Rethinking engagement

Gilbert, David M.

doi:10.1192/bjb.2018.55

Cited by 8 publications

(10 citation statements)

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“…A crucial part of Andrew's approach was recognising that his voice did not reflect or represent all rheumatology patients everywhere, and that he was just reflecting his own experience, rather than being a representative of 'the patient voice' in general, because others may have different perspectives and opinions. As the use of a single patient partner has been criticised previously, and they cannot and should not speak for all patients (Gilbert, 2019), Andrew looked to develop a wider understanding of patient perspectives, and he discussed aspects of the broad topic with some of his fellow patients at his local patient group. This contributed to an additional layer of PPI that Andrew used when reflecting on aspects of the project to mitigate the limitations of a single patient partner.…”

Section: Expectationsmentioning

confidence: 99%

Collaboration between doctoral researchers and patient research partners: reflections and considerations

Jones

Hunt

2022

Research for All

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A key principle of working in collaboration with patient research partners (patients contributing to research projects as team members, rather than as participants) is that they should be equal partners with researchers and health professionals. This presents a challenge in doctoral research, where students are expected to own their research decisions. Consequently, efforts are required to ensure that patient partners’ involvements are not tokenistic. This case study brings together the reflections of a recently completed doctoral student and a patient partner, who was part of the doctoral supervisory team. It discusses the role that the patient partner took during the doctorate and the activities in which he was involved. Both the researcher and the patient partner reflect on their expectations and experiences of collaboration. These reflections include factors that facilitated good working practices, the process of building rapport, and the benefits each got out of their collaboration. The interactions exploring ‘the dance of academia’ (the processes that were formally part of the PhD process or the aspects of academic work that were not directly related to completing the research) required recognition. Open, ongoing communication and practical considerations to support the patient partner were key to establishing a strong working relationship, and to determining what a meaningful contribution looked like at each stage of the process. Working with a patient partner as a doctoral student adds value to the doctoral process, and it is a vital opportunity to develop good practice as a researcher.

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Section: Expectationsmentioning

confidence: 99%

Collaboration between doctoral researchers and patient research partners: reflections and considerations

Jones

Hunt

2022

Research for All

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“…As citizens, patients and family members take on numerous and expanding advisory and leadership roles in health system organizations, attention has turned to evaluating these efforts. Though the underlying goals for evaluation may differ, there is broad consensus about the need for stronger evidence to understand which engagement approaches work best, in which contexts and with what effects .…”

Section: Introductionmentioning

confidence: 99%

Supporting the evaluation of public and patient engagement in health system organizations: Results from an implementation research study

Abelson

Tripp

Kandasamy

et al. 2019

Health Expectations

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Background As citizens, patients and family members are participating in numerous and expanding roles in health system organizations, attention has turned to evaluating these efforts. The context‐specific nature of engagement requires evaluation tools to be carefully designed for optimal use. We sought to address this need by assessing the appropriateness and feasibility of a generic tool across a range of health system organizations, engagement activities and patient groups. Methods We used a mixed‐methods implementation research design to study the implementation of an engagement evaluation tool in seven health system organizations in Ontario, Canada focusing on two key implementation outcome variables: appropriateness and feasibility. Data were collected through respondent feedback questions (binary and open‐ended) at the end of the tool's three questionnaires as well as interviews and debriefing discussions with engagement professionals and patient partners from collaborating organizations. Results The three questionnaires comprising the evaluation tool were collectively administered 29 times to 405 respondents yielding a 52% response rate (90% and 53% of respondents respectively assessed the survey's appropriateness and feasibility [quantitatively or qualitatively]). The questionnaires' basic properties were rated highly by all respondents. Concrete suggestions were provided for improving the appropriateness and feasibility of the questionnaires (or components within) for different engagement activity and organization types, and for enhancing the timing of implementation. Discussion and Conclusions Our study findings offer guidance for health system organizations and evaluators to support the optimal use of engagement evaluation tools across a variety of health system settings, engagement activities and respondent groups.

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“…While the emergence and proliferation of this literature points to a desire to stabilize and clarify what might constitute “good PPI,” some see this proliferation as contributing to form of “busywork” which fails to challenge the power asymmetries through which broader socio-cultural inequalities enter and shape the terrain of collaboration in research and healthcare provision (Madden and Speed, 2017 ). Others have argued that clinicians' and managers expectation that patients' unique perspective can provide solutions to particular problems in research or healthcare provision, may perpetuate an extractive logic of passive patients as resources to be mined (Gilbert, 2018 ). Furthermore, while the emotional force of patient narratives is frequently noted, there is little evidence that such narratives alone can have a lasting transformative effect on clinicians' and researchers' practice (Adams et al, 2015 ).…”

Section: Introductionmentioning

confidence: 99%

Toward Co-productive Learning? The Exchange Network as Experimental Space

Matthews

Papoulias

2019

Front. Sociol.

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Policy around patient and public involvement (PPI) in the production, design and delivery of health services, and research remains difficult to implement. Consequently, in the UK and elsewhere, recent years have seen a proliferation of toolkits, training, and guidelines for supporting good practice in PPI. However, such instruments rarely engage with the power asymmetries shaping the terrain of collaboration in research and healthcare provision. Toolkits and standards may tell us little about how different actors can be enabled to reflect on and negotiate such asymmetries, nor on how they may effectively challenge what count as legitimate forms of knowledge and expertise. To understand this, we need to turn our attention to the relational dynamic of collaboration itself. In this paper we present the development of the Exchange Network, an experimental learning space deliberately designed to foreground, and work on this relational dynamic in healthcare research and quality improvement. The Network brings together diverse actors (researchers, clinicians, patients, carers, and managers) for structured "events" which are not internal to particular research or improvement projects but subsist at a distance from these. Such events thus temporarily suspend the role allocation, structure, targets, and other pragmatic constraints of such projects. We discuss how Exchange Network participants make use of action learning techniques to reflect critically on such constraints; how they generate a "knowledge space" in which they can rehearse and test a capacity for dialogue: an encounter between potentially conflictual forms of knowledge. We suggest that Exchange Network events, by explicitly attending to the dynamics and tensions of collaboration, may enable participants to collectively challenge organizational norms and expectations and to seed capacities for learning, as well as generate new forms of mutuality and care.

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Rethinking engagement

Cited by 8 publications

References 0 publications

Collaboration between doctoral researchers and patient research partners: reflections and considerations

Collaboration between doctoral researchers and patient research partners: reflections and considerations

Supporting the evaluation of public and patient engagement in health system organizations: Results from an implementation research study

Toward Co-productive Learning? The Exchange Network as Experimental Space

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