Research priorities in metastatic breast cancer: A James Lind Alliance Priority Setting Partnership

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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Abstract P5-19-07: Defining priorities for research: Interim results of the Canadian metastatic breast cancer priority setting partnership

10.1158/1538-7445.sabcs17-p5-19-07 ◽

2018 ◽

Author(s):

N Nixon ◽

C Simmons ◽

J Lemieux ◽

S Verma

Keyword(s):

Breast Cancer ◽

Metastatic Breast Cancer ◽

Priority Setting ◽

Metastatic Breast ◽

Priority Setting Partnership

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

BMJ Open ◽

10.1136/bmjopen-2020-044207 ◽

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

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

Canadian Urological Association Journal ◽

10.5489/cuaj.4590 ◽

2017 ◽

Vol 11 (12) ◽

pp. 379-87 ◽

Cited By ~ 13

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

British Journal of Dermatology ◽

10.1111/bjd.18209 ◽

2019 ◽

Vol 181 (4) ◽

pp. 871-873 ◽

Cited By ~ 5

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

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Our research priorities in mesothelioma: differences between patients and carers attending a regional support group and the final outcomes from A James Lind Alliance Priority Setting Partnership

Lung Cancer ◽

10.1016/s0169-5002(18)30093-x ◽

2018 ◽

Vol 115 ◽

pp. S28

Author(s):

S. Bolton

Keyword(s):

Support Group ◽

Priority Setting ◽

Research Priorities ◽

James Lind Alliance ◽

Priority Setting Partnership

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

BMJ Open ◽

10.1136/bmjopen-2019-032178 ◽

2019 ◽

Vol 9 (11) ◽

pp. e032178 ◽

Cited By ~ 3

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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