From tokenism to meaningful engagement: best practices in patient involvement in an EU project

Supple, David; Roberts, Amanda; Hudson, Val; Masefield, Sarah; Fitch, Neil; Rahmen, Malayka; Flood, Breda; Boer, Willem de; Powell, Pippa; Wagers, Scott

doi:10.1186/s40900-015-0004-9

Cited by 78 publications

(124 citation statements)

References 16 publications

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“…Geissler, Ryll, Priolo, and Uhlenhopp () discussed the benefits of patient involvement in all stages of medicine research in Europe and emphasised it could lead to better therapies that represent patients' needs while also improving recruitment and retention in research studies and enhancing the dissemination of findings. Supple et al () also supported the active inclusion of asthma patients and carers of people with asthma in a European study looking at biomarkers in predicting respiratory diseases. Three large patient organisations received funding to work with a consortium of academic and industry partners, meaning patients were involved in all aspects of this research study.…”

Section: Discussionmentioning

confidence: 92%

Involving older people in gerontological nursing research: A discussion of five European perspectives

Blakey

Durante

Malfait

et al. 2020

Int J Older People Nursing

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| BACKG ROU N DThis exploration and discussion about involving patients and the public in gerontological nursing research, in particular doctoral training programmes, was prompted by conversations at a European summer school for doctoral nursing students. As nurses from different regions of Europe, we felt our experiences of postgraduate study and nursing scholarship had much in common. However, it also varied in some respects particularly around the approach to including patients, informal carers (family or other untrained and unpaid care providers), and the public in the research process (de Wit, Cooper, & Reginster, 2019).This raised a number of questions about how and when to incorporate this approach into doctoral training programmes across Europe with its diverse culture, healthcare and higher education systems. Our response was to come together as a group of early career researchers to review national initiatives around involving patients and the public in health research. We then identified some key literature that used this approach within gerontological nursing and critically reflected on our own experiences during our doctoral studies, which involved or had the potential to involve older people.This work is discussed, and a number of recommendations are put forward that could improve nursing science and patient care.

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Section: Discussionmentioning

confidence: 92%

Involving older people in gerontological nursing research: A discussion of five European perspectives

Blakey

Durante

Malfait

et al. 2020

Int J Older People Nursing

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“…The study team encountered many of the common challenges in forming and progressing its PPI panel [46,47]. The majority of barriers were successfully overcome with the guidance of the Jigsaw team, and group problem-solving and discussion.…”

Section: Discussionmentioning

confidence: 99%

Formation of a type 1 diabetes young adult patient and public involvement panel to develop a health behaviour change intervention: the D1 Now study

et al. 2017

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Plain English summaryMany young adults with type 1 diabetes (T1D) find it hard to control their blood glucose levels. With lots of things going on in their lives, their diabetes is often not the most important thing to them. That means they do not always take care of their T1D, for example by going to clinic appointments. Young adults with T1D do not usually get the chance to make suggestions on how to improve diabetes services. Being involved could help young adults to shape the diabetes care services that support them. Since 2014 a diabetes research team based in Galway has been looking at ways to improve how diabetes services are delivered to young adults. Eight young adults (aged 18-25 years) with T1D called the Young Adult Panel (YAP) are members of this team and have helped design the "D1 Now" intervention which aims to improve diabetes services. The YAP came up with questions to ask other young adults with T1D, their families and friends and healthcare providers about their experiences of healthcare services and how these could be improved. The YAP also shared messages from the research at national conferences and on local radio. They helped with writing sections of a grant application to take this research work forward. Our experience has shown the importance of involving young adults with T1D in helping to design research focusing on ways to improve their diabetes service that will help them and other young adults to live with diabetes in the future. O'Hara et al. Research Involvement and Engagement (2017) 3:21 DOI 10.1186/s40900-017-0068-9(Continued from previous page) Abstract Background Research indicates that young adults (18-25 year olds) with type 1 diabetes (T1D) often disengage from health services and their general diabetes management. Involving young adults with T1D in co-designing research to develop a behaviour change intervention to improve engagement with health services could potentially improve overall self management and health. A local youth mental health organisation called Jigsaw, Galway developed a very successful model for involving users in service design and development. Based on this model, the aim was to form a Young Adult Panel (YAP) of 18-25 year olds with T1D and involve them in all aspects of a study to develop an intervention to improve health and wellbeing for young adults with T1D called D1 Now.Methods Recruitment of young adults was achieved through a multimedia campaign. A consultation event was organised, followed by interviews with interested young adults. A panel of 8 members was selected. Following initial training for YAP members in committee skills and an introduction to different research methods and terms, YAP members participated in different stages of the research process. They were represented on the research study steering group and attended research meetings. They developed research materials, reviewed and interpreted research findings and helped develop the online platform to enhance engagement between young adults and their diabetes healthcare providers....

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“…In the United States, the Agency for Health care Research and Quality in the US states that the involvement of stakeholders from the beginning improves research results and ‘helps to ensure that findings are more relevant to users’ distinct concerns and have applications in real‐world situations . In Europe, the U‐BIOPRED (Unbiased Biomarkers in Prediction of Respiratory Disease Outcomes) project, funded by the Innovative Medicines Initiative and involving patients throughout, identified five key principles for the success of patient engagement in health research including: early involvement; deep involvement; feedback from patients on the project process; inclusion of patients in dissemination; helping patients convey their own story …”

Section: Introductionmentioning

confidence: 99%

“…4 In Europe, the U-BIOPRED (Unbiased Biomarkers in Prediction of Respiratory Disease Outcomes) project, funded by the Innovative Medicines Initiative and involving patients throughout, identified five key principles for the success of patient engagement in health research including: early involvement; deep involvement; feedback from patients on the project process; inclusion of patients in dissemination; helping patients convey their own story. 5 In research, the importance of PPI is becoming widely recognised, with some funders making it a requirement to obtain funding, for example the National Institute for Health Research (NIHR) for patient benefit funding stream. The NIHR website 6 states 'We expect researchers to actively involve the public in their research.…”

Section: Introductionmentioning

confidence: 99%

Development and testing of a medline search filter for identifying patient and public involvement in health research

Rogers

Bethel

Boddy

2017

Health Info Libraries J

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BackgroundResearch involving the public as partners often proves difficult to locate due to the variations in terms used to describe public involvement, and inability of medical databases to index this concept effectively.ObjectiveTo design a search filter to identify literature where patient and public involvement (PPI) was used in health research.MethodsA reference standard of 172 PPI papers was formed. The references were divided into a development set and a test set. Search terms were identified from common words, phrases and synonyms in the development set. These terms were combined as a search strategy for medline via OvidSP, which was then tested for sensitivity against the test set. The resultant search filter was then assessed for sensitivity, specificity and precision using a previously published systematic review.ResultsThe search filter was found to be highly sensitive 98.5% in initial testing. When tested against results generated by a ‘real‐life’ systematic review, the filter had a specificity of 81%. However, sensitivity dropped to 58%. Adjustments to the population group of terms increased the sensitivity to 73%.ConclusionThe PPI filter designed for medline via OvidSP could aid information specialists and researchers trying to find literature specific to PPI.

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From tokenism to meaningful engagement: best practices in patient involvement in an EU project

Cited by 78 publications

References 16 publications

Involving older people in gerontological nursing research: A discussion of five European perspectives

Involving older people in gerontological nursing research: A discussion of five European perspectives

Formation of a type 1 diabetes young adult patient and public involvement panel to develop a health behaviour change intervention: the D1 Now study

Development and testing of a medline search filter for identifying patient and public involvement in health research

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