scholarly journals Top 10 (plus 1) research priorities for expectant families and those with children to age 24 months in Alberta, Canada: results from the Family Research Agenda Initiative Setting (FRAISE) priority setting partnership project

BMJ Open ◽  
2021 ◽  
Vol 11 (12) ◽  
pp. e047919
Author(s):  
Meredith Lee Brockway ◽  
Elizabeth Keys ◽  
Katherine Stuart Bright ◽  
Carla Ginn ◽  
Leslie Conlon ◽  
...  
Keyword(s):  
Priority Setting ◽  
Online Survey ◽  
Research Priorities ◽  
Steering Committee ◽  
Study Objective ◽  
Child Research ◽  
James Lind Alliance ◽  
Survey Responses ◽  
Priority Setting Partnership ◽  
Parents And Caregivers

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.

scholarly journals Common hand and wrist conditions: creation of UK research priorities defined by a James Lind Alliance Priority Setting Partnership

BMJ Open ◽  
2021 ◽  
Vol 11 (3) ◽  
pp. e044207
Author(s):  
Alexia Karantana ◽  
Tim Davis ◽  
Donna Kennedy ◽  
Debbie Larson ◽  
Dominic Furniss ◽  
...  
Keyword(s):  
Priority Setting ◽  
Research Priorities ◽  
Treatment Modalities ◽  
Grant Applications ◽  
Charitable Organisation ◽  
James Lind Alliance ◽  
Treatment Uncertainties ◽  
The Uk ◽  
Survey Responses ◽  
Priority Setting Partnership

ObjectivePrioritisation of important treatment uncertainties for ‘Common Conditions Affecting the Hand and Wrist’ via a UK-based James Lind Alliance Priority Setting Partnership.SettingThis process was funded by a national charitable organisation and based in the UK.ParticipantsAnyone with experience of common conditions affecting the adult hand and wrist, including patients, carers and healthcare professionals. All treatment modalities delivered by a hand specialist, including therapists, surgeons or other allied professionals, were considered.InterventionsEstablished James Lind Alliance Priority Setting Partnership methods were employed.Electronic and paper questionnaires identified potential uncertainties. These were subsequently confirmed using relevant, up-to-date systematic reviews. A final list of top 10 research uncertainties was developed via a face-to-face workshop with representation from patients and clinicians. Impact of research was sought by surveying hand clinicians electronically.Outcome measuresThe survey responses and prioritisation—both survey and workshop based.ResultsThere were 889 individually submitted questions from the initial survey, refined to 59 uncertainties across 32 themes. Eight additional uncertainties were added from published literature before prioritisation by 261 participants and the workshop allowed the final top 10 list to be finalised. The top 10 has so far contributed to the award of over £3.8 million of competitively awarded funding.ConclusionsThe Common Conditions in the Hand and Wrist Priority Setting Partnership identified important research questions and has allowed research funders to identify grant applications which are important to both patients and clinicians

scholarly journals Research priorities for young people with cancer: a UK priority setting partnership with the James Lind Alliance

BMJ Open ◽  
2019 ◽  
Vol 9 (8) ◽  
pp. e028119 ◽  
Author(s):  
Susie Aldiss ◽  
Lorna A Fern ◽  
Robert S Phillips ◽  
Amy Callaghan ◽  
Karen Dyker ◽  
...  
Keyword(s):  
Young People ◽  
Priority Setting ◽  
Online Survey ◽  
Care Delivery ◽  
Research Priorities ◽  
Well Being ◽  
Future Research ◽  
Cancer Support ◽  
James Lind Alliance ◽  
Priority Setting Partnership

ObjectivesTo conduct a UK-wide survey of young people who have experienced cancer, carers and professionals, to identify and prioritise research questions to inform decisions of research funders and support the case for research with this unique cancer population.DesignJames Lind Alliance Priority Setting Partnership.SettingUK health service and community.MethodsA steering group oversaw the initiative and partner organisations were recruited. Unanswered questions were collected in an online survey. Evidence searching verified uncertainties. An interim survey was used to rank questions prior to a final prioritisation workshop.ParticipantsYoung people aged 13–24 years with a current or previous cancer diagnosis, their families, friends, partners and professionals who work with this population.ResultsTwo hundred and ninety-two respondents submitted 855 potential questions. Following a refining process and removal of ‘out of scope’ questions, 208 unique questions remained. Systematic evidence checking identified seven answered questions and 16 were the subject of ongoing studies. The interim survey was completed by 174 participants. The top 30 questions were prioritised at a workshop attended by 25 young people, parents and multidisciplinary professionals. The top three priorities are: (1) What psychological support package improves psychological well-being, social functioning and mental health during and after treatment? (2) What interventions, including self-care, can reduce or reverse adverse short-term and long-term effects of cancer treatment? (3) What are the best strategies to improve access to clinical trials? The remaining questions reflect the complete cancer pathway: new therapies, life after cancer, support, education/employment, relapse and end-of-life care.ConclusionsWe have identified shared research priorities for young people with cancer using a rigorous, person-centred approach involving stakeholders typically not involved in setting the research agenda. The breadth of priorities suggest future research should focus on holistic and psychosocial care delivery as well as traditional drug/biology research.

scholarly journals The kidney cancer research priority-setting partnership: Identifying the top 10 research priorities as defined by patients, caregivers, and expert clinicians

2017 ◽  
Vol 11 (12) ◽  
pp. 379-87 ◽  
Author(s):  
Jennifer Jones ◽  
Jaimin Bhatt ◽  
Jonathan Avery ◽  
Andreas Laupacis ◽  
Katherine Cowan ◽  
...  
Keyword(s):  
Cancer Research ◽  
Kidney Cancer ◽  
Priority Setting ◽  
Research Priorities ◽  
Research Network ◽  
Cancer Research Network ◽  
Research Priority ◽  
Funding Agencies ◽  
James Lind Alliance ◽  
Priority Setting Partnership

It is critically important to define disease-specific research priorities to better allocate limited resources. There is growing recognition of the value of involving patients and caregivers, as well as expert clinicians in this process. To our knowledge, this has not been done this way for kidney cancer. Using the transparent and inclusive process established by the James Lind Alliance, the Kidney Cancer Research Network of Canada (KCRNC) sponsored a collaborative consensus-based priority-setting partnership (PSP) to identify research priorities in the management of kidney cancer. The final result was identification of 10 research priorities for kidney cancer, which are discussed in the context of current initiatives and gaps in knowledge. This process provided a systematic and effective way to collaboratively establish research priorities with patients, caregivers, and clinicians, and provides a valuable resource for researchers and funding agencies.

scholarly journals The top 10 research priorities for psoriasis in the U.K.: results of a James Lind Alliance psoriasis Priority Setting Partnership

2019 ◽  
Vol 181 (4) ◽  
pp. 871-873 ◽  
Author(s):  
R. Majeed‐Ariss ◽  
M. McPhee ◽  
H. McAteer ◽  
C.E.M. Griffiths ◽  
H. Young
Keyword(s):  
Priority Setting ◽  
Research Priorities ◽  
James Lind Alliance ◽  
Priority Setting Partnership

scholarly journals What are the most important unanswered research questions in trial retention? A James Lind Alliance Priority Setting Partnership: the PRioRiTy II (Prioritising Retention in Randomised Trials) study

Trials ◽  
2019 ◽  
Vol 20 (1) ◽  
Author(s):  
Dan Brunsdon ◽  
Linda Biesty ◽  
Peter Brocklehurst ◽  
Valerie Brueton ◽  
Declan Devane ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Priority Setting ◽  
Online Survey ◽  
Consensus Meeting ◽  
Randomised Trials ◽  
Face To Face ◽  
Key Stakeholders ◽  
James Lind Alliance ◽  
Research Questions ◽  
Priority Setting Partnership

Abstract Background One of the top three research priorities for the UK clinical trial community is to address the gap in evidence-based approaches to improving participant retention in randomised trials. Despite this, there is little evidence supporting methods to improve retention. This paper reports the PRioRiTy II project, a Priority Setting Partnership (PSP) that identified and prioritised unanswered questions and uncertainties around trial retention in collaboration with key stakeholders. Methods This PSP was conducted in collaboration with the James Lind Alliance, a non-profit making initiative, to support key stakeholders (researchers, patients, and the public) in jointly identifying and agreeing on priority research questions. There were three stages. (1) First an initial online survey was conducted consisting of six open-ended questions about retention in randomised trials. Responses were coded into thematic groups to create a longlist of questions. The longlist of questions was checked against existing evidence to ensure that they had not been answered by existing research. (2) An interim stage involved a further online survey where stakeholders were asked to select questions of key importance from the longlist. (3) A face-to-face consensus meeting was held, where key stakeholder representatives agreed on an ordered list of 21 unanswered research questions for methods of improving retention in randomised trials. Results A total of 456 respondents yielded 2431 answers to six open-ended questions, from which 372 questions specifically about retention were identified. Further analysis included thematically grouping all data items within answers and merging questions in consultation with the Steering Group. This produced 27 questions for further rating during the interim survey. The top 21 questions from the interim online survey were brought to a face-to-face consensus meeting in which key stakeholder representatives prioritised the order. The ‘Top 10’ of these are reported in this paper. The number one ranked question was ’What motivates a participant’s decision to complete a clinical trial?’ The entire list will be available at www.priorityresearch.ie. Conclusion The Top 10 list can inform the direction of future research on trial methods and be used by funders to guide projects aiming to address and improve retention in randomised trials.

scholarly journals Identifying and prioritising unanswered research questions for people with hyperacusis: James Lind Alliance Hyperacusis Priority Setting Partnership

BMJ Open ◽  
2019 ◽  
Vol 9 (11) ◽  
pp. e032178 ◽  
Author(s):  
Kathryn Fackrell ◽  
Linda Stratmann ◽  
Veronica Kennedy ◽  
Carol MacDonald ◽  
Hilary Hodgson ◽  
...  
Keyword(s):  
Lived Experience ◽  
Priority Setting ◽  
Healthcare Professionals ◽  
Research Priorities ◽  
Current Evidence ◽  
Future Research ◽  
James Lind Alliance ◽  
Essential Resource ◽  
Underlying Mechanisms ◽  
Priority Setting Partnership

ObjectiveTo determine research priorities in hyperacusis that key stakeholders agree are the most important.Design/settingA priority setting partnership using two international surveys, and a UK prioritisation workshop, adhering to the six-staged methodology outlined by the James Lind Alliance.ParticipantsPeople with lived experience of hyperacusis, parents/carers, family and friends, educational professionals and healthcare professionals who support and/or treat adults and children who experience hyperacusis, including but not limited to surgeons, audiologists, psychologists and hearing therapists.MethodsThe priority setting partnership was conducted from August 2017 to July 2018. An international identification survey asked respondents to submit any questions/uncertainties about hyperacusis. Uncertainties were categorised, refined and rephrased into representative indicative questions using thematic analysis techniques. These questions were verified as ‘unanswered’ through searches of current evidence. A second international survey asked respondents to vote for their top 10 priority questions. A shortlist of questions that represented votes from all stakeholder groups was prioritised into a top 10 at the final prioritisation workshop (UK).ResultsIn the identification survey, 312 respondents submitted 2730 uncertainties. Of those uncertainties, 593 were removed as out of scope, and the remaining were refined into 85 indicative questions. None of the indicative questions had already been answered in research. The second survey collected votes from 327 respondents, which resulted in a shortlist of 28 representative questions for the final workshop. Consensus was reached on the top 10 priorities for future research, including identifying causes and underlying mechanisms, effective management and training for healthcare professionals.ConclusionsThese priorities were identified and shaped by people with lived experience, parents/carers and healthcare professionals, and as such are an essential resource for directing future research in hyperacusis. Researchers and funders should focus on addressing these priorities.

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