What motivates patients and caregivers to engage in health research and how engagement affects their lives: Qualitative survey findings

Hemphill, Rachel C.; Forsythe, Laura P.; Heckert, Andrea; Amolegbe, Andrew; Maurer, Maureen; Carman, Kristin L.; Mangrum, Rikki; Stewart, Lisa; Fearon, Ninma; Esmail, Laura C

doi:10.1111/hex.12979

Cited by 44 publications

(74 citation statements)

References 20 publications

(62 reference statements)

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“…POs mainly concentrate on educating patients, physicians, and the community about disease and management and treatment innovation; championing and directly funding efforts to increase disease comprehension and develop new therapies; forming connections between disease key opinion leaders and drug companies; and providing drug developers with relevant insights into the patient community to facilitate the development of therapies that best meet the community’s needs [ 91 , 92 ].…”

Section: Resultsmentioning

confidence: 99%

Public Engagement and Neurology: An Update

et al. 2021

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Background: Public engagement (PE) is defined as the involvement of “specialists who listen, develop their understanding, and interact with non-specialists in non-profit activities of educational, cultural, and social nature to engage the public in science-related matters”. The public health relevance of PE consists in building up a scientifically literate society, able to participate in and support scientific and technological developments and their implications for educational settings. Neurological disorders account for 35% of all diseases. PE could have a positive impact on the lives of people affected by neurological diseases. Method: This review evaluates the role of PE in dementia, stroke, epilepsy, multiple sclerosis, Parkinson’s disease, migraine, neurogenetics, and amyotrophic lateral sclerosis. Results and Conclusions: PE can provide accessible information, support research activities and prevention through appropriate lifestyles, and increase knowledge and awareness of neurological disorders, improving their diagnosis and treatment.

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Section: Resultsmentioning

confidence: 99%

Public Engagement and Neurology: An Update

et al. 2021

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“…Similarly, it is important for patient partners, to be able to link their involvement in a given research project to its impact for their community. For instance, a recent study found that the main impetus for patient partners engagement in research is benefiting others [37]. In the case of Indigenous patient partners in our initiative, this altruistic motivation was specifically oriented towards their cultural community.…”

Section: Discussionmentioning

confidence: 95%

Engaging indigenous patient partners in patient-oriented research: lessons from a one-year initiative

et al. 2020

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Background: Patient-oriented research (POR) is a specific application of participatory research that promotes active patient engagement in health research. There is a growing concern that people involved in POR do not reflect the diversity of the population such research aims to serve, but are rather those more 'easily' engaged with institutions, organizations and society. Indigenous peoples are among such groups generally underrepresented in POR. The "Indigenous patient partners platform project" was a small-scale initiative aimed to address the issue of the underrepresentation of Indigenous people in patient-oriented research by recruiting, orienting and supporting Indigenous patient partners in Québec (Canada). This article reports on the findings of an evaluation conducted at the end of the project to garner lessons and identify strategies for engaging Indigenous patient partners in patientoriented research. Methods: The evaluation of this initiative used a case study design hinging on documentary analysis and committee member interviews. Project documents (n = 29) included agendas and meeting minutes, support documents from the orientation workshop and workshop evaluations, and tools the committee developed as part of the project. Interview participants (n = 6) were patients and organizational partners. Thematic analysis was performed by two members of the research team. Patient partners actively contributed to validating the interpretation of result and knowledge translation. Results: Results point to four key components of Indigenous patient partner engagement in POR: initiation of partnership, interest development, capacity building and involvement in research. Specific lessons emphasize the importance of community connections in recruiting, sustaining and motivating patient partners, the need to be flexible in the engagement process, and the importance of consistently valuing patient partner contributions and involvement.

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“…Patients likely experience physical or emotional impairments such as fears, grief, and anxiety while using the service [86]. All of these factors likely suggest that a particular patient's informational and decision-making needs are different from those that they would have outside of a health care context [86][87][88][89]. Patient participation and active engagement are the classic tenets of task, user, representation, and functional analysis used to inform system designers and leadership that are contemplating implementing solutions to patient-centered problems [87][88][89].…”

Section: Xsl • Fomentioning

confidence: 99%

Evaluating Patient-Centered Mobile Health Technologies: Definitions, Methodologies, and Outcomes

Bruce¹,

Harrison²,

Giammattei³

et al. 2020

JMIR Mhealth Uhealth

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Several recently published studies and consensus statements have demonstrated that there is only modest (and in many cases, low-quality) evidence that mobile health (mHealth) can improve patient clinical outcomes such as the length of stay or reduction of readmissions. There is also uncertainty as to whether mHealth can improve patient-centered outcomes such as patient engagement or patient satisfaction. One principal challenge behind the “effectiveness” research in this field is a lack of common understanding about what it means to be effective in the digital space (ie, what should constitute a relevant outcome and how best to measure it). In this viewpoint, we call for interdisciplinary, conceptual clarity on the definitions, methodologies, and patient-centered outcomes frequently used in mHealth research. To formulate our recommendations, we used a snowballing approach to identify relevant definitions, outcomes, and methodologies related to mHealth. To begin, we drew heavily upon previously published detailed frameworks that enumerate definitions and measurements of engagement. We built upon these frameworks by extracting other relevant measures of patient-centered care, such as patient satisfaction, patient experience, and patient activation. We describe several definitional inconsistencies for key constructs in the mHealth literature. In an effort to achieve clarity, we tease apart several patient-centered care outcomes, and outline methodologies appropriate to measure each of these patient-care outcomes. By creating a common pathway linking definitions with outcomes and methodologies, we provide a possible interdisciplinary approach to evaluating mHealth technologies. With the broader goal of creating an interdisciplinary approach, we also provide several recommendations that we believe can advance mHealth research and implementation.

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What motivates patients and caregivers to engage in health research and how engagement affects their lives: Qualitative survey findings

Cited by 44 publications

References 20 publications

Public Engagement and Neurology: An Update

Public Engagement and Neurology: An Update

Engaging indigenous patient partners in patient-oriented research: lessons from a one-year initiative

Evaluating Patient-Centered Mobile Health Technologies: Definitions, Methodologies, and Outcomes

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