Engaging with communities, engaging with patients: amendment to the NAPCRG 1998 Policy Statement on Responsible Research With Communities: Table 1.

Allen, Michele; Salsberg, Jon; Knot, Michaela; LeMaster, Joseph W.; Felzien, Maret; Westfall, John M.; Herbert, Carol P.; Vickery, Katherine; Culhane‐Pera, Kathleen A.; Ramsden, Vivian R.; Zittleman, Linda; Martin, Ruth Elwood; Macaulay, Ann C.

doi:10.1093/fampra/cmw074

Cited by 21 publications

(29 citation statements)

References 55 publications

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“…• Conflict between patient-partners and researchers may arise. o Building an equitable relationship between researcher and patient may be challenging since they have different perspectives [9].…”

Section: Absence Of a Shared Vision Of Patient Partnershipmentioning

confidence: 99%

“…Instead they should be seen as opportunities to learn new way of thinking. Conflicts should be addressed in a manner that recognizes differences in values and skills between both sides [9,34]. • Researchers do not need to agree with patient perspective.…”

Section: Absence Of a Shared Vision Of Patient Partnershipmentioning

confidence: 99%

“…Shippee et al [6] distinguish between a passive engagement of patient in research, in which patients are research participants, and an active engagement, which corresponds to the patients-as-partner view proposed by Karazivan et al [2]. In this latter view, patient engagement initiatives aim at engaging patients through an "equitable collaboration with individuals, families and communities affected by a health topic at all stages of the research process, from conception of the study idea through dissemination of results/findings" (p. 314) [9].…”

Section: Introductionmentioning

confidence: 97%

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Partnering with patients in healthcare research: a scoping review of ethical issues, challenges, and recommendations for practice

2020

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Background: Partnering with patients in healthcare research now benefits from a strong rationale and is encouraged by funding agencies and research institutions. However, this new approach raises ethical issues for patients, researchers, research professionals and administrators. The main objective of this review is to map the literature related to the ethical issues associated with patient partnership in healthcare research, as well as the recommendations to address them. Our global aim is to help researchers, patients, research institutions and research ethics boards reflecting on and dealing with these issues. Methods: We conducted a scoping review of the ethical issues and recommendations associated with partnering with patients in healthcare research. After our search strategy, 31 peer reviewed articles published between 2007 and 2017 remained and were analyzed. Results: We have identified 58 first-order ethical issues and challenges associated with patient partnership in research, regrouped in 18 second-order ethical themes. Most of the issues are transversal to all phases and stages of the research process and a lot of them could also apply to patient-partnership in other spheres of health, such as governance, quality improvement, and education. We suggested that ethical issues and challenges of partnered research can be related to four ethical frameworks: 1) Research ethics; 2) Research integrity; 3) Organizational ethics, and 4) Relational ethics. Conclusions: We have identified numerous ethical issues associated with the recent approach of patientpartnership in research. These issues are more diverse than the issues associated with a more traditional research approach. Indeed, the current discussion on how we address ethical issues in research is anchored in the assumption that patients, as research participants, must be protected from risk. However, doing research with, and not on, the patient involves changes in the way we reflect on the ethical issues associated with this approach to research. We propose to broaden the ethical discussion on partnered research to not only rely on a research ethics framework, but to also frame it within the areas of research integrity, organizational ethics and relational ethics.

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Section: Absence Of a Shared Vision Of Patient Partnershipmentioning

confidence: 99%

Section: Absence Of a Shared Vision Of Patient Partnershipmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 97%

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Partnering with patients in healthcare research: a scoping review of ethical issues, challenges, and recommendations for practice

2020

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“…W hile the traditional approach to health research treats individuals and populations as the subjects of inquiry, community‐engaged research (CEnR) involves establishing and maintaining authentic partnerships between researchers and those who are being researched, including local community members and organizations 1‐5 . CEnR is an umbrella term used to describe a range of activities and approaches (eg, stakeholder engagement, patient engagement, public involvement, participatory action research), with community‐based participatory research (CBPR) being the longest standing and best known of these related to health 6 .…”

mentioning

confidence: 99%

“…CEnR is an umbrella term used to describe a range of activities and approaches (eg, stakeholder engagement, patient engagement, public involvement, participatory action research), with community‐based participatory research (CBPR) being the longest standing and best known of these related to health 6 . Yet, all approaches to CEnR borrow from CBPR's emphasis on community members as equal partners in many aspects of the research process, from the identification and selection of priority topics and research questions, to developing data collection materials and analytical strategies, to drafting and disseminating the publication of findings 1,5,7‐10 . In addition, CEnR often aims to build the future capacity of academic‐community partnerships by improving community members’ research literacy and researchers’ concurrent understanding of the community's history and needs 2,3,5,11 …”

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confidence: 99%

Measuring Community‐Engaged Research Contexts, Processes, and Outcomes: A Mapping Review

2020

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Community‐engaged research (CEnR) engenders meaningful academic‐community partnerships to improve research quality and health outcomes. CEnR has increasingly been adopted by health care systems, funders, and communities looking for solutions to intractable problems. It has been difficult to systematically measure CEnR's impact, as most evaluations focus on project‐specific outcomes. Similarly, partners have struggled with identifying appropriate measures to assess outcomes of interest. To make a case for CEnR's value, we must demonstrate the impacts of CEnR over time. We compiled recent measures and developed an interactive data visualization to facilitate more consistent measurement of CEnR's theoretical domains. Context Community‐engaged research (CEnR) aims to engender meaningful academic‐community partnerships to increase research quality and impact, improve individual and community health, and build capacity for uptake of evidence‐based practices. Given the urgency to solve society's pressing public health problems and increasing competition for funding, it is important to demonstrate CEnR's value. Most evaluations focus on project‐specific outcomes, making it difficult to demonstrate CEnR's broader impact. Moreover, it is challenging for partnerships to identify assessments of interest beyond process measures. We conducted a mapping review to help partnerships find and select measures to evaluate CEnR projects and to characterize areas where further development of measures is needed. Methods We searched electronic bibliographic databases using relevant search terms from 2009 to 2018 and scanned CEnR projects to identify unpublished measures. Through review and reduction, we found 69 measures of CEnR's context, process, or outcomes that are potentially generalizable beyond a specific health condition or population. We abstracted data from descriptions of each measure to catalog purpose, aim (context, process, or outcome), and specific domains being measured. Findings We identified 28 measures of the conditions under which CEnR is conducted and factors to support effective academic‐community collaboration (context); 43 measures evaluating constructs such as group dynamics and trust (process); and 43 measures of impacts such as benefits and challenges of CEnR participation and system and capacity changes (outcomes). Conclusions We found substantial variation in how academic‐community partnerships conceptualize and define even similar domains. Achieving more consistency in how partnerships evaluate key constructs could reduce measurement confusion apparent in the literature. A hybrid approach whereby partnerships discuss common metrics and develop locally important measures can address CEnR's multiple goals. Our accessible data visualization serves as a convenient resource to support partnerships’ evaluation goals and may help to build the evidence base for CEnR through the use of common measures across studies.

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Organizational Participatory Research in North America

Bush

Haggerty

Repchinsky

et al. 2018

Participatory Health Research

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Engaging with communities, engaging with patients: amendment to the NAPCRG 1998 Policy Statement on Responsible Research With Communities: Table 1.

Abstract: PR has markedly altered the manner in which primary care research is undertaken in partnership with communities and its principles and philosophies continue to offer means to assure that research results and processes improve the health of all communities.

Cited by 21 publications

References 55 publications

Partnering with patients in healthcare research: a scoping review of ethical issues, challenges, and recommendations for practice

Partnering with patients in healthcare research: a scoping review of ethical issues, challenges, and recommendations for practice

Measuring Community‐Engaged Research Contexts, Processes, and Outcomes: A Mapping Review

Organizational Participatory Research in North America

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