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Patient engagement with research: European population register study.

McKevitt, C., Fudge, N., Crichton, S., Bejot, Y., Daubail, B., DiCarlo, A., ... Wolfe, C.D.A. (2015). Health Expectations. [E-Pub ahead of print.] doi:10.1111/hex.12315

This cross sectional survey-study assessed the research awareness among patients who were participating in a population-based stroke registry in six European cities. As such, it provides Level IV research data (Polit & Beck, 2012). Recognizing that research participation, including Institutional Review Board approval and consenting processes, differ from those required in the U.S., the premise for the study is interesting, and generalizable. Data were collected from 481 patients who were registered as stroke patients and receiving care at a study site. Registering, in this circumstance, includes study participation consent. The response rate for the study was 74%, which is excellent. The survey was study-specific; developed by adapting previous questionnaires and adding research-specific items. Once developed, the survey was validated through the use of focus groups and pilot testing. These activities resulted in a 14-item survey, covering four domains posited to influence participation in a research study.

When describing their motivation for participating in a research study, the most frequent response was simply that the clinician provided the opportunity. Altruism, encouragement from a patient association, and the desire to obtain additional health services were the other motivating variables. However, 20% of these participants were not aware that they were participating in a research study; 57% could not describe the purpose of the registry to which they had been recruited. Additionally, 73% of the respondents reported not receiving any study results from their participating registry. Over half of these participants stated that they had not had opportunities to learn about stroke research; 60% reported never reading or knowing anything about stroke research results. The most interesting result concerns who should make decisions about research participation; 74% of all respondents identified health care professionals, 62.6% identified scientists or researchers, only 33.5% of these participants included stroke patients in the decision-making process.

Although these individuals provided appropriate consent, few participants were aware they were taking part in a research study. While consenting procedures are specific to each country, these participants reported not receiving study results or opportunities, such as stroke education, that are a part of the research. Replication of this study using research participants within the U.S. would be interesting. There appears to be a gap in our knowledge regarding research awareness among study participants and their motivation toward participation.

doi: 10.7257/1053-816X.2015.35.3.143

Peggy Ward-Smith, PhD, RN, is Director, Faculty Center for Excellence in Teaching (FaCET), University of Missouri-Kansas City, and an Associate Professor, School of Nursing, University of Missouri, Kansas City, MO, and a member of the Urologic Nursing Editorial Board.

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Author:Ward-Smith, Peggy
Publication:Urologic Nursing
Article Type:Report
Geographic Code:1USA
Date:May 1, 2015
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