Early assessment of the 10-step patient engagement framework for patient-centred outcomes research studies: the first three steps

Sofolahan-Oladeinde, Yewande; Newhouse, Robin; Lavallee, Danielle C.; Huang, Jennifer; Mullins, C. Daniel

doi:10.1093/fampra/cmx013

Cited by 19 publications

(34 citation statements)

References 9 publications

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“…Our experiences echo those of Sofolahan-Oladeinde et al, who describe positive experiences and local challenges at the start of their foray into patient engagement activities. 17 We found family engagement in deceased organ donation research faces similar challenges, such as limited time and resources, 5,12,17 as those reported in other research contexts. We also identified a new challenge posed by grief of family members with experience of deceased organ donation.…”

Section: Discussionsupporting

confidence: 56%

Engaging family partners in deceased organ donation research—a reflection on one team’s experience

Beinum

Talbot²,

Hornby

et al. 2019

Can J Anesth/J Can Anesth

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Purpose Clinical researchers are now encouraged to include patient partners in all research projects. Nevertheless, published accounts of patient engagement in complex research projects, such as those involving critically ill and dying patients, are lacking. Whether this absence is due to the relatively new emergence of patient engagement research methods or fundamental challenges regarding family engagement in challenging research contexts is unclear. We describe our experiences with forming a researcher-family partnership in a deceased organ donation research project involving the prospective observation of potential and actual deceased organ donors dying in the intensive care unit. Methods We used the Guidance for Reporting Involvement of Patients and the Public evidence-based, consensus-informed reporting guidelines to organize our narrative. Results We were able to initiate and sustain a research consultant relationship with the mother of a deceased organ donor for over two years. Challenges faced included: constraints on money and time, communication preferences, and the emotional stress of participating in difficult conversations. Positive outcomes included: improvement of data collection tools, new opportunities for access to research populations, and motivation to include family partnership in future grant proposals. Conclusions Family engagement in deceased organ donation research is feasible and contributes positively to study progress and outcomes. Patient and family engagement in challenging research contexts may require special attention to the emotional challenges of

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Section: Discussionsupporting

confidence: 56%

Engaging family partners in deceased organ donation research—a reflection on one team’s experience

Beinum

Talbot²,

Hornby

et al. 2019

Can J Anesth/J Can Anesth

View full text Add to dashboard Cite

show abstract

“…We clustered the benefits into three domains: usability benefits, societal benefits and funding benefits. Usability benefits refer to impact on the topic generation and prioritization process, for example more relevant topics and priorities based on patients’ needs and the relevance of studies, for example more relevant research questions and medical interventions or technologies . Societal benefits refer to the way public and private resources are allocated, for example more appropriate resource allocation based on patients’ needs .…”

Section: Resultsmentioning

confidence: 99%

Evaluating the “return on patient engagement initiatives” in medicines research and development: A literature review

Vat

Finlay

Schuitmaker-Warnaar

et al. 2019

Health Expectations

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Background Showing how engagement adds value for all stakeholders can be an effective motivator for broader implementation of patient engagement. However, it is unclear what methods can best be used to evaluate patient engagement. This paper is focused on ways to evaluate patient engagement at three decision‐making points in the medicines research and development process: research priority setting, clinical trial design and early dialogues with regulators and health technology assessment bodies. Objective Our aim was to review the literature on monitoring and evaluation of patient engagement, with a focus on indicators and methods. Search strategy and inclusion criteria We undertook a scoping literature review using a systematic search, including academic and grey literature with a focus on evaluation approaches or outcomes associated with patient engagement. No date limits were applied other than a cut‐off of publications after July 2018. Data extraction and synthesis Data were extracted from 91 publications, coded and thematically analysed. Main results A total of 18 benefits and 5 costs of patient engagement were identified, mapped with 28 possible indicators for their evaluation. Several quantitative and qualitative methods were found for the evaluation of benefits and costs of patient engagement. Discussion and conclusions Currently available indicators and methods are of some use in measuring impact but are not sufficient to understand the pathway to impact, nor whether interaction between researchers and patients leads to change. We suggest that the impacts of patient engagement can best be determined not by applying single indicators, but a coherent set of measures.

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“…A number of articles identified in this review note the importance of acknowledging and addressing the diversity of patient stakeholders who are engaged as partners in research, a well‐established challenge . Addressing diversity through efforts that are now emerging to help overcome the challenges can better ensure a range of voices are captured that will enhance the generalizability of the findings.…”

Section: Discussionmentioning

confidence: 99%

Patient stakeholder engagement in research: A narrative review to describe foundational principles and best practice activities

Harrison

Auerbach

Anderson

et al. 2019

Health Expectations

158

188

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Background Health research is evolving to include patient stakeholders (patients, families and caregivers) as active members of research teams. Frameworks describing the conceptual foundations underlying this engagement and strategies detailing best practice activities to facilitate engagement have been published to guide these efforts. Objective The aims of this narrative review are to identify, quantify and summarize (a) the conceptual foundational principles of patient stakeholder engagement in research and (b) best practice activities to support these efforts. Search Strategy, Inclusion Criteria, Data Extraction and Synthesis We accessed a publicly available repository of systematically identified literature related to patient engagement in research. Two reviewers independently screened articles to identify relevant articles and abstracted data. Main Results We identified 990 potentially relevant articles of which 935 (94.4%) were excluded and 55 (5.6%) relevant. The most commonly reported foundational principles were “respect” (n = 25, 45%) and “equitable power between all team members” (n = 21, 38%). Creating “trust between patient stakeholders and researchers” was described in 17 (31%) articles. Twenty‐seven (49%) articles emphasized the importance of providing training and education for both patient stakeholder and researchers. Providing financial compensation for patient stakeholders’ time and expertise was noted in 19 (35%) articles. Twenty articles (36%) emphasized regular, bidirectional dialogue between patient partners and researchers as important for successful engagement. Discussion and Conclusions Engaging patient stakeholders in research as partners presents an opportunity to design, implement and disseminate patient‐centred research. This review creates an overarching foundational framework for authentic and sustainable partnerships between patient stakeholders and researchers.

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Early assessment of the 10-step patient engagement framework for patient-centred outcomes research studies: the first three steps

Cited by 19 publications

References 9 publications

Engaging family partners in deceased organ donation research—a reflection on one team’s experience

Engaging family partners in deceased organ donation research—a reflection on one team’s experience

Evaluating the “return on patient engagement initiatives” in medicines research and development: A literature review

Patient stakeholder engagement in research: A narrative review to describe foundational principles and best practice activities

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