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 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.

scholarly journals Future research priorities for lichen sclerosus – results of a James Lind Alliance Priority Setting Partnership

2019 ◽  
Vol 180 (5) ◽  
pp. 1236-1237 ◽  
Author(s):  
R.C. Simpson ◽  
S.M. Cooper ◽  
G. Kirtschig ◽  
S. Larsen ◽  
S. Lawton ◽  
...  
Keyword(s):  
Priority Setting ◽  
Research Priorities ◽  
Lichen Sclerosus ◽  
Future Research ◽  
James Lind Alliance ◽  
Priority Setting Partnership

scholarly journals Joint production of research priorities to improve the lives of those with childhood onset conditions that impair learning: the James Lind Alliance Priority Setting Partnership for ‘learning difficulties’

BMJ Open ◽  
2019 ◽  
Vol 9 (10) ◽  
pp. e028780
Author(s):  
Ai Keow Lim ◽  
Sinead Rhodes ◽  
Katherine Cowan ◽  
Anne O'Hare
Keyword(s):  
Young People ◽  
Priority Setting ◽  
Learning Difficulties ◽  
Third Sector ◽  
Research Priorities ◽  
Joint Production ◽  
Childhood Onset ◽  
James Lind Alliance ◽  
Research Questions ◽  
Priority Setting Partnership

ObjectivesTo engage children and young people with conditions that impair learning, their parents/carers and the health, education, social work and third sector professionals to identify and prioritise research questions for learning difficulties.DesignProspective surveys and consensus meeting guided by methods advocated by the James Lind Alliance.SettingScotland.MethodsThe Priority Setting Partnership came together through discussion and collaboration between the University of Edinburgh, Scottish charity The Salvesen Mindroom Centre and partners in the National Health Service, education services and the third sector. A steering group was established. Charity and professional organisations were recruited. Suggested questions were gathered in an open survey and from research recommendations by the National Institute for Health and Care Excellence and Scottish Intercollegiate Guidelines Network Guidance. Suggested questions and recommendations were summarised into 40 indicative research questions. These indicative questions were verified as uncertainties from research evidence. Respondents each nominated up to 10 questions as research priorities in an interim survey. The 25 highest-ranked questions from the interim survey were prioritised at the final priority setting workshop.Participants367 people submitted suggestions (29 individuals affected by learning difficulties, 147 parents/carers and 191 professionals). 361 people participated in the interim prioritisation (41 individuals, 125 parents/carers and 195 professionals). 25 took part in the final workshop (5 young people, 6 parents and 14 professionals).ResultsTop three research priorities related to (1) upskilling education professionals, (2) best education and community environment and (3) multidisciplinary practice and working with parents. Top 10 included best early interventions, upskilling health, social and third sector professionals, support for families, identifying early signs and symptoms, effective assessments and strategies against stigma and bullying and to live independent lives.ConclusionsResults will now be a resource for researchers and funders to understand and resolve learning difficulties and improve the lives of those affected with childhood onset conditions that result in learning difficulties.

scholarly journals UK Research Priorities for Electronic Cigarettes: A James Lind Alliance Priority Setting Partnership

2020 ◽  
Vol 17 (22) ◽  
pp. 8500
Author(s):  
Abby Hunter ◽  
Louise Ross ◽  
Toto Gronlund ◽  
Sue Cooper
Keyword(s):  
Priority Setting ◽  
Electronic Cigarettes ◽  
Research Priorities ◽  
Electronic Cigarette ◽  
Future Research ◽  
James Lind Alliance ◽  
Research Questions ◽  
The Uk ◽  
Priority Setting Partnership ◽  
Insight Into

This study aimed to bring together people who smoke or vape, people who do not smoke and healthcare professionals to identify and agree priorities for electronic cigarette research in the UK. We carried out a priority setting partnership, guided by the methodology developed by the James Lind Alliance involving five key stages: initiation, consultation, collation, prioritisation and dissemination. A total of 765 people submitted 1887 questions that they wanted answered by research. Questions were organised into themes, merged and rewritten as summary questions, with 52 unique questions going forward to the prioritisation survey. Participants then ranked their top 10 questions. Following this ranking exercise, the top 26 were identified by selecting the most frequently prioritised questions adjusting for representative stakeholder group. These were put forward for discussion in the final prioritisation workshop, whereby the top 10 electronic cigarette research questions were agreed. The list of priorities identified will be of interest to researchers and funders of electronic cigarette research and will hopefully direct future research and funding calls. These priorities provide insight into the questions that matter to people who are using or concerned about e-cigarettes, including frontline professionals.

scholarly journals Patient, Caregiver, and Healthcare Provider Priorities for Future Multiple Myeloma Research: Results of a James Lind Alliance Priority Setting Partnership

Blood ◽  
2021 ◽  
Vol 138 (Supplement 1) ◽  
pp. 4984-4984
Author(s):  
Anthony Reiman ◽  
Samantha Fowler ◽  
Lauren McLaughlin ◽  
Sarah Bridges ◽  
Marc Robichaud ◽  
...  
Keyword(s):  
Multiple Myeloma ◽  
Priority Setting ◽  
Health Research ◽  
Research Funding ◽  
Healthcare Providers ◽  
Research Priorities ◽  
Nominal Group ◽  
Future Research ◽  
James Lind Alliance ◽  
Priority Setting Partnership

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.

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 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.

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