A practical ‘How-To’ Guide to plain language summaries (PLS) of peer-reviewed scientific publications: results of a multi-stakeholder initiative utilizing co-creation methodology | Research Involvement and Engagement | Full Text

Abstract:  Background

Peer-reviewed scientific publications and congress abstracts are typically written by scientists for specialist audiences; however, patients and other non-specialists are understandably interested in the potential implications of research and what they may mean for them. Plain language summaries (PLS)—summaries of scientific articles in easy-to-read language—are emerging as a valuable addition to traditional scientific publications. Co-creation of PLS with the intended audience is key to ensuring a successful outcome, but practical guidance on how to achieve this has been lacking.

Methods

Building on the Patient Engagement (PE) Quality Guidance previously developed by Patient Focused Medicines Development (PFMD), a multi-stakeholder working group (WG) of individuals with patient engagement experience and/or expertise in PLS was established to develop further activity-specific guidance. PLS guidance was developed through a stepwise approach that included several rounds of co-creation, public consultation (two rounds), internal review and a final external review. The iterative development process incorporated input from a wide variety of stakeholders (patient representatives, industry members, publishers, researchers, medical communications agencies, and public officials involved in research bodies). Feedback from each step was consolidated by the WG and used for refining the draft guidance. The final draft was then validated through external consultation.

Results

The WG comprised 14 stakeholders with relevant experience in PE and/or PLS. The WG developed a set of 15 ethical principles for PLS development. These include the necessity for objective reporting and the absence of any promotional intent, the need for balanced presentation, the importance of audience focus, the need to apply health literacy principles, and the importance of using inclusive and respectful language. The first public consultation yielded 29 responses comprising 478 comments or edits in the shared draft guidance. The second public consultation was an online survey of 14 questions which had 32 respondents. The final ‘How-To’ Guide reflects feedback received and provides a rational, stepwise breakdown of the development of PLS.

Conclusions

The resulting ‘How-To’ Guide is a standalone, practical, ready-to-use tool to support multi-stakeholder co-creation of PLS.

Open Science for Non-Specialists: Making Open Science Meaningful Beyond the Scientific Community | Philosophy of Science | Cambridge Core

Abstract:  A major goal of the open science movement is to make more scientific information available to non-specialists, but it has been difficult to meaningfully achieve that goal. In response, this paper argues for two steps: (1) focusing on the scientific content that is most relevant to non-specialist audiences; and (2) packaging that content in meaningful ways for those audiences. The paper uses a case study involving a major environmental health issue (namely, PFAS pollution) to illustrate how the proponents of open science can work with groups like government agencies, nongovernmental organizations, and extension programs to implement these two steps.

 

Full article: Putting plain language summaries into perspective

“Thanks to the open science movement, and especially open access publishing, it is becoming easier for readers outside of large research institutions to access research articles for free. The proportion of research articles that are openly available has been increasing year over year1. This increase in open access has removed one important barrier to accessing research information. However, another key barrier to access is understanding. After all, what is the point of research information being openly available if only a tiny proportion of the people who have access to it can understand the technical language it’s written in? …”

 

Data Policies and Principles

“Recognizing the crucial role of open and effective data and information exchange to the Belmont Challenge, the Belmont Forum adopted open Data Policy and Principles based on the recommendations from the Community Strategy and Implementation Plan (CSIP) at its 2015 annual meeting of Principals in Oslo, Norway. The policy signals a commitment by funders of global environmental change research to increase access to scientific data, a step widely recognized as essential to making informed decisions in the face of rapid changes affecting the Earth’s environment….

Data should be:

 

Discoverable through catalogues and search engines
Accessible as open data by default, and made available with minimum time delay
Understandable in a way that allows researchers—including those outside the discipline of origin—to use them
Manageable and protected from loss for future use in sustainable, trustworthy repositories…

Research data must be:

Discoverable through catalogues and search engines, with data access and use conditions, including licenses, clearly indicated. Data should have appropriate persistent, unique and resolvable identifiers.
Accessible by default, and made available with minimum time delay, except where international and national policies or legislation preclude the sharing of data as Open Data. Data sources should always be cited.
Understandable and interoperable in a way that allows researchers, including those outside the discipline of origin, to use them. Preference should be given to non-proprietary international and community standards via data e-infrastructures that facilitate access, use and interpretation of data. Data must also be reusable and thus require proper contextual information and metadata, including provenance, quality and uncertainty indicators. Provision should be made for multiple languages.
Manageable and protected from loss for future use in sustainable, trustworthy repositories with data management policies and plans for all data at the project and institutional levels. Metrics should be exploited to facilitate the ability to measure return on investment, and can be used to implement incentive schemes for researchers, as well as provide measures of data quality.
Supported by a highly skilled workforce and a broad-based training and education curriculum as an integral part of research programs. …”

Guest Post – Towards Standardizing Plain Language Summaries: The Open Pharma Recommendations – The Scholarly Kitchen

“Plain language summaries (PLS) of peer-reviewed medical journal publications are summaries of a piece of published literature that simplify highly-specialized terminology and jargon into language everyone can understand. PLS are intended for everyone engaging with medical research, such as patients, patient advocates, caregivers, healthcare professionals and policymakers. Frequently, they are brief, text-based lay abstracts formatted like, and hosted alongside, the scientific abstract. However, consensus on industry standards for PLS is still in its infancy, so other formats in use across the industry include multi-page visual infographics and digital enhancements, usually hosted in the supplementary materials or on third-party websites….

Why write a PLS?

Open science is a human right. Article 27 of the Universal Declaration of Human Rights states that “Everyone has the right freely to […] share in scientific advancement and its benefits”. The concept of open science as it relates to financial availability and open access publishing is already well established, and its principles can be seen in action in the likes of preprints, open source data sets, and open peer review reports, among others….

Accessible open science improves trust and transparency. At a time when public trust in the pharmaceutical industry is low, transparency is more important than ever, and what’s more transparent than sharing accurate and credible research directly with the public, in language they can understand?…

Our recommendations also call for PLS that are directly discoverable and findable instead of being buried in supplementary materials or multiple clicks away on third-party websites. PubMed is one of the most widely-used public databases of medical literature and already has an built-in function for hosting PLS. To be indexed on PubMed, a PLS needs to be text-based, 250 words or less, and tagged accordingly when uploaded by publishers. Therefore, the Open Pharma recommendations advise that PLS should meet these technical requirements. We do recognize, however, that PubMed is not an ideal platform for all stakeholders, and we would welcome future development of a central database for PLS that can match PubMed’s discoverability while providing more options for different content formats, such as infographics and videos to increase understanding and engagement….”

Plain?language summaries: An essential component to promote knowledge translation – Gudi – – International Journal of Clinical Practice – Wiley Online Library

Abstract:  In this era of evidence?based practice, scholarly work such as peer?reviewed scientific publications plays a vital role in policy and decision?making at an individual, organisation and country?level. Alongside being considered an essential means of communicating scholarly work, scientific publications also investigate the specific domains that lack well?established literature and thereby inform scientists and researchers to thrive for the betterment of the publics’ well?being. Thus, the main purpose of articulating the scientific, scholarly work should be to make it understandable and accessible to everyone, including the lay audience. However, oftentimes, researchers overlook the lay summaries while publishing the research findings.

 

 

Introducing the Open Pharma recommendations for multi-stakeholder plain language summaries of publications: now inviting public consultation – Open Pharma – Innovations in medical publishing

“Over the last few months, the Open Pharma Accessibility workstream has been hard at work, drafting our recommendations for the ‘minimum standard’ for multi-stakeholder plain language summaries of publications. These recommendations were the focus of the January 2021 Roundtable, during which we heard feedback on the recommendations from Open Pharma Members, Supporters and key Advisers.

Now, we’re asking for your input! The one-page recommendations document is available to read on our figshare page. If you have any thoughts, questions or comments, or if you just want your voice to be heard, you can email us at OxfordProject@pharmagenesis.com or join the conversation on Twitter. Please make sure to share your insights before the end of the consultation period on 31 March 2021!…”

On COVID-19, cognitive bias, and open access | PNAS

“The scientific literature, with its impenetrable jargon, field-specific methodologies, and assumptions of familiarity with a specific body of knowledge, is, for the most part, written for trained scientist readers. It’s certainly not optimally designed for the casual nonspecialist reader, nor should it be, and correcting biases in occasional readers of the scientific literature has not traditionally been the responsibility of the scientific community. The move toward open access publishing, however, in a way, is making it our responsibility, particularly if the idea is that the general public, having provided the means for federal funding of research, is owed immediate access to the products of that research. Making the scientific literature widely and immediately available probably should bring with it an obligation for making not just the data accessible but every aspect of scientific research more accessible….

One small step toward increasing the accessibility of data might be recognizing and addressing potential cognitive biases in an expanded version of a “significance statement,” an element that is appearing in an increasing number of scientific papers….

Today, instructions to authors specify that the Significance Statement should “explain the significance of the research at a level understandable to an undergraduate-educated scientist outside their field of specialty…..

As open access publication becomes the norm across the publishing landscape, making data more accessible while at the same time anticipating and making a greater effort to correct potential cognitive biases may be among many tools that the scientific community can use to reduce the likelihood of misperceptions that can lead to widespread rejection of policies and recommendations based on solid scientific evidence, a cultural phenomenon that appears to have grown as exponentially as COVID-19 in the United States in 2020….”

Open access to health and education research outside academia: perspectives of research users, research intermediaries and researchers – White Rose eTheses Online

Abstract:  The thesis investigates how publics outside academia engage with ideas of open access (OA) to research publications. To do this, it analyses data from interviews with users of health and education research in two non-academic contexts, as well as with researchers interested in communicating their work to wider audiences. It draws on constructivist grounded theory (Charmaz, 2006) and situational analysis (Clarke, 2005). The literature review highlighted a need to empirically explore OA outside academia. The study focused on the ways in which publications were accessed and used outside academia and the factors enabling and preventing access. It also explored perceptions of OA within a wider context of communicating research to non- academic audiences, and identified areas of contestation. The study found that there was a demand for OA, although the demand was perceived to be limited. There were significant sources of friction in accessing research publications, including paywalls, which could be circumvented through file/password sharing and drawing on contacts. Conceptual access (e.g. understandability) was also found to prevent engagement with research publications in some cases, although this varied according to levels of expertise. The study identified research intermediaries as playing an important dual role, as they accessed research in order to make it accessible to a wider audience. The study found a disconnect between some OA advocacy and research-user perceptions. and a disconnect between researchers’ commitment to communicating their work outside the academy and their support of OA. Attitudes towards OA were influenced by bureaucratic mandates, high APCs and belief that there would be little demand for their research. Findings indicated however, that OA could complement other forms of research communication in specific contexts. Finally, the study suggested that a narrow focus on ‘tangible outcomes’ for non- academic publics (Moore, 2019) risked obscuring attempts to develop a more equitable scholarly communications system.

 

Global trends in open access publication and open data – Mills – 2020 – Journal of Applied Clinical Medical Physics – Wiley Online Library

“This Editorial will summarize some of the recent tendencies of publication explored in a recent Wiley Society Newsletter on the open access movement: http://s1133198723.t.en25.com/e/es?s=1133198723&e=6599750&elqTrackId=be52ad97a9d24b6c8db9974cd2051faf&elq=fef810d97dae4c9c9b098792bf9de575&elqaid=48002&elqat=1 . As it turns out, in a recent survey about Society Publications, Wiley determined that no?cost or open access to Society content is the top desire for most researchers. They also found that making journal articles more accessible to nonacademic audiences, greater transparency around peer review, and improving how we measure the impact of research are also highly important. https://www.wiley.com/network/societyleaders/member?engagement/members?say?open?data?is?more?important?now?than?it?was?12?months?ago?elq_mid=48002&elq_cid=12309687&utm_campaign=30355&utm_source=eloquaEmail&utm_medium=email&utm_content=Email%206?RC?SOCM?MS?XX?Global?W26M4?October%20Newsletter.

While three?quarters of members are mostly satisfied with the access to society content that they personally receive as members, only a little more than half are happy with their society’s engagement with open access publishing….”

Galileo and open access

“In writing down their discoveries, Galileo and his contemporaries created the beginnings of the system of scientific correspondence that we know today as scientific journals, where discoveries are openly described by their methods, results, and possible shortfalls. This was quite a contrast to the gnomic writings of alchemists, who cloaked their recipes in mythological allusions and double-talk. The open discourse of the scientific enterprise is one of the abiding gifts of the Renaissance. (Although it is worth noting that Galileo resorted to scrambling news of his findings in code in letters to Kepler.) …”

Science is getting harder to read | Nature Index

“From obscure acronyms to unnecessary jargon, research papers are increasingly impenetrable – even for scientists….

Kipling Williams, a psychologist at Purdue University in West Lafayette, Indiana, who has written about jargon and acronyms hampering science communication, says the increase in technical language only isolates non-specialist readers. 

He adds that academic papers should be written in a more accommodating way for informed readers who are not researchers, such as policymakers, journalists, and patients.

“The public is paying for a lot of this research, and so they should be able to at least get a reasonable handle on what’s being said.” ”

Editorial: ‘Jargon’ in scholarly and public science communication – Hans Peter Peters, 2020

“Yet, accessibility [intelligibility] of scholarly texts by interested readers outside the narrow scientific community is relevant for the widespread demand for more interdisciplinarity and the call for transdisciplinarity, transparency and open science.  Scientific jargon may be thought to facilitate efficient communication among peers who share that discipline-specific language. But the effects of jargon may go beyond that goal and serve functions of identity creation and demarcation – both of science in relation to non-science as a form of scientists’ boundary work (Gieryn) and of creating disciplinary identities within science. Such a function of jargon would actually run counter to the principles of interdisciplinarity, transdisciplinarity and open science.”

Editorial: ‘Jargon’ in scholarly and public science communication – Hans Peter Peters, 2020

“Yet, accessibility [intelligibility] of scholarly texts by interested readers outside the narrow scientific community is relevant for the widespread demand for more interdisciplinarity and the call for transdisciplinarity, transparency and open science.  Scientific jargon may be thought to facilitate efficient communication among peers who share that discipline-specific language. But the effects of jargon may go beyond that goal and serve functions of identity creation and demarcation – both of science in relation to non-science as a form of scientists’ boundary work (Gieryn) and of creating disciplinary identities within science. Such a function of jargon would actually run counter to the principles of interdisciplinarity, transdisciplinarity and open science.”

Plain Language Summary of Publication articles: helping disseminate published scientific articles to patients | Future Oncology

“Future Science Group (FSG) is keen to recognize and promote the vital role of patients in medical and scientific research, and as such, has introduced a new article type to its collection – the Plain Language Summary of Publication (PLSP). The present issue of Future Oncology features, as the first in this series, a standalone, peer-reviewed, open access PLSP article [6], which provides a visually enriched summary of a recently published research article [7]. PLSP articles are written to be read and understood by patients, patient advocates, their family members, friends and caregivers. The article will also enable other non-specialist clinicians, research scientists, decision-makers and a range of professionals in the health care community to gain an understanding of the research presented.

PLSP articles are written under the assumption that the audience has no background understanding of the study, medical terminology or clinical research in general. Each PLSP, however, will have a different style depending on the subject matter and a ‘personalized’ approach to writing each PLSP will be necessary in order to meet the educational requirements of the intended audience. For example, in the case of rare diseases, where patient readers are often well informed about the subject, a more ‘technically written’ PLSP may be considered. We recommend that all authors planning to write a PLSP first review the PLSP toolkit developed by Envision Pharma with support from PFMD, along with our own author guidelines [8]….”