Patients as Research Partners; How to Value their Perceptions, Contribution and Labor?

Smith, Elise; Bélisle-Pipon, Jean-Christophe; Resnik, David B.

doi:10.5334/cstp.184

Cited by 55 publications

(51 citation statements)

References 45 publications

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“…A patient partnership model -defined here as working in collaboration with relevant patient groups as partners to develop, inform and be involved in health research, rather than a unidirectional research model with patients as participants whom data is collected on [24] -ensures that objectives and findings of subsequent studies are meaningful and responsive to patients' needs, ultimately translating into relevant policy and practice [25]. Methods of stakeholder involvement in research prioritisation, including patients, is a fast developing field.…”

Section: Background To Patient Partnership and Rationalementioning

confidence: 99%

Setting the research agenda for living with and beyond cancer with comorbid illness: reflections on a research prioritisation exercise

et al. 2020

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Background: People living with and beyond cancer are more likely to have comorbid conditions and poorer mental and physical health, but there is a dearth of in-depth research exploring the psychosocial needs of people experiencing cancer and comorbid chronic conditions. A patient partnership approach to research prioritisation and planning can ensure outcomes meaningful to those affected and can inform policy and practice accordingly, but can be challenging. Methods: We aimed to inform priorities for qualitative inquiry into the experiences and support needs of people living with and beyond cancer with comorbid illness using a partnership approach. A three-step process including a patient workshop to develop a consultation document, online consultation with patients, and academic expert consultation was carried out. The research prioritisation process was also appraised and reflected upon. Results: Six people attended the workshop, ten responded online and eight academic experts commented on the consultation document. Five key priorities were identified for exploration in subsequent qualitative studies, including the diagnostic journey, the burden of symptoms, managing medications, addressing the needs of informal carers, and service provision. Limitations of patient involvement and reflections on procedural ethics, and the challenge of making measurable differences to patient outcomes were discussed. Conclusions: Findings from this research prioritisation exercise will inform planned qualitative work to explore patients' experiences of living with and beyond cancer with comorbid illness. Including patient partners in the research prioritisation process adds focus and relevance, and feeds into future work and recommendations to improve health and social care for this group of patients. Reflections on the consultation process contribute to a broadening of understanding the field of patient involvement.

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Section: Background To Patient Partnership and Rationalementioning

confidence: 99%

Setting the research agenda for living with and beyond cancer with comorbid illness: reflections on a research prioritisation exercise

et al. 2020

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“…Patients driven research is also expanding, both online and offline, while rising a wide range of ethical concerns recently extensively reviewed by Wiggins (Wiggins and Wilbanks, 2019) based on task types and participation models. Such concerns include how to value patients' contribution (Smith et al, 2019) or how to include the needs of underserved populations (Fiske et al, 2019). Other authors also already warned about the ethical issues raised from the fact that academic and governmental research programs are embracing populist rhetoric to encourage wider public participation in biomedical Citizen Science projects, while advocating for more transparency in these projects (Woolley et al, 2016) .…”

Section: Discussionmentioning

confidence: 99%

Reformulating computational social science with citizen social science: the case of a community-based mental health care research

Bonhoure¹,

Cigarini²,

Vicens³

et al. 2019

Preprint

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“Citizen Social Science” is a fast-growing term within Citizen Science world but not many experiences have been shared in the literature to better shape its meaning. This article discusses novel possibilities of these participatory practices through the critical analysis of a concrete community-based project. We here embrace under the “Social” tag of Citizen Social Science both Computational Social Science methodologies and the Social concerns expressed by the mental health community. The interpretation place persons with a mental condition, as well as caregivers and relatives, at the center of the research cycle by taking the role of Competent Experts In-The-Field. A synergetic relation between Citizen Science, Mental Health research and Computational Social Science also imply a conceptual shift in comparison to standard approaches such as the inclusion of research subjects as active co-designers or the consideration of communitarian spaces as most natural experimental spaces. We here describe how these concepts are put into practice during the whole duration of a research project that has studied the social interactions inside the Community Mental Health Care ecosystem. Important steps entail the creation of a Knowledge Coalition, including a diversity of relevant actors with diverse knowledge and expertise, that is later involved in co-designing the research and in embedding experimental settings in communitarian spaces. The experience allows us to open a wider discussion on the possibilities and limitations of Citizen Social Science practices. Having in mind the ethical debate raised by Citizen Science Public Health and Patients’ driven research, we propose a set of values and practices to be agreed on. We also analyse the participation of the scientists in these kind of projects, which forces them to adopt the role of “camaleons” when executing diverse and versatile tasks. We additionally advocate for a more extended collective interpretation of the results in order to produce socially robust knowledge and enhance actions and policies grounded on these results. Exemplified with the experience herein presented, a more horizontal process that include the enhancement of participation and the revision of the notion of experiment offer new opportunities for Social Sciences from a multidisciplinary perspective.

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“…"The patient is everything" is the motto of the university hospital, in line with political streams of more patient-centred care regimes in Denmark and internationally (Smith et al, 2019). In conversations and interviews, most of the clinician-scientists also place patients at the core of their work.…”

Section: Patients' Arenamentioning

confidence: 99%

Reframing translational research as transactional research:

Strand¹

2019

NJSTS

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Translational research (TR) is subject to increasing attention and demand in research and health policy in the Nordic countries as well as internationally. While clinician-scientists are often positioned as key actors in both policy and academic debates on TR, less is known about the clinician-scientists’ everyday work—their practices and commitments at the interface of academia and clinical health care. Drawing on the framework of arena analysis, developed in situational analysis, this article presents an empirical exploration of the everyday practices of clinician-scientists by extending research into a Danish hospital setting. The findings shed light on hospital-based translational research as constituted by clinician-scientists’ practical integration of and transactions across many different work practice arenas. This paper depicts these arenas and the complex of commitments and capabilities involved. The analysis converges with existing Science and Technology Studies approaches to translational research as mutually reconfiguring clinical and scientific practices. In addition, it adds to this debate by providing an empirical work practice account of hospital-based TR and by suggesting a conceptual reframing of translational research as transactional research.

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Patients as Research Partners; How to Value their Perceptions, Contribution and Labor?

Cited by 55 publications

References 45 publications

Setting the research agenda for living with and beyond cancer with comorbid illness: reflections on a research prioritisation exercise

Setting the research agenda for living with and beyond cancer with comorbid illness: reflections on a research prioritisation exercise

Reformulating computational social science with citizen social science: the case of a community-based mental health care research

Reframing translational research as transactional research:

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