Dataset Information

Adult Cancer Survivors' Engagement and Interest in Patient-Centered Research.

ABSTRACT:

Background

Limited information is available about the representativeness of survivors engaging in patient-centered research, despite the potential for threats to generalizability. We thus aimed to assess the representativeness of survivors engaged or interested in research development.

Methods

We used data from the Health Information National Trends Survey, a nationally representative survey, to identify survivors of adult cancers. Our outcomes of interest were based on responses to questions about engagement or interest in developing patient-centered research. We estimated the ratio of relative frequencies (RRF) and corresponding 95% confidence limits (CL) of sociodemographic and survivorship characteristics between survivors engaged or interested in patient-centered research and the overall survivor population.

Results

Our study population comprised 934 survivors, of whom 5% reported being engaged in patient-centered research and 26% reported an interest in participating. Relative frequencies of characteristics were discordant for engaged survivors but largely similar for interested survivors compared with all survivors. In particular, engaged survivors had a higher relative frequency of individuals ages 50 to 64 years (RRF = 1.7; 95% CL, 1.1-2.5), Hispanic (RRF = 2.9; 95% CL, 1.2-6.9), non-Hispanic Black (RRF = 2.9; 95% CL, 1.1-2.5), and unemployment (RRF = 4.7; 95% CL, 1.4-16).

Conclusions

We observed several meaningful differences in the characteristics of survivors engaged in patient-centered research compared with all survivors, which raises concerns about the generalizability of findings from such studies.

Impact

Patient-centered research may not benefit the broader survivor community if survivors engaging in research development are not representative of all survivors. Greater attention to recruiting mechanisms is necessary to avoid creating disparities.

SUBMITTER: Lubas MM

PROVIDER: S-EPMC7007350 | biostudies-literature | 2020 Feb

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Adult Cancer Survivors' Engagement and Interest in Patient-Centered Research.

Lubas Margaret M MM Lu Yan Y Gehr Aaron W AW Ghabach Bassam B Tanna Bhavna B Narra Kalyani K Brinkman Tara M TM Ojha Rohit P RP

Cancer epidemiology, biomarkers & prevention : a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology 20191118 2

<h4>Background</h4>Limited information is available about the representativeness of survivors engaging in patient-centered research, despite the potential for threats to generalizability. We thus aimed to assess the representativeness of survivors engaged or interested in research development.<h4>Methods</h4>We used data from the Health Information National Trends Survey, a nationally representative survey, to identify survivors of adult cancers. Our outcomes of interest were based on responses ...[more]

PMID: 31740520

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Project description:Introduction/objectivesThe engagement of patients and other stakeholders is a critical element in the design of patient-centered outcomes research studies. However, methodology for scalable engagement in research management particularly activities such as operationalization of principles and setting of priorities is not well-developed. The objective of this study is to describe a novel approach for scalable stakeholder engagement in research aligned with the Patient-Centered Outcomes Research Institute (PCORI) engagement principles, which was evaluated in a national clinical data research network.Materials and methodsPatient, patient advocate, clinician, and researcher stakeholders were recruited from clinical sites, as well as social media sites related to the 3 conditions of focus, heart failure, obesity, and Kawasaki disease. The engagement strategy was designed, implemented, and mapped to the PCORI engagement principles. Evaluation included internal assessment and quantitative measures of online engagement.ResultsWe operationalized the PCORI principles with 12 stakeholder engagement strategies and convened stakeholder advisory boards and online research prioritization panels to determine research priorities in a rigorous, deliberative process. A total of 46 advisors (20 patients) and 339 panelists (159 patients) actively participated. There were not significant differences between patients and clinicians in level of online engagement. Nonetheless, while patients reported a slightly greater challenge with following online discussion, they overall had a more favorable opinion about use of the online format.Discussion/conclusionAn efficient way to engage large numbers of representative stakeholders in research is a necessary first step to assure the public of trustworthy use of data networks for health research. This paper describes a comprehensive approach to engagement in patient-centered outcomes research management that informs ongoing development of rigorous methodologies in this area.

Project description:BackgroundThe richness of patients? experiences warrants thoughtful and careful examination. While standardized surveys or other structured approaches can be useful when the goal is to count or summarize relatively uncomplicated experiences, they may be less appropriate when the objective is to study sensitive topics, such as medical errors during cancer care. This abstract describes and evaluates a flexible, patient-centered approach to interviewing patients.MethodsUsing a patient-centered telephone interview guide, we interviewed cancer patients who had experienced a problem during their care. Participants were first asked to fully describe their experience; follow-up questions probed for details relevant to the study questions. Question order varied, consistent with a conversational approach. Interviews lasted 60?90 minutes and were digitally recorded. We calculated the percentage of words uttered by participants (compared to the interviewer) as a measure of participant engagement, and noted whether participants corrected the interviewer. Strengths and limitations of this approach are also identified.ResultsSeventy-eight patients were interviewed; 96% (75/78) were female, mean age was 57.7 [SD 10.6]. Overall, participants uttered an average of 77% (6,190/8,001) of the words in the interview. Participants corrected the interviewer at least once in 80% (62/78) of the interviews. Question order was flexible, and probes were used at the discretion of the interviewer. Thus, the interviewer could adapt her questioning to follow the participant?s lead, and sensitively encourage and support participants in sharing details of painful experiences. One benefit of this technique was that it allowed the interviewer to convey interest and respect, which enhanced rapport early in the interview. It also enabled participants to recall details that may otherwise have been forgotten. The drawbacks of this approach include longer interview times; discussion of unrelated topics (by participants) and increased time required for data analyses.ConclusionsPatient-centered conversational interviewing can facilitate investigation of emotionally-charged, personal experiences. This approach appears more effective than standardized interviewing techniques when the goal is to fully understand patients? experiences, such as those of cancer survivors who believe that an error occurred during their cancer care.

Project description:BackgroundPatient engagement in research is a dominant discourse in clinical research settings as it is seen as a move toward sustainable and equitable health care systems. In Canada, a key driver is the Strategy for Patient-Oriented Research of the Canadian Institutes of Health Research, which asserts that meaningful patient engagement can only be fostered when stakeholders understand its value. This study assessed researchers' perceptions of the meaning and value of patient engagement in research within a Canadian cardiovascular research network. In doing so, the secondary aim was to inform the development of a structured patient engagement initiative by identifying potential challenges and related mitigation strategies.MethodsWe employed a multi-method strategy involving electronic surveys and semi-structured telephone interviews with network research scientists across Canada. Interview data were analyzed using thematic and content analysis. Survey data were analyzed using descriptive statistics.ResultsThirty-eight electronic surveys (response rate =33%) and 16 interviews were completed with network members. Some participants were uncertain about the meaning and value of patient engagement. While voicing guarded support, four challenges relating to patient engagement were identified from the interviews: 1) identification of representative and appropriate patients, 2) uncertainty about the scope of patients' roles given concerns about knowledge discrepancies, 3) a perceived lack of evidence of the impact of patient engagement, and 4) the need for education and culture change as a prerequisite for patient engagement. Research scientists were largely concerned that patients untrained in science and tasked with conveying an authentic patient experience and being a conduit for the voices of others might unsettle a traditional model of conducting research.ConclusionConcerns about patient involvement in research were related to a lack of clarity about the meaning, process, and impact of involvement. This study highlights the need for education on the meaning of patient engagement, evidence of its impact, and guidance on practical aspects of implementation within this research community.

Dataset Information

Adult Cancer Survivors' Engagement and Interest in Patient-Centered Research.

Background

Methods

Results

Conclusions

Impact

Publications

Adult Cancer Survivors' Engagement and Interest in Patient-Centered Research.

Similar Datasets

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