scholarly journals Patient participation in ERS guidelines and research projects: the EMBARC experience

Breathe ◽  
2017 ◽  
Vol 13 (3) ◽  
pp. 194-207 ◽  
Author(s):  
James D. Chalmers ◽  
Alan Timothy ◽  
Eva Polverino ◽  
Marta Almagro ◽  
Thomas Ruddy ◽  
...  
Keyword(s):  
Clinical Research ◽  
Patient Engagement ◽  
Clinical Guidelines ◽  
Patient Involvement ◽  
Research Collaboration ◽  
Clinical Care ◽  
List Type ◽  
Research Projects ◽  
Educational Activities ◽  
Specific Patient

The European Multicentre Bronchiectasis Audit and Research Collaboration (EMBARC) is a European Respiratory Society (ERS) Clinical Research Collaboration dedicated to improving research and clinical care for people with bronchiectasis. EMBARC has created a European Bronchiectasis Registry, funded by the ERS and by the European Union (EU) Innovative Medicines Initiative Programme.From the outset, EMBARC had the ambition to be a patient-focussed project. In contrast to many respiratory diseases, however, there are no specific patient charities or European patient organisations for patients with bronchiectasis and no existing infrastructure for patient engagement. This article describes the experience of EMBARC and the European Lung Foundation in establishing a patient advisory group and then engaging this group in European guidelines, an international registry and a series of research studies.Patient involvement in research, clinical guidelines and educational activities is increasingly advocated and increasingly important. Genuine patient engagement can achieve a number of goals that are critical to the success of an EU project, including focussing activities on patient priorities, allowing patients to direct the clinical and research agenda, and dissemination of guidelines and research findings to patients and the general public. Here, we review lessons learned and provide guidance for future ERS task forces, EU-funded projects or clinical research collaborations that are considering patient involvement.Educational aimsTo understand the different ways in which patients can contribute to clinical guidelines, research projects and educational activities.To understand the barriers and potential solutions to these barriers from a physician’s perspective, in order to ensure meaningful patient involvement in clinical projects.To understand the barriers and potential solutions from a patient’s perspective, in order to meaningfully involve patients in clinical projects.

scholarly journals The European Multicentre Bronchiectasis Audit and Research Collaboration (EMBARC): experiences from a successful ERS Clinical Research Collaboration

Breathe ◽  
2017 ◽  
Vol 13 (3) ◽  
pp. 180-192 ◽  
Author(s):  
James D. Chalmers ◽  
Megan Crichton ◽  
Pieter C. Goeminne ◽  
Michael R. Loebinger ◽  
Charles Haworth ◽  
...  
Keyword(s):  
Clinical Trials ◽  
Clinical Research ◽  
Research Collaboration ◽  
Clinical Care ◽  
Research Priorities ◽  
Chronic Obstructive ◽  
List Type ◽  
European Respiratory Society ◽  
Obstructive Pulmonary Disease ◽  
Research Education

In contrast to airway diseases like chronic obstructive pulmonary disease or asthma, and rare diseases such as cystic fibrosis, there has been little research and few clinical trials in bronchiectasis. Guidelines are primarily based on expert opinion and treatment is challenging because of the heterogeneous nature of the disease.In an effort to address decades of underinvestment in bronchiectasis research, education and clinical care, the European Multicentre Bronchiectasis Audit and Research Collaboration (EMBARC) was established in 2012 as a collaborative pan-European network to bring together bronchiectasis researchers. The European Respiratory Society officially funded EMBARC in 2013 as a Clinical Research Collaboration, providing support and infrastructure to allow the project to grow.EMBARC has now established an international bronchiectasis registry that is active in more than 30 countries both within and outside Europe. Beyond the registry, the network participates in designing and facilitating clinical trials, has set international research priorities, promotes education and has participated in producing the first international bronchiectasis guidelines. This manuscript article the development, structure and achievements of EMBARC from 2012 to 2017.Educational aimsTo understand the role of Clinical Research Collaborations as the major way in which the European Respiratory Society can stimulate clinical research in different disease areasTo understand some of the key features of successful disease registriesTo review key epidemiological, clinical and translational studies of bronchiectasis contributed by the European Multicentre Bronchiectasis Audit and Research Collaboration (EMBARC) project in the past 5 yearsTo understand the key research priorities identified by EMBARC for the next 5 years

scholarly journals Patient Experience in Home Respiratory Therapies: Where We Are and Where to Go

2019 ◽  
Vol 8 (4) ◽  
pp. 555 ◽  
Author(s):  
Cátia Caneiras ◽  
Cristina Jácome ◽  
Sagrario Mayoralas-Alises ◽  
José Ramon Calvo ◽  
João Almeida Fonseca ◽  
...  
Keyword(s):  
Clinical Research ◽  
Patient Experience ◽  
Clinical Care ◽  
Research Priorities ◽  
Specific Patient ◽  
Quality Healthcare ◽  
Body Of Knowledge ◽  
Number Of Patients ◽  
Patient Reported ◽  
System Sustainability

The increasing number of patients receiving home respiratory therapy (HRT) is imposing a major impact on routine clinical care and healthcare system sustainability. The current challenge is to continue to guarantee access to HRT while maintaining the quality of care. The patient experience is a cornerstone of high-quality healthcare and an emergent area of clinical research. This review approaches the assessment of the patient experience in the context of HRT while highlighting the European contribution to this body of knowledge. This review demonstrates that research in this area is still limited, with no example of a prescription model that incorporates the patient experience as an outcome and no specific patient-reported experience measures (PREMs) available. This work also shows that Europe is leading the research on HRT provision. The development of a specific PREM and the integration of PREMs into the assessment of prescription models should be clinical research priorities in the next several years.

scholarly journals The use of a participatory patient engagement research project to meaningfully engage those with lived experience of diabetes and homelessness

2021 ◽  
Author(s):  
David J.T. Campbell ◽  
Rachel B. Campbell ◽  
Anna DiGiandomenico ◽  
Matthew Larsen ◽  
Marleane A. Davidson ◽  
...  
Keyword(s):  
Knowledge Translation ◽  
Participatory Research ◽  
Patient Engagement ◽  
List Type ◽  
Research Projects ◽  
Community Members ◽  
Disadvantaged Populations ◽  
Socially Disadvantaged ◽  
Academic Researchers ◽  
Group Members

AbstractIntroductionParticipatory research is a study method that engages patient partners in research programs from study design through to completion. It has seldom been used in diabetes health services research. Our objectives were to describe the process and challenges of conducting a patient-engagement project and to highlight the experiences of patient participants and academic researchers.Research Design & MethodsWe recruited PWLEH and diabetes in Toronto, Canada to be patient partners. Group members were asked to commit to attending biweekly meetings. We undertook two major research projects: Concept mapping to choose a research focus; and photovoice to explore accessing healthy food while homeless. We used a convergent mixed methods design to evaluate their experience.ResultsA diverse group of 8 PWLEH had an average attendance of 82% over 21 meetings – despite this success, we encountered a number of challenges to conducting this research. Group members reported that participation improved their ability to be self-advocates in their diabetes care and provided them with tangible skills and social benefits. Group members stated that they valued being involved in all aspects of the research, in particular knowledge translation activities, including advocating for nutritious food at shelters; presenting to stakeholders; and meeting with policy makers.ConclusionsThe use of participatory patient engagement research methods enables academic researchers to support community members in pursuing research that is pertinent to them and which has a positive impact. In our study, group members contributed in meaningful ways and also valued the experience.What is already known about this subject?Patient oriented research is important to public health research as it helps with the development of relevant interventions and knowledge translation.Participatory research is a form of research that maximally involves patients in all phases of the research.Participatory research has rarely been used in research on diabetes and diabetes-related interventions.What are the new findings?Patient engagement is important for studies involving socially disadvantaged populations with diabetes.Community members involved in research contribute substantially to research projects but also find the experience to be enriching and valuable.How might these results change the focus of research or clinical practice?Those who conduct research with and develop programs to provide diabetes care, especially to socially disadvantaged populations, should involve community members through all phases of the process to ensure the intervention is maximally useful for patients.

scholarly journals Multidisciplinary collaboration among young specialists: results of an international survey by the emerging EULAR network and other young organisations

RMD Open ◽  
2020 ◽  
Vol 6 (2) ◽  
pp. e001398 ◽  
Author(s):  
Aurélie Najm ◽  
Marie Kostine ◽  
John D Pauling ◽  
Ana Carina Ferreira ◽  
Kate Stevens ◽  
...  
Keyword(s):  
Clinical Research ◽  
Online Survey ◽  
Research Collaboration ◽  
Clinical Care ◽  
Basic Research ◽  
Multidisciplinary Collaboration ◽  
Collective Work ◽  
Research Collaborations ◽  
Complex Patients ◽  
Multidisciplinary Meetings

BackgroundMultidisciplinary collaboration is defined as a collective work involving multiple disciplines and is common in clinical care and research. Our aim was to describe current clinical and research collaboration among young specialists and to identify unmet needs in this area.MethodsAn online survey was disseminated by email and social media to members of the EMerging EUlar NETwork, the Young Nephrologists’ Platform, the Paediatric Rheumatology European Society Emerging Rheumatologists and Researchers and the European Academy of Allergy and Clinical Immunology Junior Members.ResultsOf 303 respondents from 36 countries, 61% were female, 21% were aged below 30 years and 67% were aged 31–40 years. Young rheumatologists were the most represented (39%), followed by young nephrologists (24%), young paediatricians (20%), young allergologists (11%) then young internists (3%) and 3% other specialities. Collaborations were reported frequently by phone and email, also by various combined clinics while common local multidisciplinary meetings were uncommon. 96% would like to develop clinical research collaborations and 69% basic research collaborations. The majority of young specialists would be interested in online (84%) and/or 1–2 days (85%) common courses including case discussion (81%) and training workshops (85%), as well as webinars recorded with several specialists on a specific disease (96%).ConclusionsThis collaborative initiative highlighted wishes from young specialists for developing (1) regular local multidisciplinary meetings to discuss complex patients, (2) clinical research collaboration with combined grants and (3) multidisciplinary online projects such as common courses, webinars and apps.

scholarly journals Patient involvement in clinical research: a qualitative evaluation of impact

Trials ◽  
2013 ◽  
Vol 14 (Suppl 1) ◽  
pp. O36
Author(s):  
Rachael Gooberman-Hill ◽  
Amanda Burston ◽  
Erik Lenguerrand ◽  
Emma Clark ◽  
Emma Johnson
Keyword(s):  
Clinical Research ◽  
Patient Involvement ◽  
Qualitative Evaluation

OHSU Employees’ Opinions of Receipt of Clinical Care and Participation in Clinical Research at Place of Employment

2021 ◽  
Author(s):  
Morinne Osborne, B.S. ◽  
Emily Boniface, M.P.H. ◽  
Marcella Messerle Forbes, N.P. ◽  
Jeffrey Jensen
Keyword(s):  
Clinical Research ◽  
Clinical Care

Residual chemosensitivity to ventilatory challenges in genotyped congenital central hypoventilation syndrome

2014 ◽  
Vol 116 (4) ◽  
pp. 439-450 ◽  
Author(s):  
Michael S. Carroll ◽  
Pallavi P. Patwari ◽  
Anna S. Kenny ◽  
Cindy D. Brogadir ◽  
Tracey M. Stewart ◽  
...  
Keyword(s):  
Young Adults ◽  
Clinical Care ◽  
Neurodevelopmental Disorder ◽  
Control Group ◽  
Congenital Central Hypoventilation Syndrome ◽  
Specific Patient ◽  
Cerebrovascular Function ◽  
Central Hypoventilation ◽  
Hypoventilation Syndrome ◽  
Chemosensory Function

Congenital central hypoventilation syndrome (CCHS) is a neurodevelopmental disorder characterized by life-threatening hypoventilation, possibly resulting from disruption of central chemosensory integration. However, animal models suggest the possibility of residual chemosensory function in the human disease. Cardioventilatory function in a large cohort with CCHS and verified paired-like homeobox 2B ( PHOX2B) mutations was assessed to determine the extent and genotype dependence of any residual chemosensory function in these patients. As part of inpatient clinical care and evaluation, 64 distinct studies from 32 infants, children, and young adults with the disorder were evaluated for physiological response to three different inspired steady-state gas exposures of 3 min each: hyperoxia [100% oxygen (O2)]; hyperoxic hypercapnia [95% O2 and 5% carbon dioxide (CO2)]; and hypoxic hypercapnia [14% O2 and 7% CO2 balanced with nitrogen (N2)]. These were followed by a hypoxia challenge consisting of five or seven breaths of N2 (100% N2). In addition, a control group of 15 young adults was exposed to all but the hypoxic challenge. Comprehensive monitoring was used to derive breath-to-breath and beat-to-beat measures of ventilatory, cardiovascular, and cerebrovascular function. On average, patients showed a residual awake ventilatory response to chemosensory challenge, independent of the specific patient PHOX2B genotype. Graded dysfunction in cardiovascular regulation was found to associate with genotype, suggesting differential effects on different autonomic subsystems. In addition, differences between cases and controls in the cerebrovascular response to chemosensory challenge may indicate alterations in cerebral autoregulation. Thus residual cardiorespiratory responses suggest partial preservation of central nervous system networks that could provide a fulcrum for potential pharmacological interventions.

scholarly journals The Treatment of Brain AVMs Study (TOBAS): an all-inclusive framework to integrate clinical care and research

2018 ◽  
Vol 128 (6) ◽  
pp. 1823-1829 ◽  
Author(s):  
Elsa Magro ◽  
Jean-Christophe Gentric ◽  
André Lima Batista ◽  
Marc Kotowski ◽  
Chiraz Chaalala ◽  
...  
Keyword(s):  
Clinical Research ◽  
Clinical Judgment ◽  
Clinical Care ◽  
Clinical Trial Registration ◽  
Treatment Allocation ◽  
Patient Allocation ◽  
Test Study ◽  
Brain Avms ◽  
Management Groups

OBJECTIVEThe management of brain arteriovenous malformations (bAVMs) remains controversial. The Treatment of Brain AVMs Study (TOBAS) was designed to manage patients with bAVMs within a clinical research framework. The objective of this study was to study trial feasibility, recruitment rates, patient allocation to the various management groups, and compliance with treatment allocation.METHODSTOBAS combines two randomized care trials (RCTs) and a registry. Designed to be all-inclusive, the study offers randomized allocation of interventional versus conservative management to patients eligible for both options (first RCT), a second RCT testing the role of preembolization as an adjunct to surgery or radiotherapy, and a registry of patients managed using clinical judgment alone. The primary outcome of the first RCT is death from any cause or disabling stroke (modified Rankin Scale score > 2) at 10 years. A pilot phase was initiated at one center to test study feasibility, record the number and characteristics of patients enrolled in the RCTs, and estimate the frequency of crossovers.RESULTSAll patients discussed at the multidisciplinary bAVM committee between June 2014 and June 2016 (n = 107) were recruited into the study; 46 in the randomized trials (23 in the first RCT with 21 unruptured bAVMs, 40 in the second RCT with 17 unruptured bAVMs, and 17 in both RCTs), and 61 patients in the registry. Three patients crossed over from surgery to observation (first RCT).CONCLUSIONSClinical research was successfully integrated with normal practice using TOBAS. Recruitment rates in a single center are encouraging. Whether the trial will provide meaningful results depends on the recruitment of a sufficient number of participating centers.Clinical trial registration no.: NCT02098252 (clinicaltrials.gov)

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