james lind alliance
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physioscience ◽  
2022 ◽  
Author(s):  
Tobias Braun ◽  
Carolin Bahns ◽  
Bernhard Elsner ◽  
Christian Kopkow

Zusammenfassung Hintergrund Forschungsprioritäten können dazu beitragen, Evidenz in den Bereichen zu entwickeln, die für Patient*innen und Kliniker*innen am wichtigsten sind. Forschungsprioritäten werden jedoch in der biomedizinischen Forschung nur unzureichend berücksichtigt. Ziel Beschreibung der Berücksichtigung von Forschungsprioritäten in der physiotherapeutischen Forschung in Deutschland. Methode Analyse von physiotherapeutischen Berichten aus Deutschland, die zwischen 2011 und 2020 in der Fachzeitschrift physioscience publiziert wurden. Für jeden eingeschlossenen Bericht wurde die primäre Forschungsfrage und/oder der Hauptgegenstandsbereich identifiziert und, falls möglich, einem spezifischen Gesundheitszustand zugeordnet. Danach wurde für jeden Bericht geprüft, ob eine gesundheitszustandsspezifische Forschungspriorität (von der James Lind Alliance oder aus wissenschaftlichen Datenbanken) bzw. eine der Top 26 der physiotherapiespezifischen Forschungsprioritäten des britischen Berufsverbandes „The Chartered Society of Physiotherapy (CSP)“ aus 2018 adressiert wurde. Die Datenanalyse erfolgte deskriptiv. Ergebnisse Es konnten 78 Berichte in die Analyse eingeschlossen werden. Die häufigsten Studientypen waren Übersichtsarbeiten (17/78, 22 %), Beobachtungsstudien (16/78, 21 %) und Umfragen (13/78, 17 %). Für die Analyse der gesundheitszustandsspezifischen Forschungsprioritäten konnten 51 Berichte berücksichtigt werden. In 51 % dieser Berichte (26/51) wurde eine der 10 wichtigsten Forschungsprioritäten des jeweiligen Themengebiets adressiert. In den übrigen Berichten wurde keine gesundheitszustandsspezifische Forschungspriorität berücksichtigt (13/51, 25 %) oder die Priorität gehörte nicht zu den Top Ten (12/51, 24 %).Für die Analyse der physiotherapeutischen Forschungsprioritäten wurden alle 78 Berichte berücksichtigt. In 21 % dieser Berichte (16/78) wurde eine Top-Ten-Priorität adressiert. In den übrigen Berichten wurde eine weniger wichtige Priorität adressiert (Listenplatz 11–26; 25/78, 32 %) oder das Forschungsthema des Berichts gehörte nicht zu den Top 26 (37/78, 47 %). Schlussfolgerung Die vorliegende Studie liefert erste Hinweise darauf, dass Forschungsprioritäten in der physiotherapeutischen Forschung in Deutschland nur unzureichend berücksichtigt werden. Ein erheblicher Teil der Forschung scheint somit an den Bedürfnissen von Patient*innen und Kliniker*innen vorbeizugehen. Die Berücksichtigung existierender Forschungsprioritäten und die Entwicklung nationaler Forschungsprioritäten für die Physiotherapie in Deutschland könnten dazu beitragen, den Nutzen der physiotherapeutischen Forschung für die öffentliche Gesundheit zu vergrößern.


F1000Research ◽  
2021 ◽  
Vol 10 ◽  
pp. 1221
Author(s):  
Brynhildur Axelsdóttir ◽  
Lise Mette Eidet ◽  
Ragnhild Thoner ◽  
Sølvi Biedilæ ◽  
Ingrid Borren ◽  
...  

Background: A starting point for evaluating the effectiveness of treatments should be to identify evidence gaps. Furthermore, such evaluations should consider the perspectives of patients, clinicians and carers to ensure relevance and potentially influence future research initiatives. Methods: Our approach, inspired by the James Lind Alliance methods, involved three steps. First, we performed a document analysis by identifying interventions and outcomes in two recently published overviews of systematic reviews, which summarised the effects of interventions for anxiety and depression in children and adolescents. Second, we surveyed children and adolescents with personal experiences of depression or anxiety as well as clinicians, and asked them to suggest treatments and outcomes associated with uncertainty. Finally, we facilitated a consensus process where clinicians and youth mental health patient representatives were invited to prioritise research uncertainties in separate consensus processes. Results: The survey included 674 respondents who reported a total of 1267 uncertainties. Independent coding by four investigators revealed 134 suggestions for treatments of anxiety, 90 suggestions for treatments of depression, 84 for outcomes of interventions for anxiety and 71 suggestions for outcomes of interventions for depression. Two separate priority setting workshops with eight clinicians and ten youth resulted in four independent top ten priority lists. Conclusion: Top ten lists of treatments and outcome domains of anxiety and depression in children and adolescents was identified by youth and clinicians. The results may influence the research agenda, and ultimately benefit patients.


BMJ Open ◽  
2021 ◽  
Vol 11 (12) ◽  
pp. e047919
Author(s):  
Meredith Lee Brockway ◽  
Elizabeth Keys ◽  
Katherine Stuart Bright ◽  
Carla Ginn ◽  
Leslie Conlon ◽  
...  

ObjectiveThe study objective was to identify the top 10 research priorities for expectant parents and caregivers of children up to age 24 months.DesignA priority setting partnership using a modified James Lind Alliance approach was implemented. First, a core steering committee was formed, consisting of 17 parents, clinicians and community agency representatives. Second, through in-person collaboration with steering committee members, we developed and distributed a survey to identify research priorities across 12 topics. In total, 596 participants consented and 480 completed the survey. Survey responses were grouped and themed into codes during a consensus-building workshop with steering committee members (n=18). Research and practice experts were consulted to provide feedback on which themes had already been researched. An in-person (n=21) workshop was used to establish the top 34 priorities, which were circulated to the broader steering committee (n=25) via an online survey. Finally, the core steering committee members (n=18) met to determine and rank a top 10 (plus 1) list of research priorities.SettingThis study was conducted in Alberta, Canada.ParticipantsExpectant parents and caregivers of children up to age 24 months.ResultsSurvey results provided 3232 responses, with 202 unique priorities. After expert feedback and steering committee consensus, a list of 34 priorities was moved forward for final consideration. The final top 10 (plus 1) research priorities included three priorities on mental health/relationships, two priorities on each of access to information, immunity and child development, and one priority on each of sleep, pregnancy/labour and feeding. Selecting 11 instead of 10 priorities was based on steering committee consensus.ConclusionsThe findings will direct future maternal–child research, ensuring it is rooted in parent-identified priorities that represent contemporary needs. To provide meaningful outcomes, research in these priority areas must consider diverse socioeconomic backgrounds and experiences.


2021 ◽  
Vol 4 ◽  
pp. 80
Author(s):  
Claire Beecher ◽  
Elaine Toomey ◽  
Beccy Maeso ◽  
Caroline Whiting ◽  
Derek C. Stewart ◽  
...  

Background: The value of rapid reviews in informing health care decisions is more evident since the onset of the coronavirus disease 2019 (COVID-19) pandemic. While systematic reviews can be completed rapidly, rapid reviews are usually a type of evidence synthesis in which components of the systematic review process may be simplified or omitted to produce information more efficiently within constraints of time, expertise, funding or any combination thereof. There is an absence of high-quality evidence underpinning some decisions about how we plan, do and share rapid reviews. We will conduct a modified James Lind Alliance Priority Setting Partnership to determine the top 10 unanswered research questions about how we plan, do and share rapid reviews in collaboration with patients, public, reviewers, researchers, clinicians, policymakers and funders. Methods: An international steering group consisting of key stakeholder perspectives (patients, the public, reviewers, researchers, clinicians, policymakers and funders) will facilitate broad reach, recruitment and participation across stakeholder groups. An initial online survey will identify stakeholders’ perceptions of research uncertainties about how we plan, do and share rapid reviews. Responses will be categorised to generate a long list of questions. The list will be checked against systematic reviews published within the past three years to identify if the question is unanswered. A second online stakeholder survey will rank the long list in order of priority. Finally, a virtual consensus workshop of key stakeholders will agree on the top 10 unanswered questions. Discussion: Research prioritisation is an important means for minimising research waste and ensuring that research resources are targeted towards answering the most important questions. Identifying the top 10 rapid review methodology research priorities will help target research to improve how we plan, do and share rapid reviews and ultimately enhance the use of high-quality synthesised evidence to inform health care policy and practice.


Author(s):  
Samantha Fowler ◽  
Lauren McLaughlin ◽  
Sarah Bridges ◽  
Marc Robichaud ◽  
Barbara Ridgway ◽  
...  

Blood ◽  
2021 ◽  
Vol 138 (Supplement 1) ◽  
pp. 4984-4984
Author(s):  
Anthony Reiman ◽  
Samantha Fowler ◽  
Lauren McLaughlin ◽  
Sarah Bridges ◽  
Marc Robichaud ◽  
...  

Abstract Multiple myeloma, also referred to simply as myeloma, is an incurable cancer of the plasma cells. Every year, more than 3,000 Canadians are diagnosed with myeloma and more than 1,000 Canadians die from this disease. As a result of recent advances in treatment, people are living longer with myeloma. However, as the disease has yet no cure, further research is needed to continuously improve the diagnosis, treatment, and management of myeloma, and to provide a better quality of life for those living with this disease. The first project of its kind for myeloma, the Canadian Myeloma Priority Setting Partnership (PSP) was established in 2019 to identify research priorities shared by people with myeloma, caregivers and healthcare providers. The Canadian Myeloma PSP followed the rigorous methodology developed by the James Lind Alliance (JLA), a UK-based, non-profit initiative that seeks to reduce the gap that exists between funded research and the needs of the community. The project was generously funded and supported by Myeloma Canada, a national charitable organization exclusively devoted to improving the lives of Canadians impacted by myeloma. Following the JLA guidelines, we convened a national steering committee whose members consisted of people with myeloma, caregivers and healthcare providers; together, they guided the iterative priority setting process. The first phase of the process involved the development of a survey used to elicit unanswered research questions, also known as "uncertainties," relating to four wide-ranging topics: diagnosis, treatment, management, and living well with myeloma. The survey generated 3,042 uncertainties from 594 participants from across Canada. In the second phase of the process, the uncertainties were processed and verified according to the JLA guidelines to produce 76 indicative questions. These questions were subsequently reviewed to determine whether they fell within the project scope, and then compared against all available systematic reviews and clinical practice guidelines on myeloma published within the previous ten years (2010-2020). This process yielded 45 indicative questions that were both within the scope of the project and unanswered by previous research. The third phase involved an interim prioritization survey which asked participants to select and rank their top 10 questions for future myeloma research from among the list of 45 indicative questions. A total of 651 participants from across the country completed the second survey and the results were used to create a shortlist of 18 questions. The shortlist was then submitted for discussion at a consensus-building or prioritization workshop. The prioritization workshop, the final phase of the PSP process, was held in April 2021. The online event was attended by 23 participants (people living with myeloma, caregivers and healthcare providers), while four JLA Advisors facilitated the discussions using nominal group techniques. This event produced a ranked list of the top 10 research priorities for future research on myeloma (see Table 1).These priorities will be disseminated as widely as possible among researchers, clinicians, research funders and the broader myeloma community. The goal is not only to inform on, but also to solicit funding for future research directions that are meaningful to those directly affected by the disease. Figure 1 Figure 1. Disclosures Reiman: Myeloma Canada, Canadian Institutes of Health Research, New Brunswick Health Research Foundation, Canadian Cancer Society, Terry Fox Research Institute, AstraZeneca, Roche, Pfizer, Amgen, BristolMyersSquibb,: Research Funding; Myeloma Canada: Membership on an entity's Board of Directors or advisory committees; Compositions and Methods for Inhibiting Blood Cancer Cell Growth. Canadian Patent Pending 176000 (2017-10-20) Peptides for the Treatment of Resorptive Bone Disease. Murugesan A and Reiman T. United States Provisional Patent; 62/249,471 (2015-11-02). Cance: Patents & Royalties. Reece: Amgen: Consultancy, Honoraria; Janssen: Consultancy, Honoraria, Research Funding; Takeda: Consultancy, Honoraria, Research Funding; Celgene: Consultancy, Honoraria, Research Funding; Millennium: Research Funding; Karyopharm: Consultancy, Research Funding; BMS: Honoraria, Research Funding; GSK: Honoraria; Sanofi: Honoraria. Song: Celgene: Research Funding; Celgene, Janssen, Amgen, Takeda: Honoraria.


BMJ Open ◽  
2021 ◽  
Vol 11 (11) ◽  
pp. e057198
Author(s):  
Christopher Patrick Bretherton ◽  
Henry A Claireaux ◽  
Jonathan Gower ◽  
Shan Martin ◽  
Angela Thornhill ◽  
...  

ObjectiveTo determine research priorities for the management of complex fractures, which represent the shared priorities of patients, their families, carers and healthcare professionals.Design/settingA national (UK) research priority setting partnership.ParticipantsPeople who have experienced a complex fracture, their carers and relatives, and relevant healthcare professionals and clinical academics involved in treating patients with complex fractures. The scope includes open fractures, fractures to joints broken into multiple pieces, multiple concomitant fractures and fractures involving the pelvis and acetabulum.MethodsA multiphase priority setting exercise was conducted in partnership with the James Lind Alliance over 21 months (October 2019 to June 2021). A national survey asked respondents to submit their research uncertainties which were then combined into several indicative questions. The existing evidence was searched to ensure that the questions had not already been sufficiently answered. A second national survey asked respondents to prioritise the research questions. A final shortlist of 18 questions was taken to a stakeholder workshop, where a consensus was reached on the top 10 priorities.ResultsA total of 532 uncertainties, submitted by 158 respondents (including 33 patients/carers) were received during the initial survey. These were refined into 58 unique indicative questions, of which all 58 were judged to be true uncertainties after review of the existing evidence. 136 people (including 56 patients/carers) responded to the interim prioritisation survey and 18 questions were taken to a final consensus workshop between patients, carers and healthcare professionals. At the final workshop, a consensus was reached for the ranking of the top 10 questions.ConclusionsThe top 10 research priorities for complex fracture include questions regarding rehabilitation, complications, psychological support and return to life-roles. These shared priorities will now be used to guide funders and teams wishing to research complex fractures over the coming decade.


BMJ Open ◽  
2021 ◽  
Vol 11 (8) ◽  
pp. e047589
Author(s):  
Toni Zhong ◽  
Anisha Mahajan ◽  
Katherine Cowan ◽  
Claire Temple-Oberle ◽  
Geoff Porter ◽  
...  

BackgroundMajor improvements in breast cancer treatment in the last decade include advancements in postmastectomy breast reconstruction (PMBR). Unfortunately, the studies in PMBR are primarily researcher or industry led with minimal input from patients and caregivers. The aim of this study is to use the James Lind Alliance (JLA) approach to bring together the patients, caregivers and clinicians in a priority setting partnership to identify the most important unanswered research questions in PMBR.MethodsThe JLA priority setting methodology involved four key stages: gathering research questions on PMBR from patients, caregivers and clinicians; checking these research questions against existing evidence; interim prioritisation and a final consensus meeting to determine the top 10 unanswered research questions using the modified nominal group methodology.ResultsIn stage 1, 3168 research questions were submitted from 713 respondents across Canada, of which 73% of the participants were patients or caregivers. Stage 2 confirmed that there were a total of 48 unique unanswered questions. In stage three, 488 individuals completed the interim prioritisation survey and the top 25 questions were taken to a final consensus meeting. In the final stage, the top 10 unanswered research questions were determined. They cover a breadth of topics including personalised surgical treatment, safety of implants and newer techniques, access to PMBR, breast cancer recurrence and rehabilitation.InterpretationIdentification of the top 10 unanswered research questions is an important first step to generating relevant and impactful research that will ultimately improve the PMBR experience for patients with breast cancer.


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