currently dissatisfactory for service-users and staff. For young people with psychosis, being hospitalized is often distressing, and can lead to disengagement with mental health services. This article describes how we took three qualitative research studies about hospitalization in early psychosis (exploring the perspectives of service-users, parents, and staff) and translated them into service improvements developed in collaboration with a range of stakeholders, including service-users, carers, community and inpatient staff, and management. We used an adapted form of experience-based co-design (EBCD), a participatory action-research method for collaboratively improving health care services. The use of EBCD is still relatively novel in mental health settings, and we discuss how we adapted the methodology, and some of the implications of using EBCD with vulnerable populations in complex services. We reflect on both the disappointments and successes and give some recommendations for future research and methodological development.
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Actitud Frente a la Salud , Investigación sobre Servicios de Salud/normas , Pacientes Internos/psicología , Servicios de Salud Mental/normas , Personal de Enfermería en Hospital/psicología , Padres/psicología , Trastornos Psicóticos/psicología , Adolescente , Actitud del Personal de Salud , Investigación sobre Servicios de Salud/métodos , Humanos , Servicios de Salud Mental/organización & administración , Relaciones Profesional-Familia , Relaciones Profesional-Paciente , Trastornos Psicóticos/terapia , Investigación Cualitativa , Medicina Estatal , Reino Unido , Adulto JovenRESUMEN
In this article, we present the findings of a participatory realistic evaluation of a 5-year program of health care research intended to promote the translation of knowledge into routine clinical practice. The program was one of the nine pilot Collaborations for Leadership in Applied Health Research and Care funded by the English National Institute for Health Research between 2008 and 2013. Our aim was to delineate the mechanisms by which, and circumstances in which, some projects carried out under the program achieved success in knowledge translation while others were frustrated. Using qualitative methods, we examined how closer collaboration between academics and clinicians worked in four purposefully chosen case studies. In a synthesis of the findings, we produced a "black box" model of how knowledge translation was enabled by the activation of nine mechanisms. These are summarized in the form of five simple rules for promoting knowledge translation through collaborations based on principles of coproduction.
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Investigación Participativa Basada en la Comunidad/organización & administración , Investigación sobre Servicios de Salud/organización & administración , Investigación Biomédica Traslacional/organización & administración , Investigación Participativa Basada en la Comunidad/métodos , Difusión de Innovaciones , Investigación sobre Servicios de Salud/métodos , Investigación sobre Servicios de Salud/normas , Humanos , Estudios de Casos Organizacionales , Proyectos Piloto , Evaluación de Programas y Proyectos de Salud/métodos , Investigación Cualitativa , Investigación Biomédica Traslacional/métodos , Investigación Biomédica Traslacional/normasRESUMEN
BACKGROUND: Seniors with chronic diseases are often called on to self-manage their conditions. Mobile health (mHealth) tools may be a useful strategy to help seniors access health information at the point of decision-making, receive real-time feedback and coaching, and monitor health conditions. However, developing successful mHealth interventions for seniors presents many challenges. One of the key challenges is to ensure the scope of possible research questions includes the diverse views of seniors, experts and the stakeholder groups who support seniors as they manage chronic disease. OBJECTIVE: Our primary objective was to present a case-study of a collaborative research approach to the development of an interdisciplinary research agenda. Our secondary objectives were to report on the results of a nominal group technique (NGT) approach used generate research questions and to assess the success of including non-academic researchers to enrich the scope, priority, and total number of possible research questions. METHODS: We invited researchers and stakeholders to participate in a full day meeting that included rapid-style presentations by researchers, health care professionals, technology experts, patients and community groups followed by group discussions. An NGT was used to establish group consensus on the following question: In your opinion, what research needs to be done to better understand the effectiveness, usability and design of mobile health apps and devices for older adults? RESULTS: Overall, the collaborative approach was a very successful strategy to bring together a diverse group of participants with the same end goal. The 32 participants generated 119 items in total. The top three research questions that emerged from the NGT were related to adoption, the need for high quality tools and the digital divide. Strong sub-themes included privacy and security, engagement and design. The NGT also helped us include the perspectives information from non-academic researchers that would not have been captured if the process had been limited to the research team. CONCLUSIONS: Developing ways for patients and other stakeholders to have a voice when it comes to developing patient awareness as related to mHealth may guide future research into engagement, ownership, usability and design. It is our intention that our paper be used and adapted by other researchers to engage small or vulnerable populations often excluded from mHealth research and design.
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Storytelling, in its various forms, has often been described as a practice with great emancipatory potential. In turn, Indigenous knowledge shows great promise in guiding a participatory action research (PAR) methodology. Yet these two approaches are rarely discussed in relation to one another, nor, has much been written in terms of how these two approaches may work synergistically toward a decolonizing research approach. In this article, I report on a community-driven knowledge translation activity, the Peoples' International Health Tribunal, as an exemplar of how narrative and PAR approaches, guided by local Indigenous knowledge, have great potential to build methodologically and ethically robust research processes. Implications for building globally relevant research alliances and scholarship are further discussed, particularly in relation to working with Indigenous communities.
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There is an urgent need to eliminate mental health disparities experienced by American Indians and Alaska Natives (AI/ANs). Service providers and researchers often address these disparities by focusing on low rates of participation in Western mental health services. In part, this reflects limited understandings of the sociopolitical and historical context of AI/AN mental health problems. Furthermore, this emphasis fails to recognize the importance of emic understandings of locally resonant coping strategies, healing, and treatment. In this article, we describe (a) a study designed to address these gaps, (b) findings related to the importance of land and place, and (c) a community-university collaboration to translate these findings into meaningful change within one Diné community. Connections to the land were an important cultural strength on which to build efforts to promote mental health. Thus, effective treatment might involve more in-depth understanding of cultural processes through which healing occurs and well-being is maintained.