From Subjects to Experts—On the Current Transition of Patient Participation in Research

Johansson, Veronica

doi:10.1080/15265161.2014.900148

Cited by 16 publications

(18 citation statements)

References 7 publications

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“…Our project sought to recruit broadly while still ensuring that all co-researchers have relevant context from lived experience from which they can advise. There is however ongoing discussion around the opinions of seasoned patients who have repeatedly advised on multiple research projects (Johansson, 2014;Lough, 2015). By no fault of their own, these patients adopt vocabulary and research skills necessary to navigate the academic landscape.…”

Section: Discussionmentioning

confidence: 99%

“…By no fault of their own, these patients adopt vocabulary and research skills necessary to navigate the academic landscape. However, in doing so, it also detracts from their opinions as patientsthe perspective for which they were originally recruited (Johansson, 2014;Macaulay et al, 1998;Ocloo & Matthews, 2016). Therefore, a fine balance must be found between adequate training of patient advisors and their intrinsic ability to contribute organic viewpoints from patient experience (Bombard et al, 2018).…”

Section: Discussionmentioning

confidence: 99%

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A novel way to engage youth in research: evaluation of a participatory health research project by the international children’s advisory network youth council

Tsang

Fletcher

Thompson

et al. 2020

International Journal of Adolescence and Youth

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Background: Little is known about the impact of a participatory approach in adolescent health research and the specific benefits youth derive from such experiences. This study evaluates the benefits and limitations of involving young patients as co-researchers in the creation and execution of an international participatory health research project. Methods: Standardized feedback surveys and qualitative interviews were employed to evaluate the impact of coresearchers' personal and academic growth. Participation was determined by the percentage of youth members actively engaged (75% or more), and outcome of a completed project. Results: 16 adolescents aged 13-23 years representing 9 global academic institutions participated. Eighty-one per cent of participants reported interest in health research and 100% felt that their participation made an impact on paediatric healthcare. Discussion: The shift in roles from patient to research partner is echoed in the strong conviction of the newfound possibilities of accomplishment as a group.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

A novel way to engage youth in research: evaluation of a participatory health research project by the international children’s advisory network youth council

Tsang

Fletcher

Thompson

et al. 2020

International Journal of Adolescence and Youth

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“…on the other hand, the world of medical research has been called «a lingering bastion of medical paternalism, an ivory tower left unquestioned for too long» (Johansson, 2014). this stems from a «failure to realize or acknowledge that patients possess and can add experiences and insights that medical professionals and other involved parties lack» (ibid).…”

Section: The Possibility Of Cooperationmentioning

confidence: 99%

“…another recent example of an initiative that seems keen to engage citizens primarily to educate them and to gain acceptance for policy is the consensus research project (http:// www.consensus-project.eu/). Yet other examples of engagement are 23andMe (vayena & tasioulas, 2013), the U.S. Patient-centered outcomes research institute (Johansson, 2014), and the muscular dystrophy patients that engaged greatly in research (callon & rabeharisoa 2008). as biobanking has turned out to be expensive -both Genizon in Quebec, canada and decode Genetics in iceland have gone bankrupt-, it is not surprising that biobanks have searched widely for economic support, also from charities and the like (caulfield et al, 2014).…”

Section: The Possibility Of Cooperationmentioning

confidence: 99%

Civil society participation in the management of the common good: a case of ethics in biological resource centres

Calvo¹,

Eriksson²

2014

RPA

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La participación de la sociedad civil en la gestión del bien común: un caso en la ética de los centros de recursos biológicos Civil society participation in the management of the common good: a case of ethics in biological resource centres Patrici calvo and Stefan erikSSonUniversitat JaUme i and Uppsala University Abstract the management of commons is now at the centre of researchers' attention in many branches of science, particularly those related to the human or social sciences. this paper seeks to demonstrate how civil society participation in common goods or resources is not only possible but is also desirable for society because of the medium and long-term benefits it offers involved and/or affected parties. to this end, we examine the falsity of the discourse underlying the supposed incompetence of civil society to cooperate interpersonally in the pursuit of common objectives, and also analyse a specific example of the necessary and possible participation of civil society in managing common goods through biobanks. keywords: civil society, common godos, biobanks, ethical management.Resumen la gestión del bien común se ha convertido actualmente en centro de atención para diferentes ramas de la ciencia, especialmente aquellas vinculadas con lo humano y lo social. el presente estudio busca mostrar cómo la participación de la sociedad civil en la gestión de este tipo de bienes o recursos no sólo es posible, sino deseable para la sociedad por los beneficios que reporta a las partes implicadas y/o afectadas a medio y largo plazo. Para ello, se atenderá la falsedad del discurso sobre el cual se asienta la supuesta incompetencia de la sociedad civil para poder cooperar interpersonalmente en busca de objetivos comunes, así como se analizará un ejemplo concreto de la necesaria y posible participación de la sociedad civil en la gestión del bien común a través de los centros de recursos biológicos (brcs).Palabras clave: sociedad civil, bien común, biobancos, gestión ética.

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“…clinical trials) has been limited to the role of research 'subjects'. However, the research community is beginning to move away from seeing patients as subjects and towards recognizing them more as 'experts' [3]. Considering patients as experts is a departure from the previous dominant paradigm in which knowledge resides within the medical professions and academia, while the patient plays a passive role [4].…”

Section: Introductionmentioning

confidence: 99%

Early career researchers’ perspectives and roles in patient-oriented research

et al. 2018

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Patient-oriented research (POR) has received increasing attention in recent years. In this approach, patients' experiential knowledge, derived from their experiences of living with a condition or illness and of interacting with the healthcare system, is recognized, valued, and seen as complementary to scientific knowledge. Early career researchers (ECRs) are the next generation of researchers, but little is known about how they perceive POR. In this study, ECRs were invited to reflect on what POR is, how patients can best contribute to research, and ECRs' own role in developing POR. Using a technique designed to collect expert opinions and find consensus-the Delphi method-a panel of 16 ECRs responded, in three rounds, to three questionnaires, with the second and third being built on responses to the preceding ones. Based on their understanding, the panelists agreed that the most important element in defining POR would be valuing, mobilizing, and legitimizing the experiential knowledge of patients who live with a particular health condition. Panelists considered patients to be integral members of the research team, but were less convinced that they should be considered co-researchers. The panelists saw themselves as taking part in developing POR by sharing information, teaching, and encouraging POR among their peers, as well as by participating actively in organizations interested in POR. This is the first study to examine the perspectives of ECRs, who, along with many others, have an important role in supporting the ongoing development of POR so that it becomes more widely adopted.

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From Subjects to Experts—On the Current Transition of Patient Participation in Research

Cited by 16 publications

References 7 publications

A novel way to engage youth in research: evaluation of a participatory health research project by the international children’s advisory network youth council

A novel way to engage youth in research: evaluation of a participatory health research project by the international children’s advisory network youth council

Civil society participation in the management of the common good: a case of ethics in biological resource centres

Early career researchers’ perspectives and roles in patient-oriented research

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