15–24.99
years) ( = 15)
Age mean (SD) = 49.7 (18.6).
Focus group and researcher interview data were recorded (either via audio recording and/or notes taken by research staff) and analyzed via a general inductive qualitative approach, a method appropriate for program evaluation studies and aimed at condensing large amounts of textual data into frameworks that describe the underlying process and experiences under study [ 12 ]. Data were analyzed by our team’s qualitative expert who read the textual data multiple times, developed a coding scheme to identify themes in the textual data, and used group consensus methods with other team members to identify unique, key themes.
Sixty-one of sixty-five PSP who volunteered to participate in the PSP survey were screened eligible, fifty were consented, and forty-eight completed the survey questionnaire. Of the 48 PSP completing the survey, 15 (32%) were AYA and 33 (68%) older adults. The mean age of survey respondents was 49.7 years, 23.5 for AYA, and 61.6 for older adults. Survey respondents were predominantly White, non-Hispanic/Latino, female, and with some college or a college degree (Table (Table1). 1 ). The percentage of participants in each group never or rarely needing any help with reading/interpreting written materials was above 93% in both groups.
Over 90% of PSP responded that they would participate in another research study, and more than 75% of PSP indicated that study participants should know about study results. Most (68.8%) respondents indicated that they did not receive any communications from study staff after they finished a study .
PSP preferences for communication channel are summarized in Table Table2 2 and based on responses to the question “How do you want to receive information?.” Both AYA and older adults agree or completely agree that they prefer email to other communication channels and that billboards did not apply to them. Older adult preferences for communication channels as indicated by agreeing or completely agreeing were in ranked order of highest to lowest: use of mailed letters/postcards, newsletter, and phone. A majority (over 50%) of older adults completely disagreed or disagreed on texting and social media as options and had only slight preference for mass media, public forum, and wellness fairs or expos.
Communication preference by group: AYA * , older adult ** , and ALL ( n = 48)
Communication format | Completely disagree | Disagree | Neutral | Agree | Completely agree | Don’t know | Not applicable |
---|---|---|---|---|---|---|---|
Phone | |||||||
AYA | 4 (26.7) | 3 (20) | 6 (40.0) | 1 (6.7) | 1 (6.7) | - | - |
Older adult | 10 (30.3) | 1 (3) | 6 (18.2) | 2 (6.1) | 14 (42.4) | - | - |
ALL | 14 (29.2) | 4 (8.3) | 12 (25.0) | 3 (9.1) | 15 (31.3) | - | - |
Mailed letters, postcards | |||||||
AYA | 5 (33.3) | 4 (26.7) | 2 (13.3) | 2 (13.3) | 2 (13.3) | - | - |
Older adult | 3 (9.1) | 2 (6.1) | 5 (15.2) | 7 (21.2) | 16 (48.5) | - | - |
ALL | 8 (16.7) | 6 (12.5) | 7 (14.6) | 9 (18.8) | 18 (37.5) | - | - |
AYA | - | - | - | 3 (20) | 12 (80) | - | - |
Older adult | 5 (15.2) | 1 (3.0) | 2 (6.1) | 2 (6.1) | 21 (63.6) | - | - |
ALL | 5 (10.4) | 1 (2.1) | 2 (4.2) | 5 (10.4) | 33 (68.8) | - | - |
Texting | |||||||
AYA | 5 (33.3) | 2 (13.3) | 2 (13.3) | 4 (26.7) | 2 (13.3) | - | - |
Older adult | 17 (51.5) | 1 (3.0) | 4 (12.1) | 3 (9.1) | 4 (12.1) | - | - |
ALL | 22 (45.8) | 3 (6.3) | 6 (12.5) | 7 (14.6) | 6 (12.5) | - | - |
Newsletter | |||||||
AYA | 5 (33.3) | 3 (20.0) | 4 (26.7) | 1 (6.7) | 2 (13.3) | - | - |
Older adult | 4 (12.1) | 2 (6.1) | 8 (24.2) | 6 (18.2) | 13 (39.4) | - | - |
ALL | 9 (18.8) | 5 (10.4) | 12(25) | 7 (14.6) | 15 (31.3) | - | - |
Social media | |||||||
AYA | 5 (33.3) | 5 (33.3) | 4 (26.7) | - | 1 (6.7) | - | - |
Older adult | 20 (60.6) | - | 4 (12.1) | 1 (3.0) | 6 (21.2) | - | - |
ALL | 25 (52.1) | 5 (10.4) | 8 (16.7) | 1 (2.1) | 7 (14.6) | - | - |
Mass media | |||||||
AYA | 3 (20.0) | 6 (40.0) | 6 (40.0) | - | - | - | |
Older adult | 14 (42.4) | 2 (6.1) | 7 (21.2) | 4 (12.1) | 6 (18.2) | - | |
ALL | 17 (35.4) | 8 (16.7) | 13 (27.1) | 4 (8.3) | 6 (12.5) | - | |
Public forum | |||||||
AYA | 5 (33.3) | 2 (13.3) | 6 (40.0) | 1 (6.7) | 1 (6.7) | ||
Older adult | 12 (36.4) | 4 (12.1) | 5 (15.2) | 6 (18.2) | 6 (18.2) | ||
ALL | 17 (35.4) | 6 (12.5) | 11 (22.9) | 7 (14.6) | 7 (14.6) | ||
Wellness fair/expo | |||||||
AYA | 4 (26.7) | 1 (6.7) | 5 (33.3) | 5 (33.3) | - | - | - |
Older adult | 12 (36.4) | 3 (9.1) | 9 (27.3) | 2 (6.1) | 7 (21.2) | ||
ALL | 16 (33.3) | 4 (8.3) | 14 (29.4) | 7 (14.6) | 7 (14.6) | - | - |
Other (billboard) | |||||||
AYA | - | - | - | - | 1 (1.67) | 3 (20.0) | 11 (73.3) |
Older adult | 2 (6.1) | - | 1(3.0) | - | 1 (3.0) | 8 (3) | - |
ALL | 2 (14.2) | - | - | 1 (2.1) | 1 (2.1) | 4 (8.3) | 39 (81.3) |
ALL, total per column.
While AYA preferred email over all other options, they completely disagreed/disagreed with mailed letters/postcards, social media, and mass media options.
When communication formats were ranked overall by each group and by both groups combined, the ranking from most to least preferred was written materials, opportunities to interact with study teams and ask questions, visual charts, graphs, pictures, and videos, audios, and podcasts.
PSP want to receive and share information on study findings for studies in which he/she participated. Furthermore, participants stated their desire to share study results across social networks and highlighted opportunities to share communicated study results with their health-care providers, family members, friends, and other acquaintances with similar medical conditions.
Because of the things I was in a study for, it’s a condition I knew three other people who had the same condition, so as soon as it worked for me, I put the word out, this is great stuff. I would forward the email with the link, this is where you can go to also get in on this study, or I’d also tell them, you know, for me, like the medication. Here’s the medication. Here’s the name of it. Tell your doctor. I would definitely share. I’d just tell everyone without a doubt. Right when I get home, as soon as I walk in the door, and say Renee-that’s my daughter-I’ve got to tell you this.
Communication of study information could happen through several channels including social media, verbal communication, sharing of written documents, and forwarding emails containing a range of content in a range of formats (e.g., reports and pamphlets).
Word of mouth and I have no shame in saying I had head to toe psoriasis, and I used the drug being studied, and so I would just go to people, hey, look. So, if you had it in paper form, like a pamphlet or something, yeah I’d pass it on to them.
PSP prefer clear, simple messaging and highlighted multiple, preferred communication modalities for receiving information on study findings including emails, letters, newsletters, social media, and websites.
The wording is really simple, which I like. It’s to the point and clear. I really like the bullet points, because it’s quick and to the point. I think the [long] paragraphs-you get lost, especially when you are reading on your phone.
They indicated a clear preference for colorful, simple, easy to read communication. PSP also expressed some concern about difficulty opening emails with pictures and dislike lengthy written text. “I don’t read long emails. I tend to delete them”
PSP indicated some confusion about common research language. For example, one participant indicated that using the word “estimate” indicates the research findings were an approximation, “When I hear those words, I just think you’re guessing, estimate, you know? It sounds like an estimate, not a definite answer.”
Twenty-three of thirty-two researchers volunteered to participate in the researcher survey, were screened eligible, and two declined to participate, resulting in 19 who provided consent to participate and completed the survey. The mean age of survey respondents was 51.8 years. Respondents were predominantly White, non-Hispanic/Latino, and female, and all were holders of either a professional school degree or a doctoral degree. When asked if it is important to inform study participants of study results, 94.8% of responding researchers agreed that it was extremely important or important. Most researchers have disseminated findings to study participants or plan to disseminate findings.
Researchers listed a variety of reasons for their rating of the importance of informing study participants of study results including “to promote feelings of inclusion by participants and other community members”, “maintaining participant interest and engagement in the subject study and in research generally”, “allowing participants to benefit somewhat from their participation in research and especially if personal health data are collected”, “increasing transparency and opportunities for learning”, and “helping in understanding the impact of the research on the health issue under study”.
Some researchers view sharing study findings as an “ethical responsibility and/or a tenet of volunteerism for a research study”. For example, “if we (researchers) are obligated to inform participants about anything that comes up during the conduct of the study, we should feel compelled to equally give the results at the end of the study”.
One researcher “thought it a good idea to ask participants if they would like an overview of findings at the end of the study that they could share with others who would like to see the information”.
Two researchers said that sharing research results “depends on the study” and that providing “general findings to the participants” might be “sufficient for a treatment outcome study”.
Researchers indicated that despite their willingness to share study results, they face resource challenges such as a lack of funding and/or staff to support communication and dissemination activities and need assistance in developing these materials. One researcher remarked “I would really like to learn what are (sic) the best ways to share research findings. I am truly ignorant about this other than what I have casually observed. I would enjoy attending a workshop on the topic with suggested templates and communication strategies that work best” and that this survey “reminds me how important this is and it is promising that our CTSA seems to plan to take this on and help researchers with this important study element.”
Another researcher commented on a list of potential types of assistance that could be made available to assist with communicating and disseminating results, that “Training on developing lay friendly messaging is especially critically important and would translate across so many different aspects of what we do, not just dissemination of findings. But I’ve noticed that it is a skill that very few people have, and some people never can seem to develop. For that reason, I find as a principal investigator that I am spending a lot of my time working on these types of materials when I’d really prefer research assistant level folks having the ability to get me 99% of the way there.”
Most researchers indicated that they provide participants with personal tests or assessments taken from the study (60% n = 6) and final study results (72.7%, n = 8) but no other information such as recruitment and retention updates, interim updates or results, information on the impact of the study on either the health topic of the study or the community, information on other studies or provide tips and resources related to the health topic and self-help. Sixty percent ( n = 6) of researcher respondents indicated sharing planned next steps for the study team and information on how the study results would be used.
When asked about how they communicated results, phone calls were mentioned most frequently followed by newsletters, email, webpages, public forums, journal article, mailed letter or postcard, mass media, wellness fairs/expos, texting, or social media.
Researchers used a variety of communication formats to communicate with study participants. Written descriptions of study findings were most frequently reported followed by visual depictions, opportunities to interact with study staff and ask questions or provide feedback, and videos/audio/podcasts.
Seventy-three percent of researchers reported that they made efforts to make study findings information available to those with low levels of literacy, health literacy, or other possible limitations such as non-English-speaking populations.
In open-ended responses, most researchers reported wanting to increase their awareness and use of on-campus training and other resources to support communication and dissemination of study results, including how to get resources and budgets to support their use.
One-on-one interviews with researchers identified two themes.
Some researchers indicated hesitancy in communicating preliminary findings, findings from small studies, or highly summarized information. In addition, in comparison to research participants, researchers seemed to place a higher value on specific details of the study.
“I probably wouldn’t put it up [on social media] until the actual manuscript was out with the graphs and the figures, because I think that’s what people ultimately would be interested in.”
Researchers expressed interest in communicating research results to study participants. However, they highlighted several challenges including difficulties in tracking current email and physical addresses for participants; compliance with literacy and visual impairment regulations; and the number of products already required in research that consume a considerable amount of a research team’s time. Researchers expressed a desire to have additional resources and templates to facilitate sharing study findings. According to one respondent, “For every grant there is (sic) 4-10 papers and 3-5 presentations, already doing 10-20 products.” Researchers do not want to “reinvent the wheel” and would like to pull from existing papers and presentations on how to share with participants and have boilerplate, writing templates, and other logistical information available for their use.
Researchers would also like training in the form of lunch-n-learns, podcasts, or easily accessible online tools on how to develop materials and approaches. Researchers are interested in understanding the “do’s and don’ts” of communicating and disseminating study findings and any regulatory requirements that should be considered when communicating with research participants following a completed study. For example, one researcher asked, “From beginning to end – the do’s and don’ts – are stamps allowed as a direct cost? or can indirect costs include paper for printing newsletters, how about designing a website, a checklist for pulling together a newsletter?”
The purpose of this pilot study was to explore the current experiences, expectations, concerns, preferences, and capacities of PSP including youth/young adult and older adult populations and researchers for sharing, receiving, and using information on research study findings. PSP and researchers agreed, as shown in earlier work [ 3 , 5 ], that sharing information upon study completion with participants was something that should be done and that had value for both PSP and researchers. As in prior studies [ 3 , 5 ], both groups also agreed that sharing study findings could improve ancillary outcomes such as participant recruitment and enrollment, use of research findings to improve health and health-care delivery, and build overall community support for research. In addition, communicating results acknowledges study participants’ contributions to research, a principle firmly rooted in respect for treating participants as not merely a means to further scientific investigation [ 5 ].
The majority of PSP indicated that they did not receive research findings from studies they participated in, that they would like to receive such information, and that they preferred specific communication methods for receipt of this information such as email and phone calls. While our sample was small, we did identify preferences for communication channels and for message format. Some differences and similarities in preferences for communication channels and message format were identified between AYA and older adults, thus reinforcing the best practice of customizing communication channel and messaging to each specific group. However, the preference for email and the similar rank ordering of messaging formats suggest that there are some overall communication preferences that may apply to most populations of PSP. It remains unclear whether participants prefer individual or aggregate results of study findings and depends on the type of study, for example, individual results of genotypes versus aggregate results of epidemiological studies [ 13 ]. A study by Miller et al suggests that the impact of receiving aggregate results, whether clinically relevant or not, may equal that of receiving individual results [ 14 ]. Further investigation warrants evaluation of whether, when, and how researchers should communicate types of results to study participants, considering multiple demographics of the populations such as age and ethnicity on preferences.
While researchers acknowledged that PSP would like to hear from them regarding research results and that they wanted to meet this expectation, they indicated needing specific training and/or time and resources to provide this information to PSP in a way that meets PSP needs and preferences. Costs associated with producing reports of findings were a concern of researchers in our study, similar to findings from a study conducted by Di Blasi and colleagues in which 15% (8 of 53 investigators) indicated that they wanted to avoid extra costs associated with the conduct of their studies and extra administrative work [ 15 ]. In this same study, the major reason for not informing participants about study results was that forty percent of investigators never considered this option. Researchers were unaware of resources available on existing platforms at their home institution or elsewhere to help them with communication and dissemination efforts [ 10 ].
Information from academic and other organizations on how to best communicate research findings in plain language is available and could be shared with researchers and their teams. The Cochrane Collaborative [ 16 ], the Centers for Disease Control and Prevention [ 17 ], and the Patient-Centered Outcomes Research Institute [ 18 ] have resources to help researchers develop plain language summaries using proven approaches to overcome literacy and other issues that limit participant access to study findings. Some academic institutions have electronic systems in place to confidentially share templated laboratory and other personal study information with participants and, if appropriate, with their health-care providers.
Findings from the study are limited by several study and respondent characteristics. The sample was drawn from research records at one university engaging in research in a relatively defined geographic area and among two special populations: AYA and older adults. As such, participants were not representative of either the general population in the area, the population of PSP or researchers available in the area, or the racial and ethnic diversity of potential and/or actual participants in the geographic area. The small number of researcher participants did not represent the pool of researchers at the university, and the research studies from which participants were drawn were not representative of the broad range of clinical and translational research undertaken by our institution or within the geographic community it serves. The number of survey and focus group participants was insufficient to allow robust analysis of findings specific to participants’ race, ethnicity, gender, or membership in the target age groups of AYA or older adult. However, these data will inform a future trial with adequate representations from underrepresented and special population groups.
Since all PSP had participated in research, they may have been biased in favor of wanting to know more about study results and/or supportive/nonsupportive of the method of communication/dissemination they were exposed to through their participation in these studies.
Our findings provide information from PSP and researchers on their expectations about sharing study findings, preferences for how to communicate and disseminate study findings, and need for greater assistance in removing roadblocks to using proven communication and dissemination approaches. This information illustrates the potential to engage both PSP and researchers in the design and use of communication and dissemination strategies and materials to share research findings, engage in efforts to more broadly disseminate research findings, and inform our understanding of how to interpret and communicate research findings for members of special population groups. While several initial prototypes were developed in response to this feedback and shared for review by participants in this study, future research will focus on finalizing and testing specific communication and dissemination prototypes aimed at these special population groups.
Findings from our study support a major goal of the National Center for Advancing Translational Science Recruitment Innovation Center to engage and collaborate with patients and their communities to advance translation science. In response to the increased awareness of the importance of sharing results with study participants or the general public, a template for dissemination of research results is available in the Recruitment and Retention Toolbox through the CTSA Trial Innovation Network (TIN: trialinnovationnetwork.org ). We believe that our findings will inform resources for use in special populations through collaborations within the TIN.
This pilot project was supported, in part, by the National Center for Advancing Translational Sciences of the NIH under Grant Number UL1 TR001450. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH.
The authors have no conflicts of interest to declare.
This study was reviewed, approved, and continuously overseen by the IRB at the Medical University of South Carolina (ID: Pro00067659). All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
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This chapter provides guidance on approaches and best practices for communicating and disseminating research findings to technical audiences via scholarly publications such as peer-reviewed journal articles, abstracts, technical reports, books and book chapters. We also discuss approaches for communicating findings to more general audiences via newspaper and magazine articles and highlight best practices for designing effective figures that explain and support the research findings that are presented in scientific and general audience publications. Research findings may also be presented verbally to educate, change perceptions and attitudes, or influence policy and resource management. Key topics include simple steps for giving effective presentations and best practices for designing slide text and graphics, posters and handouts. Websites and social media are increasingly important mechanisms for communicating science. We discuss forms of commonly used social media, identify simple steps for effectively using social media, and highlight ways to track and understand your social media and overall research impact using various metrics and altmetrics.
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Amber E. Budden & William K. Michener
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William K. Michener
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Budden, A.E., Michener, W.K. (2018). Communicating and Disseminating Research Findings. In: Recknagel, F., Michener, W. (eds) Ecological Informatics. Springer, Cham. https://doi.org/10.1007/978-3-319-59928-1_14
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Communication and Reporting of Research Findings in a research and needs your check.
British journal of community nursing, 2004
This last article of the series reviews some of the key issues that need to be considered when preparing your research findings for dissemination. Dissemination is an integral part of the research process and this article outlines some of the initial steps that need to be taken, including the establishment of agreements between authors. The importance of writing for a specific audience and how this determines the content of the report is then discussed. An overview together with guidelines on how to report qualitative and quantitative research is presented. General guidance on the choice of title, writing an abstract, listing references and acknowledgements are discussed. The article concludes with an outline of some of the key criteria editors use when reviewing a paper for publication.
This chapter begins by reinforcing the integral role of writing and dissemination in the research process, while acknowledging that writing and dissemination practices vary from discipline to discipline, field to field. Despite these differences, there are characteristics and processes that most research writing and dissemination have in common, and these are discussed here. From the general structure of a research report to the importance of writing throughout the research process, key aspects of research writing are addressed after which dissemination and publishing are defined and major and emerging forms of publication are described. The chapter concludes with a discussion of peer review and the ethics of authorship.
Academic radiology, 2014
The purpose of this study is to measure the effectiveness of a newly implemented approach to online program evaluations. This new approach will contain heavy utilization of the student learning logs. The evaluators utilized data triangulation as the program evaluation framework. Data triangulation validates data by the analysis of two or more sources (Barnes & Vidgen, 2006). The data was obtained from students enrolled in a statewide K-12 online educational institution. Data collected includes: Activity logs from the Blackboard accumulator program, student demographics, course surveys, and course engagement activity.
Research findings sometimes play a part in the policy making process. This can happen through direct use of analysis, or through their impact on public perceptions and preferences as a result of media coverage. There are opportunities in this process for distortions to occur. This paper looks at one aspect of this, namely the potential for statistical significance to be
Archivos Argentinos de Pediatria, 2013
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Journal of investigative medicine : the official publication of the American Federation for Clinical Research, 2009
Writing clearly is critical to the success of your scientific career. Unfortunately, this skill is not taught in medical school or postgraduate training. This article summarizes our approach to the writing and publication of your research. Here we focus on empirical or experimental reports of translational and clinically oriented research. We review the process of choosing what to write, how to write it clearly, and how to navigate the process of submission and publication.
Ibadan University Press eBooks, 2020
The Journal of Healthcare Ethics & Administration
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Communication Research Reports
Counseling Outcome Research and Evaluation
Canadian family physician Médecin de famille canadien, 1996
Dress, 2020
International Online Faculty Development Program On Qualitative Research – A Research with Quality, 16.05.2020 - 19.05.2020, 2020
Journal of Clinical Epidemiology, 2007
Journal of Medical Ethics, 2008
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The researcher interview guide was designed to understand researchers' perspectives on communicating and disseminating research findings to participants; explore past experiences, if any, of researchers with communication and dissemination of research findings to study participants; document any approaches researchers may have used or intend ...
Research findings are most frequently and directly communicated to one's peers via scholarly publications. These publications typically undergo peer review to assure their value and have been the traditional method of research communication since the first scientific journal, Philosophical Transactions of the Royal Society, was founded in 1665 (Kronick 1976).
James Rawson. Download Free PDF. View PDF. REPORTING AND COMMUNICATION OF FINDINGS. Keyonda Smith, PhD. The purpose of this study is to measure the effectiveness of a newly implemented approach to online program evaluations. This new approach will contain heavy utilization of the student learning logs.
This chapter of the dissertation satisfies the purpose of the research - what information the researcher set out to gather It provides information to help interpretation, discussion and arrive at conclusions. 10 CONTENT SUMMARIZED Results section should include a concise verbal or textual description of the outcome as well as quotes, tables ...
Presentation Do's in 8 minutes or less • Do introduce yourself and your team members and your project focus early in the presentation • Do establish an outline that will be used to present your research • Do highlight, summarize the process and findings from research • Do rehearse before the presentation.
Research Communication is of great value for society and future generations as the impact of it affects us all. The impact of Research Communication goes further than just explaining it, it's about building bridges between research and the public. It's about creating a mutual engagement. It's about having a conversation.
PowerPoint Presentations. Click below to view the original Powerpoint Presentation for this chapter. Chapter 1 PowerPoint (79.0K)
1. Introduction. This chapter focuses on communicating research findings, the part of the research process. where research outcomes and outputs are made public. It considers why research ...
Sourcing presentation tips from Slideshare. In presenting research to a non-academic audience, there certainly is no one-size-fits-all approach. One of the many challenges that academics and researchers may encounter within their research journey is communicating their findings in a way that guarantees nothing gets lost in translation.
Abstract. The importance of effective communication of researcher findings to the end users in advancing teaching, researcher and practice is well understood. However, there is an apparent gap ...
Institute for Science and Innovation Communication (inscico) Hohe Str 52a, 47533 Kleve / Germany Tel.: +49 2821 5908 1843; Internet: inscico.eu. com.X Institut für Kommunikations-Analyse & Evaluation Ehrenfeldstr. 34, 44789 Bochum Tel.: +49 234 325 0830; Internet: www.comx-forschung.de.
a number of different communication methods can be used to promote utilization of research findings in mental health programs: documents summarizing research information can be prepared and distributed as widely as possible; program leaders can be brought together in special regional conferences, at which research and development experts can interpret the latest research and suggest ways in ...
Research impact is an important manifestation of research competence and the focus of medical education. This study is dedicated to exploring the relationships between coauthorship networks and ...