The Canadian Frailty Priority Setting  Partnership: Research Priorities for  Older Adults Living with Frailty

BackgroundPatient engagement in research priority-setting is intended to democratize research and increase impact. The objectives of the Canadian Frailty Priority Setting Partnership (PSP) were to engage people with lived or clinical experience of frailty, and produce a list of research priorities related to care, support, and treatment of older adults living with frailty.MethodsThe Canadian Frailty PSP was supported by the Canadian Frailty Network, coordinated by researchers in Toronto, On-tario and followed the methods of the James Lind Alliance, which included establishing a Steering Group, inviting partner organizations, gathering questions related to care, support and treatment of older adults living with frailty, processing the data and prioritizing the questions.ResultsIn the initial survey, 799 submissions were provided by 389 individuals and groups. The 647 questions that were within scope were categorized, merged, and summarized, then checked against research evidence, creating a list of 41 unanswered questions. Prioritization took place in two stages: first, 146 individuals and groups participated in survey and their responses short-listed 22 questions; and second, an in-person workshop was held on September 26, 2017 in Toronto, Ontario where these 22 questions were discussed and ranked.ConclusionResearchers and research funders can use these results to inform their agendas for research on frailty. Strategies are needed for involving those with lived experience of frailty in research.

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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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Research priorities for the management of complex fractures: a UK priority setting partnership with the James Lind Alliance

BMJ Open ◽

10.1136/bmjopen-2021-057198 ◽

2021 ◽

Vol 11 (11) ◽

pp. e057198

Author(s):

Christopher Patrick Bretherton ◽

Henry A Claireaux ◽

Jonathan Gower ◽

Shan Martin ◽

Angela Thornhill ◽

...

Keyword(s):

National Survey ◽

Priority Setting ◽

Healthcare Professionals ◽

Research Priorities ◽

Complex Fracture ◽

Complex Fractures ◽

James Lind Alliance ◽

Initial Survey ◽

Life Roles ◽

Priority Setting Partnership

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.

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Identifying research priorities in cardiac surgery: a report from the James Lind Alliance Priority Setting Partnership in adult heart surgery

BMJ Open ◽

10.1136/bmjopen-2020-038001 ◽

2020 ◽

Vol 10 (9) ◽

pp. e038001

Author(s):

Florence Y Lai ◽

Riccardo G Abbasciano ◽

Bethany Tabberer ◽

Tracy Kumar ◽

Gavin J Murphy

Keyword(s):

Cardiac Surgery ◽

Priority Setting ◽

Heart Surgery ◽

Healthcare Professionals ◽

Research Priorities ◽

Stakeholder Groups ◽

James Lind Alliance ◽

Research Questions ◽

Initial Survey ◽

Priority Setting Partnership

ObjectiveTo identify research priorities that address the needs of people affected by cardiac surgery and those who support and care for them.DesignJames Lind Alliance (JLA) process—two surveys and a consensus workshop guided by an independent JLA adviser.SettingThe UK with international participation.ParticipantsThree stakeholder groups—heart surgery patients, carers and healthcare professionals involved in care delivery.MethodsThe initial survey was set to collect potential research questions in cardiac surgery as identified by stakeholders. Submitted questions were summarised into indicative questions. The existing evidence was searched to verify that these indicative questions had not been answered. In the second survey, stakeholders then voted for their top 10 from the list of unanswered questions. The top voted questions were taken forward for final ranking in a workshop.ResultsIn the initial survey, 629 respondents (28% patients/carers, 62% healthcare professionals) submitted 1082 potential questions. Of these, 797 in-scope questions were summarised into 49 indicative questions and of which 45 had not been answered by existing research. In the second survey, 492 respondents (43% patients/carers, 49% healthcare professionals) cast their votes with the top 12 from each of the three stakeholder groups totalling 21 questions advancing to the final priority setting workshop. The workshop attended by 25 delegates (10 patients/carers and 15 healthcare professionals) agreed on the top 10 research questions including long-term outcomes (quality of life), and aspects from preoperative personalised care (prehabilitation, frailty, comorbidities), intraoperative management (minimally invasive techniques), to prevention and management of postoperative complications (organ injury, atrial fibrillation, infection).ConclusionsThis Priority Setting Partnership (PSP) identified the priorities and unmet needs of patients and clinicians in cardiac surgery. The next step is to disseminate and implement the PSP results to ensure that these priorities shape future research and improve clinical services.

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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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