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1.
Res Involv Engagem ; 9(1): 86, 2023 Sep 29.
Article in English | MEDLINE | ID: mdl-37775825

ABSTRACT

BACKGROUND: As research teams, networks, and institutes, and health, medical, and scientific communities begin to build consensus on the benefits of patient engagement in cancer research, research funders are increasingly looking to meaningfully incorporate patient partnership within funding processes and research requirements. The Canadian Cancer Society (CCS), the largest non-profit cancer research funder in Canada, set out to co-create a patient engagement in cancer research strategy with patients, survivors, caregivers and researchers. The goal of this strategy was to meaningfully and systematically engage with patients in research funding and research activities. METHODS: A team of four patient partners with diverse cancer and personal experiences, and two researchers at different career stages agreed to participate as members of the strategy team. Ten staff members participated in supportive roles and to give context regarding different departments of CCS. The strategy was co-developed in 2021/2022 over a series of 7 workshops using facilitation strategies such as ground rules and consensus building, and methods such as Design Thinking. The strategy was subjected to 3 rounds of validation. RESULTS: The co-creation and validation process resulted in a multi-faceted strategy with actionable sections, including vision, guiding principles, engagement methods, 13 prioritized engagement activities spanning the spectrum of research funding, and an evaluation framework. The experience of co-creating the strategy was captured using the Patient and Public Engagement Evaluation Tool and revealed a positive, supportive experience. CONCLUSIONS: Lessons learned included the value of an emphasis on a co-creation process from day one, the utility of facilitation techniques such as ground rules for dialogue, consensus building and Design Thinking, and the importance (and challenge) of designing for and incorporating equity when drafting the strategy. Future work will include implementation and evaluation of the strategy, as well as an examination of further ways to meaningfully and systematically engage diverse voices in research and research funding.


As researchers and healthcare providers see benefits of patient engagement in cancer research, research funders are also looking to engage with patients in their funding processes and research activities. The Canadian Cancer Society (CCS), the largest non-profit cancer research funder in Canada, set out to co-create a patient engagement in cancer research strategy with patients, survivors, caregivers and researchers. The goal of this strategy was to meaningfully and systematically engage with patients in research funding and research activities. Four patient partners and two researchers were supported by ten CCS staff members to co-create the strategy in 2021/2022 over a series of 7 workshops. They used facilitation strategies such as ground rules and consensus building, and methods such as Design Thinking. The strategy was then validated. Co-creation resulted in an easy-to-use strategy with actionable sections, including vision, guiding principles, engagement methods, 13 prioritized activities, and an evaluation framework. The experience of co-creating the strategy was captured using a well-regarded evaluation tool and revealed a positive, supportive experience.    Lessons learned during the process included making sure the co-creation process started on day one, the usefulness of facilitating the process, and the importance of considering issues of equity when drafting the strategy.

2.
J Eval Clin Pract ; 25(6): 938-942, 2019 Dec.
Article in English | MEDLINE | ID: mdl-30793450

ABSTRACT

Evidence-based medicine (EBM) calls for medical practitioners to "integrate" our best available evidence into clinical practice. A significant amount of the literature on EBM takes this integration to be unproblematic, focusing on questions like how to interpret evidence and engage with patient values, rather than critically looking at how these features of EBM can be implemented together. Other authors have also commented on this gap in the literature, for example, identifying the lack of clarity about how patient preferences and evidence from trials is supposed to be integrated in practice. In this paper, I look at this issue from an epistemological perspective, (looking at how different types of knowledge in EBM can be used to make sounds judgements). In particular, I introduce an epistemological issue for this integration problem, which I call the epistemic integration problem. This is essentially the problem of how we can use information that is both general (eg, about a population sample) and descriptive (eg, about what expected outcomes are) to reach clinical judgements that are individualized (applying to a particular patient) and normative (about what is best for their health).


Subject(s)
Evidence-Based Medicine , Patient Preference , Practice Patterns, Physicians' , Social Validity, Research , Translational Research, Biomedical/ethics , Communication Barriers , Evidence-Based Medicine/ethics , Evidence-Based Medicine/methods , Humans , Knowledge , Knowledge Bases , Philosophy, Medical , Practice Patterns, Physicians'/ethics , Practice Patterns, Physicians'/organization & administration , Practice Patterns, Physicians'/trends
3.
Philosophia (Ramat Gan) ; 45(3): 1235-1251, 2017.
Article in English | MEDLINE | ID: mdl-30147175

ABSTRACT

Cartesian scepticism poses the question of how we can justify our belief that other humans experience consciousness in the same way that we do. Wittgenstein's response to this scepticism is one that does not seek to resolve the problem by providing a sound argument against the Cartesian sceptic. Rather, he provides a method of philosophical inquiry which enables us to move past this and continue our inquiry without the possibility of solipsism arising as a philosophical problem in the first place. In this paper, I propose that Wittgenstein's method of dismissing the Cartesian sceptic can also be applied to the problems posed by the 'moral sceptic', who denies the truth of all ethical or moral claims. I will argue that in the same way Wittgenstein's focus on public language enables us to dismiss the traditional problem of other minds, a focus on public moral practices or language-games also enables us to dismiss the idea that moral claims are always 'meaningless', 'false' or 'nonsensical'. On this account, the moral sceptic is misguided in much the same way as the solipsist who implicitly admits the existence of other minds in her practices. The moral sceptic who still engages in moral activities also implicitly admits the existence of meaningful moral positions. Wittgenstein's dismissal of the Cartesian sceptic, as I understand it, can be broadly divided into two parts. The first part is an account of language acquisition. This part outlines how we might come to see other humans as conscious, thinking, feeling beings from a causal perspective. This suggests that we can arrive at an understanding of other minds as a primary perception itself - without needing to posit this perception as a kind of deductive or inductive hypothesis. Secondly, we can see how this relates to an epistemic model of language. This focuses on the role of language as something which consists of rule-governed activities, where the existence of other minds is embedded in our understanding of the world as a kind of grammatical rule, rather than an observational hypothesis. From both these arguments the Cartesian sceptic is, (on Wittgenstein's account), irrelevant to some forms of philosophical inquiry. This is because the sceptic takes the existence of other minds to be a rational hypothesis/inference when it is not. I suggest that this approach can be applied to moral scepticism if we take certain normative claims as grammatical dispositions (practical and tautological), rather than rational or metaphysical propositions. Hence, the moral sceptic who offers a rational or logical critique of these moral foundations is not necessarily saying anything relevant to our practices - the moral stances which they refute as rationally meaningless were never based on purely rational or logical hypotheses in the first place.

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