Value of Developing Plain Language Summaries of Scientific and Clinical Articles: A Survey of Patients and Physicians

Pushparajah, Daphnee S.; Manning, Elizabeth; Michels, Erik; Arnaudeau-Bégard, Catherine

doi:10.1177/2168479017738723

Cited by 37 publications

(42 citation statements)

References 34 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…With the increased uptake of online platforms and open-access publishing, it is also likely that more patients will want to access specialized health-related information. 12 Therefore, PLS might in the future, if more ubiquitous, become vehicles that bring together HCPs, researchers, patients, caregivers, and the public.…”

Section: Introductionmentioning

confidence: 99%

“…After general internet searches (61%) and patient-specific websites (57%), articles in scientific journals (47%) were the third most important online source of health-related information for patients. 12 Of the physicians who were surveyed, 60% indicated that they would use PLS, with 46% rating PLS as valuable.…”

Section: Introductionmentioning

confidence: 99%

“…Moreover, physician interviews indicated that PLS help generate dialog with patients and streamline communication whilst saving time, as patients are not solely dependent on them for information. 12 Beyond journal article PLS, the value of summaries for lay audiences is also being evidenced by the emergence of clinical trial summaries. The European Union Trials Registration 536/2014 (Article 37) requires that a summary of clinical trial results understandable to a layperson be developed along with the clinical study report and be made publicly available on the EU database.…”

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Where are biomedical research plain‐language summaries?

FitzGibbon¹,

King

Piano³

et al. 2020

Health Science Reports

View full text Add to dashboard Cite

Background and Aims Plain‐language summaries (PLS) are being heralded as a tool to improve communication of scientific research to lay audiences and time‐poor or nonspecialist healthcare professionals. However, this relies on PLS being intuitively located and accessible. This research investigated the “discoverability” of PLS in biomedical journals. Methods The eLIFE list of journals/organizations that produce PLS was consulted on July 12, 2018, for biomedical journals (based on title). Internet research, primarily focusing on information provided by the journal websites, explored PLS terminology (what do the journals call PLS), requirements (what articles are PLS generated for, who writes/reviews them, and at what stage), and location and sharing mechanisms (where/how the PLS are made available, are they free to access, and are they visible on PubMed). Results The methodology identified 10 journals from distinct publishers, plus eLIFE itself (N = 11). Impact factors ranged from 3.768 to 17.581. Nine different terms were used to describe PLS. Most of the journals (8/11) required PLS for at least all research articles. Authors were responsible for writing PLS in 9/11 cases. Seven journals required PLS on article submission; of the other four, one required PLS at revision and three on acceptance. The location/sharing mechanism for PLS varied: within articles, alongside articles (separate tab/link), and/or on separate platforms (eg, social media, dedicated website). PLS were freely available when they were published with articles; however, PLS were only included within conventional abstracts on PubMed for 2/11 journals. Conclusion Across the few biomedical journals producing PLS, our research suggests there is wide variation in terminology, location, sharing mechanisms, and PubMed visibility. We advocate a more consistent approach to ensure that PLS have appropriate prominence and can be easily found by their intended audiences.

show abstract

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Where are biomedical research plain‐language summaries?

FitzGibbon¹,

King

Piano³

et al. 2020

Health Science Reports

View full text Add to dashboard Cite

show abstract

“…[19]. Other studies have described the development of a plain language support tool for cancer clinical trials or plain language summaries of scientific articles [23,40] and found that this could play an important role in the patient-physician dialogue. However, these studies were merely focused on patient empowerment and not directly on improving communication behavior from healthcare professionals.…”

Section: Plain-language Guide For Breast Cancer Genetic Counseling Anmentioning

confidence: 99%

Development of a plain-language guide for discussing breast cancer genetic counseling and testing with patients with limited health literacy

Giessen

Ausems

Riel

et al. 2020

Support Care Cancer

View full text Add to dashboard Cite

Purpose Due to limited health literacy and resulting ineffective communication between healthcare professionals and patients, not all eligible patients are offered breast cancer genetic counseling and testing. We aimed to develop a plain-language guide to increase effective communication about genetic counseling and testing with breast cancer patients with limited health literacy. Methods Together with oncological healthcare professionals, we drafted a list of jargon words frequently used during (breast) cancer genetic counseling. In a focus group interview with breast cancer counselees with limited health literacy, who had received genetic counseling before, we reformulated these words in plain language. Low-literate individuals, who are not familiar with breast cancer care or genetic counseling, reflected on the draft of the guide. Completeness, acceptability, and perceived usability were tested in an online questionnaire among healthcare professionals. Results The result is a plain-language guide for genetic counseling and testing with 33 frequently used jargon words and a reformulation of these words in plain language. Acceptability and perceived usefulness of the guide among healthcare professionals (n = 58) were high. Conclusion The plain-language guide provides opportunities to facilitate communication about genetic counseling and testing with patients with limited health literacy and could enhance opportunities for patients to make informed decisions to participate in genetic testing. As the intention from healthcare professionals to use the plain-language guide is high, implementation of the guide in a real-life setting seems promising.

show abstract

“…As part of its overarching patient partnering strategy for medicines development [11,13,20], UCB Pharma is now implementing the structured and systematic use of PES. Successful development and deployment of PES in selected studies could give a voice to and benefit many participants around the world.…”

Section: Introductionmentioning

confidence: 99%

Giving Voice to Clinical Study Participants: Development and Deployment of Sequential Patient Experience Surveys for Global Clinical Studies

Manning

Herndon

Frye

et al. 2020

Ther Innov Regul Sci

Self Cite

View full text Add to dashboard Cite

Background Biopharmaceutical companies are piloting patient experience surveys (PES) to help enhance patient satisfaction with clinical studies. However, most PES have been conducted at study close-out, which can hinder recall and responsiveness, and at a limited number of sites, which restricts their applicability to global studies. Our aim was to investigate the feasibility of developing sequential PES, which would be deployed globally, and to provide practical recommendations based on our real-world experience. Methods To develop sequential PES (introductory, interim, close-out), we customized a previously developed patient experience close-out survey. Extensive input was gained from multiple stakeholders (e.g., survey experts, patient advisors, psychometricians, clinical trialists, lawyers). To deploy the PES in global studies, we prepared PES-specific ethics committee submissions, training materials (e.g., slides, videos), and PES invitation aids (postcards, digital app reminders). Results Developing and deploying sequential PES in global clinical studies was feasible. The 3-part online PES (25 to 37 questions per survey) passed health literacy testing. To facilitate benchmarking, the PES included core questions (including a Net Promoter Score question). The PES gained ethics approval and was deployed globally in 2017-2018 in 12 phase 2 and 3 clinical studies in North America, Europe, and the Asia-Pacific. Based on the real-world insights gained and the challenges encountered, we have made recommendations for PES. Conclusions Our practical recommendations on the development and deployment of sequential global PES may assist others to implement PES efficiently and effectively, allowing them to gain feedback from patients globally during clinical studies.

show abstract

Value of Developing Plain Language Summaries of Scientific and Clinical Articles: A Survey of Patients and Physicians

Cited by 37 publications

References 34 publications

Where are biomedical research plain‐language summaries?

Where are biomedical research plain‐language summaries?

Development of a plain-language guide for discussing breast cancer genetic counseling and testing with patients with limited health literacy

Giving Voice to Clinical Study Participants: Development and Deployment of Sequential Patient Experience Surveys for Global Clinical Studies

Contact Info

Product

Resources

About