Setting Research Priorities for Kidney Cancer

Jones, Jennifer; Bhatt, Jaimin R.; Avery, Jonathan; Laupacis, Andreas; Cowan, Katherine; Basappa, Naveen S.; Basiuk, Joan; Canil, Christina; Al-Asaaed, Sohaib; Heng, Daniel Yick Chin; Wood, Lori; Stacey, Dawn; Kollmannsberger, Christian; Jewett, Michael A.S.

doi:10.1016/j.eururo.2017.04.011

Cited by 20 publications

(16 citation statements)

References 46 publications

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“…This can include adopting the novel five-step approach of an explicit and parallel patient engagement process which includes a greater emphasis on patient engagement. The illustrative description of both the process and outcomes of the priority setting process used for this study builds on the existing research in Canada [ 15 , 16 , 18 , 63 – 69 ]. This study supports the growth of the evidence on what works in achieving and sustaining productive patient engagement [ 43 ].…”

Section: Discussionmentioning

confidence: 99%

People with lived experience (PWLE) of depression: describing and reflecting on an explicit patient engagement process within depression research priority setting in Alberta, Canada

et al. 2018

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Plain English summaryThe Alberta Depression Research Priority Setting Project aimed to meaningfully involve patients, families and clinicians in determining a research agenda aligned to the needs of Albertans who have experienced depression. The project was modeled after a process developed in the UK by the James Lind Alliance and adapted to fit the Alberta, Canada context. This study describes the processes used to ensure the voices of people with lived experience of depression were integrated throughout the project stages. The year long project culminated with a facilitated session to identify the top essential areas of depression research focus. People with lived experience were engaged as part of the project’s Steering Committee, as survey participants and as workshop participants. It is hoped this process will guide future priority setting opportunities and advance depression research in Alberta.Abstract Background The Depression Research Priority Setting (DRPS) project has the clear aim of describing the patient engagement process used to identify depression research priorities and to reflect on the successes of this engagement approach, positive impacts and opportunities for improvement. To help support patient-oriented depression research priority setting in Alberta, the Patient Engagement (PE) Platform of the Alberta Strategy for Patient Oriented Research Support for People and Patient-Oriented Research and Trials (SUPPORT) Unit designed, along with the support of their partners in addictions and mental health, an explit process to engage patients in the design and execution of the DRPS. Methods The UK’s James Lind Alliance (JLA) Priority Setting Partnership (PSP) method was adapted into a six step process to ensure voices of “people with lived experience” (PWLE) with depression were included throughout the project stages. This study uses an explicit and parallel patient engagement process throughout each estage of the PSP designed by the PE Platform. Patient engagement was divided into a five step process: i) Awareness and relationship building; ii) Co-designing and co-developing a shared decision making process; iii) Collaborative communication; iv) Collective sensemaking; and v) Acknowledgement, celebration and recognition. A formative evaluation of the six PE processes was undertaken to explore the success of the parallel patient engagement process. Results This project was successful in engaging people with lived depression experience as partners in research priority setting, incorporating their voices into the discussions and decisions that led to the top 25 depression research questions. Conclusions The DRPS project has positively contributed to depression research in Canada by identifying the priorities of Albertans who have experienced depression for depression research. Dissemination activities to promote further knowledge exchange of prioritized research questions, with emphasis on the importance of process in engaging the voices of PWLE of depression are planned.Electronic supplementary mater...

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Section: Discussionmentioning

confidence: 99%

People with lived experience (PWLE) of depression: describing and reflecting on an explicit patient engagement process within depression research priority setting in Alberta, Canada

et al. 2018

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“…Indeed, our work identified different RGs to a previous RCC initiative not directly involving patients, which placed greater emphasis on understanding tumour biology, genomic and epigenetic factors and epidemiology (10). Conversely, initiatives in which patient participation was central, uncovered RGs across similar overarching themes highlighted by our work, including early detection, personalised patient management and follow up (11). Research gaps deemed crucial in our work focus on maximising quality of life and managing often overlooked groups, such as individuals with reduced performance status and rarer RCC subtypes.…”

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confidence: 82%

“…EU Focus represents the most contemporary and systematic priority setting initiative in RCC to date, focusing on a European setting (9)(10)(11). Although the majority of participants represent a UK and European setting, a Canadian project published in European Urology identified overlapping research priorities suggesting these may be common to all Western settings (11). Further research should focus on fostering international collaborations to bridge the research gaps identified; as well as evaluating geographical variation between international research needs.…”

Section: The Work Described Inmentioning

confidence: 99%

Setting Research Priorities in Partnership with Patients to Provide Patient-centred Urological Cancer Care

et al. 2019

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“…26 The present study helps illustrate outcomes of meaningful patient and researcher engagement, building on other such work in Canada. 20,[27][28][29][30][31][32][33][34][35] It also contributes to the growth of evidence that people with lived experience are valuable research partners.…”

Section: Openmentioning

confidence: 96%

The top research questions asked by people with lived depression experience in Alberta: a survey

Breault

Rittenbach

Hartle

et al. 2018

cmajo

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epression is a major public health issue in Canada. 1 About 8% of adults aged 25-64 years are projected to experience major depression at some time in their lives. 2 Depression is estimated to account for at least $32.3 billion of direct and indirect costs to this nation annually. 3 Continued investment in research that explores prevention and treatment is needed, 4,5 in particular through engaging patients (i.e., people with depression, family members and informal caretakers) in this endeavour to better ensure that research is relevant to their needs. Patient engagement occurs "when patients meaningfully and actively collaborate in the governance, priority setting, and conduct of research, as well as in summarizing, distributing, sharing, and applying its resulting knowledge." 6 However, research findings suggest that medical research topics are selected predominantly by researchers and funding agencies, with little input from patients themselves, 7 and that, even when patients are engaged in setting research priorities, their opinions are sometimes overlooked. 8 Engaging people with lived experience of a health situation in setting research priorities is one structured way of influencing researchers and research funders to consider their opinions.

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Setting Research Priorities for Kidney Cancer

Cited by 20 publications

References 46 publications

People with lived experience (PWLE) of depression: describing and reflecting on an explicit patient engagement process within depression research priority setting in Alberta, Canada

People with lived experience (PWLE) of depression: describing and reflecting on an explicit patient engagement process within depression research priority setting in Alberta, Canada

Setting Research Priorities in Partnership with Patients to Provide Patient-centred Urological Cancer Care

The top research questions asked by people with lived depression experience in Alberta: a survey

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