There is a need for the authors of research reports to be able to communicate their work clearly and effectively to readers who are not familiar with the research area. Because many researchers write using technical, specialised language, particularly in scientific reports, writing Plain English summaries (PESs) can be challenging. This study looked at how to improve the quality of PESs.
The quality of the three versions (original summary, rewritten summary and edited summary) were assessed in two ways. First, a group of people who were not specialists in the subject area read and rated how easy the summaries were to understand. Secondly, a well-known measure called the Flesch reading ease score to assess how easy the PESs were to read.
The results showed that the following methods resulted in the best readable PESs:
The full article can be read online in the BioMed Central Research Involvement and Engagement Journal
Created on Thursday, 07 Sep 2017. Posted in Public Involvement
GRIPP 2 is a set of guidelines developed and agreed (via international consensus) as useful for helping researchers to report about their public involvement in journals. It is the first international effort to improve the quality and transparency of reporting about public involvement.
As such it provides researchers a useful tool when writing their application for research and dissemination strategy/impact. It also offers useful pointers about where public involvement impact on individual research studies can be reported.
A set of national, core standards and indicators for public involvement (PI) in research that can be used by organisations, research projects and individuals to improve the quality and consistency of PI has been developed. The next stage is to engage a wide range of interested groups, organisations and individuals to help review and improve the draft standards and indicators.
Created on Wednesday, 05 Jul 2017. Posted in Public Involvement
Public contributors bring a wealth of knowledge and insights to research based on their personal experiences as users of health and social care services and treatments. For example, who better to ask if a research question is relevant and important to patients and carers, than its potential beneficiaries? Or whether the frequency and timing of a series of tests proposed by researchers would actually be acceptable to the patients and carers that they plan to invite to take part in the research?
Each of our objectives are summarised in the Action Plan and cover the areas of:
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This project was commissioned by the James Lind Initiative to look at young people’s involvement in the design and delivery of NIHR studies. The report makes recommendations on how NIHR could find out more about who is involved in research and how, as well as what difference this involvement makes to research and to the young people involved.
Created on Tuesday, 13 Jun 2017. Posted in Public Involvement
Across the UK health and care sector, many thousands of people are involved as patient/public representatives. As committee members, research participants, focus group contributors and survey respondents, they offer huge amounts of time and "expertise by experience" - nearly always as volunteers.
If patient and public input to the sector's learning and development has a value, should the value be recognised? Should our volunteer contributors become paid contributors? Canada's Change Foundation has considered the issue. They recognise that payment for patient and public involvement (PPI) could undermine the ethos of volunteerism, or could engender a sense that opinions are being bought, rather than freely sought.
But they also consider the downside of volunteerism. This includes the possibility that expecting people to participate without payment could mean that low income patients are excluded from deliberation and debate. This matters in the context of health inequalities, where the most vulnerable in society are already relatively voiceless.
The authors state that they are "neither for nor against paying. Our concern is to work within the principles of fair, equitable and barrier-free public engagement". So they decide the payment issue on a case-by-case basis.
To help them do so, they have developed an easy-to-use decision tool. This sets the question of payments for PPI against parameters that guide decision makers towards a rational outcome. By using the tool, you may or may not end up paying PPI participants. But at least you'll be able to explain how you have come to your decision
Created on Wednesday, 12 Apr 2017. Posted in Public Involvement
Researchers are encouraged to involve the public as early as possible in the process of designing their studies, but this work is not subject to ethical review. This paper looks at ten areas where ethical issues may arise and has used them to develop a framework to help researchers and the public work ethically together in the early design stages.
This paper is an opinion piece informed by first-hand experiences of providing advice on involving the public as part of our National Institute for Health Research (NIHR) Research Design Service (RDS) roles. It also builds on consultations with approximately 20 lay people and 25 researchers during public involvement workshops held in the last 3 years in the East Midlands region.
Created on Wednesday, 12 Apr 2017. Posted in Public Involvement
This paper reports on setting up a training programme for lay assessors delivered collaboratively by research organisations across the East Midlands region.
A recognised method for public involvement consists of consulting with patients and the public for their views on various research materials. To support lay people to be able to carry out these tasks they require basic knowledge of how research works and to be familiar with terminology and good practice. The training programme was developed to support this learning and evolved from participant feedback and consultation.
Created on Monday, 27 Mar 2017. Posted in Public Involvement
EMAHSN run regular masterclasses on how to effectively engage underserved communities. Contact Katie Swinburn for more information.
Listen to the most recent session focusing on Gypsy Roma Traveller communities: