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Patient advocate involvement in the design and conduct of breast cancer clinical trials requiring the collection of multiple biopsies
Springer Science and Business Media LLC - Tập 4 - Trang 1-7 - 2018
Leona M. Batten, Indrani Subarna Bhattacharya, Laura Moretti, Joanne S. Haviland, Marie A. Emson, Sarah E. Miller, Monica Jefford, Mairead MacKenzie, Maggie Wilcox, Marie Hyslop, Rachel Todd, Claire F. Snowdon, Judith M. Bliss
Breast cancer is a diverse and varied disease. Recent research has shown that the collection of multiple biopsies before surgery can help researchers determine how the cancer is responding to treatment and can predict for long-term outcomes. However biopsies can be uncomfortable, and sometimes clinicians and research teams in hospitals may be reluctant to offer clinical trials requiring several bi...... hiện toàn bộ
Co-production: a kind revolution
Springer Science and Business Media LLC - Tập 8 - Trang 1-5 - 2022
Sophie Staniszewska, Gary Hickey, Pippa Coutts, Ben Thurman, Tina Coldham
Carnegie UK (CUK) and National Institute for Health Research (NIHR) INVOLVE held a meeting on the co-production of research, how we work together on equal terms. We brought together public contributors and individuals from organisations focused on research. We wanted to discuss how co-production could work in research, how it could be seen as business as usual, and to think through the barriers th...... hiện toàn bộ
Patients and public are important stakeholders in health technology assessment but the level of involvement is low – a call to action
Springer Science and Business Media LLC - Tập 7 - Trang 1-11 - 2021
Janet L. Wale, Samuel Thomas, Dominique Hamerlijnck, Ronald Hollander
Health technology assessment (HTA) agencies have an important role in the evaluation and approval of new technologies. They determine their value within a health system so to promote equitable, quality care with available healthcare resources. Many HTA agencies have some mechanism for involving patients in their processes, but there is great variability and an absence of comprehensive, robust prac...... hiện toàn bộ
Public Interest Group on Cancer Research: a successful patient–researcher partnership in Newfoundland and Labrador
Springer Science and Business Media LLC - Tập 8 - Trang 1-11 - 2022
Sevtap Savas, Holly Etchegary, Teri Stuckless, Cindy Whitten, Jason Wiseman, Derrick Bishop, John King, Janine Cutting, Darrell Peddle
Partnering with patients and family members affected by cancer is essential for meaningful research, public engagement and outreach, and advocacy activities. Our objective was to create a public interest group through an academic–community partnership focused on cancer research and public engagement. A purposeful recruitment process was implemented to ensure a diverse and inclusive group. The gro...... hiện toàn bộ
Co-designing a personalised care plan for patients with rectal cancer: reflections and practical learnings
Springer Science and Business Media LLC - Tập 10 - Trang 1-9 - 2024
Grace Gard, Jo Oakley, Kelsey Serena, Karla Gough, Michael Harold, Katya Gray, Helen Anderson, Judi Byrne, Jo Cockwill, Graeme Down, George Kiossoglou, Peter Gibbs
Consumer involvement is considered an essential component of contemporary cancer research, with a movement towards participatory methods, to the benefit of consumers and researchers. Overall, in-depth research on participant experiences and perceptions of their co-designer role—and how these may (or may not) change during a co-design project—is limited. The purpose of this paper was to synthesise ...... hiện toàn bộ
A protocol for co-creating research project lay summaries with stakeholders: guideline development for Canada’s AGE-WELL network
Springer Science and Business Media LLC - Tập 6 - Trang 1-8 - 2020
Mineko Wada, Judith Sixsmith, Gail Harwood, Theodore D. Cosco, Mei Lan Fang, Andrew Sixsmith
Funding bodies increasingly require researchers to write lay summaries to communicate projects’ real-world relevance to the public in an accessible way. However, research proposals and findings are generally not easily readable or understandable by non-specialist readers. Many researchers find writing lay summaries difficult because they typically write for fellow subject specialists or academics ...... hiện toàn bộ
Taking patient reported outcomes centre stage in cancer research – why has it taken so long?
Springer Science and Business Media LLC - Tập 4 - Trang 1-5 - 2018
Peter Selby, Galina Velikova
Roger Wilson challenged cancer professionals in research and care to place the patient perspective and patient reported outcome measures centre stage. The ability to collect information from patients using structured questionnaires (known as Patient Reported Outcome Measures or PROMs) which ask about clinical issues (such as disease symptoms or treatment side-effects) as well as social, emotional ...... hiện toàn bộ
Patient-partner engagement at the Centre de recherche du CHUS in the Province of Québec, Canada: from an intuitive methodology to outreach after three years of implementation
Springer Science and Business Media LLC - Tập 7 - Trang 1-17 - 2021
Denis Boutin, Susan C. Mastine, Luc Beaubien, Maryse Berthiaume, Denise Boilard, Jaime Borja, Edouard Botton, Janie Boulianne-Gref, Sylvie Breton, Christian-Alexandre Castellano, Gisèle Charpentier, Francois-Pierre Counil, Marie-Josée Cozmano, Pierre Dagenais, Guy Drouin, Marie-Josée Fortier, Caroline Francoeur, Louise Gagné, David Héraud, Denise Hêtu, Marie-Pier Houde, Ginette Ladouceur, Marjolaine Landry, Elisabeth Leblanc, Christine Loignon, Valéry Lussier, Annie Morin, Nathalie Ouellet, Claude Quintin, Avinash Ramnarine, Catherine Wilhelmy, Amy Svotelis, Marie-Ève Thibault, William D. Fraser, Marie-Claude Battista
Medical societies and funding agencies strongly recommend that patients be included as partners in research publications and grant applications. Although this “top-down” approach is certainly efficient at forcing this new and desirable type of collaboration, our past experience demonstrated that it often results in an ambiguous relationship as not yet well integrated into the cultures of either pa...... hiện toàn bộ
The Research Family Advisory Committee: the patient and family view of implementing a research-focused patient engagement strategy
Springer Science and Business Media LLC - Tập 8 - Trang 1-7 - 2022
Francine Buchanan, Amy Peasgood, Megan Easton, Karen Haas, Unni Narayanan
Patient engagement in research, a collaborative practice of including patients and families as active and respected partners in the research process, leads to improved quality of patient care and positively affects outcomes for patients and families. There is strong support for the benefits of patient engagement. What is less clear are the methods by which organizations can achieve authentic patie...... hiện toàn bộ
Involving research participants in a pan-European research initiative: the EPAD participant panel experience
Springer Science and Business Media LLC - Tập 6 - Trang 1-11 - 2020
S. Gregory, E. M. Bunnik, A. B. Callado, I. Carrie, C. De Boer, J. Duffus, K. Fauria, S. Forster, D. Gove, I. Knezevic, A. Laquidain, D. Pennetier, S. Saunders, S. Sparks, J. Rice, C. W. Ritchie, R. Milne
Including participants in patient and public involvement activities is increasingly acknowledged as a key pillar of successful research activity. Such activities can influence recruitment and retention, as well as researcher experience and contribute to decision making in research studies. However, there are few established methodologies of how to set up and manage participant involvement activiti...... hiện toàn bộ
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