W hat characterises a great doctor? A list of required qualities might well include a wealth of clinical experience, brilliant diagnostic and other technical skills, and a wonderful bedside manner. Most people would hope for, or even expect, such features in anybody labelled as an exemplary clinician. But how many would suggest another, much less glamorous but essential marker—knowledgeable ignorance?

This oxymoronic term refers to an acute awareness of and readiness to admit personal and profession-wide uncertainties about key healthcare questions and dilemmas. It encapsulates an attitude seen in all the best doctors. These are the people who do not pretend to know all the answers. When out of their depth, they happily seek advice or assistance from colleagues. They look up drug doses rather than half remembering them. And, crucially, they are able to declare their ignorance to patients in ways that inspire respect rather than undermine trust and confidence.

One thing that typifies such professionals is their …

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Testing Treatments: Better Research for Better Healthcare

In line with Good Clinical Practice and the Declaration of Helsinki, it is the investigator’s responsibility to ensure that research participants are sufficiently informed, to enable the provision of informed consent. The Participant Information Leaflet/Informed Consent Form is key to facilitating this communication process. Although studies have indicated that clinical research Participant Information Leaflets/Informed Consent Forms are not optimal in terms of accessibility, there is little or no specific guidance available. The aim of this research was to propose and agree a set of guidelines for academic researchers and sponsors for preparing accessible and understandable Participant Information Leaflets/Informed Consent Forms. A literature review identified guidance for the preparation of patient-facing documents. Following critical appraisal, key recommendations were extracted and a set of recommendations which can be applied to clinical research Participant Information Leaflets/Informed Consent Forms were prepared. These recommendations were evaluated and amended by an Expert Consensus Conference consisting of a group of key stakeholders. The stakeholders included members of a Research Ethics Committee (both lay and expert), a patient advocate, experienced clinical researchers, a plain English editor and a Data Protection Officer. Consensus was reached regarding a final set of recommendations. 44 recommendations were agreed upon and grouped into five categories: Layout, Formatting, Content, Language and Confirming Readability. These recommendations aimed to maximize accessibility for lay participants, including readers with dyslexia, literacy or numeracy challenges, thereby improving the quality of the consent process. More empirical research is needed to further improve the informed consent process for research participants. However, these recommendations are informed by the current literature and have been ratified by expert stakeholders. It is hoped that these recommendations will help investigators and sponsors to consistently and efficiently produce more accessible clinical research Participant Information Leaflets/Informed Consent Forms. Researchers must make sure that research participants are given all of the relevant information about a research study or trial. This information helps research people to decide if they wish to take part. The Participant Information Leaflet/Informed Consent Form is an important source of information for potential research participants and their families and friends. However, Participant Information Leaflets/Informed Consent Forms are often not easy for lay readers to understand. They can be especially difficult for readers with dyslexia or those who have problems with reading, or understanding numbers. There are guidelines available for designing information leaflets for lay readers, for example, leaflets about medicines or different health problems. But it would be helpful for researchers if these guidelines were applied to clinical research Participant Information Leaflets/Informed Consent Forms. We searched for and gathered guidance for designing and writing information leaflets for adult, lay readers and checked to see if the sources of the guidance were reliable. We then put together some recommendations for designing and writing information leaflets for research studies or trials. We formed an expert group, made up of both laypersons and researchers, who reviewed and discussed these recommendations. The expert group agreed on a final set of recommendations. We hope that these recommendations will help researchers to prepare Participant Information Leaflets/ Informed Consent Forms that are consistently easier to for participants to read and understand.

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Preparing accessible and understandable clinical research participant information leaflets and consent forms: a set of guidelines from an expert consensus conference

Strategies for communicating scientific evidence on healthcare to managers and the population: a scoping review

Research for All is dedicated to research that involves universities and communities, services or industries working together. The aim of these different groups working together is not only to share existing knowledge held by each of them, but also to build on existing knowledge in ways that groups of similar people struggle to do alone. Our own knowledge is always partial, with gaps and preferences that may differ from the gaps experienced and preferences held by other people. Bringing together people with different perspectives not only allows learning from each other, but also allows learning that is new to everyone involved. A first step is recognizing that each of us has our own way of looking at issues, and we may each be missing out if we do not enquire about how other people see them. Thinking about our different perspectives, blind spots and potential for learning together can be prompted by the visual model of the Johari window (Luft, 1961), named after its creators, Joseph Luft and Harrington Ingram. The Johari window was originally designed to encourage self-awareness and communication about behaviour. Rather than use it to investigate knowledge about ourselves as individuals, we have adapted it to analyse knowledge (and assumptions) about our world accrued from the perspectives open to different groups of people (see Figure 1). Instead of considering what is ‘known to self’ and ‘known to others’, which makes the Johari window helpful in psychology, we can consider what is ‘known to us’ and ‘known to others’ when thinking about research as a collective activity. Another change to the original model is recognizing that what is seen from multiple standpoints may be different yet equally important. Thus, analysing these differences may start with ‘us the researchers’ or ‘us the community’ or ‘us the service providers’ or ‘us the policymakers’ or ‘us the practising artists’ or ‘us the volunteers’, and so on, depending on the situation.

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Editorial: Looking through the Johari window

Background: The Informed Health Choices (IHC) Key Concepts is a framework that provides a basis for developing educational resources and evaluating people’s ability to think critically about health actions. We developed the original Key Concepts framework by reviewing texts and checklists for the public, journalists, and health professionals and collecting structured feedback from an international advisory group. We revised the original 2015 framework yearly from 2016 to 2018 based on feedback and experience using the framework. The objectives of this paper are to describe the development of the framework since 2018 and summarise their basis. Methods: For the 2019 version, we responded to feedback on the 2018 version. For the current 2022 version, in addition to responding to feedback on the 2019 version, we reviewed the evidence base for each of the concepts. Whenever possible, we referenced systematic reviews that provide a basis for a concept. We screened all Cochrane methodology reviews and searched Epistemonikos, PubMed, and Google Scholar for methodology reviews and meta-epidemiological studies. Results: The original framework included 32 concepts in six groups. The 2019 version and the current 2022 version include 49 concepts in the same three main groups that we have used since 2016. There are now 10 subgroups or higher-level concepts. For each concept, there is an explanation including one or more examples, the basis for the concept, and implications. Over 600 references are cited that support the concepts, and over half of the references are systematic reviews. Conclusions: There is a large body of evidence that supports the IHC key concepts and we have received few suggestions for changes since 2019.

Key concepts for informed health choices: Where’s the evidence?

Well-informed choices about how to improve health outcomes depend on access to reliable information, including research evidence. Many people (the public, health professionals and policymakers) have problems understanding some of the terminology used in describing evaluations of treatments.
 In this article, we describe the development of a glossary to provide plain language explanations of commonly used terms. We identified terms for inclusion in the glossary by screening multiple sources, including 14 other glossaries. Using an iterative process that included feedback and user
 testing, we designed an online glossary that is freely available at http://getitglossary.org. The glossary includes 242 commonly used terms. For each entry there is a suggested preferred term (plain language term), a short definition that can be accessed as a 'pop-up' within text, synonyms,
 a longer explanation and links to related terms. We also flag 11 terms that we advise against using because they are ambiguous or misinterpreted, with explanations of why we advise against using them. The glossary can be incorporated into documents, providing support for evidence-informed
 health-care decisions, and embedded in other websites serving a wide variety of functions.

The plain language Glossary of Evaluation Terms for Informed Treatment choices (GET-IT) at www.getitglossary.org

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The plain language Glossary of Evaluation Terms for Informed Treatment choices (GET-IT) at www.getitglossary.org