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      Increasing Engagement for Breast Cancer Screening and Treatment: The “ICANTREAT” Community of Expertise Initiative

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          Abstract

          Background: Incidence of breast cancer and associated mortality are on the rise globally. Breast cancer incidence in India is on the rise and also accounts for a staggering 50% mortality rate among women. Health illiteracy, socio-economic and cultural barriers in addition to lack of an organized nationwide screening and prevention programme contribute to poor patient outcomes. Thus, it is imperative to strengthen the existing screening and treatment facilities to address the increasing cancer burden. In this regard, we conducted a workshop to investigate the scope of a multi- stakeholder engagement in breast cancer screening and treatment. Methods: A stakeholder workshop grounded in an established co-design methodology was convened in a semi-urban coastal district in South India with active participation of physicians, surgeons, occupational therapists, community leaders, programme officers, public health professionals and breast cancer survivors. Shiffman and Smith’s framework was adapted to highlight barriers to screening and role of stakeholders in the co-design of solutions. Results: Deliberate and active discussions marked the workshop proceedings resulting in the identification of individual and systems level barriers, facilitators and implementation strategies. Social stigma and non-existent standard protocols for screening and referral were recognised as critical barriers, while community engagement and a dedicated patient advocate were the proposed facilitators .Conclusion: This workshop was an important step in bringing together key stakeholders and marked the beginning of the ICANTREAT initiative and a Community of Expertise. The outcomes highlight the importance of stakeholder involvement in the cancer- care pathway for breast cancer screening, diagnosis and treatment.

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          Most cited references14

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          The Global Burden of Cancer 2013

          Cancer is among the leading causes of death worldwide. Current estimates of cancer burden in individual countries and regions are necessary to inform local cancer control strategies.
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            Co-creation and the new landscapes of design

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              Research co-design in health: a rapid overview of reviews

              Background Billions of dollars are lost annually in health research that fails to create meaningful benefits for patients. Engaging in research co-design – the meaningful involvement of end-users in research – may help address this research waste. This rapid overview of reviews addressed three related questions, namely (1) what approaches to research co-design exist in health settings? (2) What activities do these research co-design approaches involve? (3) What do we know about the effectiveness of existing research co-design approaches? The review focused on the study planning phase of research, defined as the point up to which the research question and study design are finalised. Methods Reviews of research co-design were systematically identified using a rapid overview of reviews approach (PROSPERO: CRD42019123034). The search strategy encompassed three academic databases, three grey literature databases, and a hand-search of the journal Research Involvement and Engagement. Two reviewers independently conducted the screening and data extraction and resolved disagreements through discussion. Disputes were resolved through discussion with a senior author (PB). One reviewer performed quality assessment. The results were narratively synthesised. Results A total of 26 records (reporting on 23 reviews) met the inclusion criteria. Reviews varied widely in their application of ‘research co-design’ and their application contexts, scope and theoretical foci. The research co-design approaches identified involved interactions with end-users outside of study planning, such as recruitment and dissemination. Activities involved in research co-design included focus groups, interviews and surveys. The effectiveness of research co-design has rarely been evaluated empirically or experimentally; however, qualitative exploration has described the positive and negative outcomes associated with co-design. The research provided many recommendations for conducting research co-design, including training participating end-users in research skills, having regular communication between researchers and end-users, setting clear end-user expectations, and assigning set roles to all parties involved in co-design. Conclusions Research co-design appears to be widely used but seldom described or evaluated in detail. Though it has rarely been tested empirically or experimentally, existing research suggests that it can benefit researchers, practitioners, research processes and research outcomes. Realising the potential of research co-design may require the development of clearer and more consistent terminology, better reporting of the activities involved and better evaluation.
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                Author and article information

                Journal
                Asian Pac J Cancer Prev
                Asian Pac J Cancer Prev
                APJCP
                Asian Pacific Journal of Cancer Prevention : APJCP
                West Asia Organization for Cancer Prevention (Iran )
                1513-7368
                2476-762X
                December 2020
                : 21
                : 12
                : 3655-3659
                Affiliations
                [1 ] Department of Community Medicine, Kasturba Medical College, Manipal, Manipal Academy of Higher Education (MAHE), Manipal, Karnataka, India.
                [2 ] Centre for Community Oncology, KMC, Manipal, India.
                [3 ] Institute of Applied Health Sciences, University of Aberdeen, Scotland,
                [4 ] Centre for Indigenous Population, KMC, Manipal, India.
                Author notes
                [* ]For Correspondence: suma.nair@manipal.edu
                Article
                10.31557/APJCP.2020.21.12.3655
                8046307
                33369465
                37e8abec-a229-4bf4-9df3-5473dd889c64

                This is an Open Access article distributed under the terms of the Creative Commons Attribution License, ( http://creativecommons.org/licenses/by/3.0/) which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

                History
                : 3 October 2020
                : 23 December 2020
                Categories
                Research Article

                stakeholder,workshop,cancer,care,patient advocate
                stakeholder, workshop, cancer, care, patient advocate

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