scholarly journals Patient engagement in fertility research: bench research, ethics, and social justice

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Perry R. Fleming ◽  
Makayla M. Swygert ◽  
Coen Hasenkamp ◽  
Jessica Sterling ◽  
Ginny Cartee ◽  
...  
Keyword(s):  
Patient Engagement ◽  
Public Involvement ◽  
Science Research ◽  
Patient And Public Involvement ◽  
Main Body ◽  
Vitro Fertilization ◽  
Unique Nature ◽  
Meaningful Engagement ◽  
Verbal Agreement

Abstract Background Patient and Public Involvement (PPI) in research is increasingly being utilized to better connect patients and researchers. The Patient Engagement Studio (PES) supports PPI in research by working directly with researchers throughout various stages of their projects. Recently, two researchers presented to the PES for assistance with their project, Embryo+™. The purpose of Embryo+™ is to decrease miscarriage rates using RNA sequencing technology that screens for the most viable embryos. To date, no examples of PPI directly in the planning or implementation of bench research concerning in vitro fertilization and embryo transfer have been identified. Main body Embryo+™ researchers met in-person with the PES two times (fall 2019; each meeting had 9 PES members in attendance) for initial feedback and protocol development. After these meetings, PES leadership and Embryo+™ researchers decided that the unique nature of the project merited a PPI evaluation. Subsequent evaluation of engagement efforts occurred by reviewing the PES reports for the Embryo+™ researchers, conducting two recorded web-based discussion meetings with the PES (summer 2020; meeting 1 n = 7; meeting 2 n = 6), and a brief survey (n = 13). The discussion meetings provided an opportunity for the PES members to define engagement themes through consensus via verbal agreement to the studio director’s periodic summaries during the discussions. Combining survey results and PES themes allowed for a broad discussion for meaningful engagement. The Embryo+™ researchers established trust with the patients by changing some of their language in response to patient suggestions, allowing for unintended ethical conversations, and implementing the patient developed protocols. Overall, the patient experts thought this project was very meaningful and valuable, quantified by a mean loyalty score 89.43 (s.d. 10.29). Conclusion Bench science researchers may need additional PPI training prior to engaging with patient groups. PPI in this project was successful in large part due to this training, where the director emphasized the importance of gaining trust with the patients. The researchers applied what they learned and several examples of how to develop trust with patients are discussed. If trust is established, PPI in an ethically charged, basic science research study can be both valuable and successful.

scholarly journals PPI in research: a reflection from early stage researchers

2019 ◽  
Vol 5 (1) ◽  
Author(s):  
Alice M. Biggane ◽  
Maria Olsen ◽  
Paula R. Williamson
Keyword(s):  
Health Research ◽  
Public Involvement ◽  
Early Stage ◽  
Training Session ◽  
Research Integrity ◽  
Round Table ◽  
Patient And Public Involvement ◽  
Main Body ◽  
Research On Research ◽  
Challenges And Opportunities

Abstract Background The importance of patient and public involvement (PPI) in the design and conduct of health research projects is gaining widespread recognition; however, it is still a developing area. Furthermore, PPI in methodological health research can help increase research value Thus, it is of great importance that researchers, especially early stage researchers continue to discuss and learn about the future challenges and opportunities of PPI. Objective With this commentary, we aim to disseminate i) key messages from a recent PPI training event and ii) discuss what early stage researchers (ESRs) in the “Methods in Research on Research” (MiRoR) project can do to improve our current and future work by considering and incorporating PPI. Main body The latest MiRoR network meeting held at the University of Split in Croatia (2nd-3rd October), included a PPI training session with presentations from Mr. Stephens a patient, about “Waste in research” and Dr. Westmore a funder on “Research integrity”, followed by smaller round-table discussions. This provided early stage researchers (ESRs) with an opportunity to discuss and explore the benefits and challenges of PPI in research, and the appropriate questions and research that is required for improving the implementation of PPI in clinical research. Conclusion As with intervention research, PPI is also important for methodological research since this will help to increase both the value, integrity and quality of research. By providing early stage researchers with appropriate educational, interactive and real-world training, this will introduce the various merits and challenges associated with PPI in early-stage research.

The challenges of patient and public involvement in medical technology and in-vitro diagnostic research

2018 ◽  
Vol 2 (2) ◽  
pp. 335-346
Author(s):  
Ijeoma Uchegbu ◽  
Momoko Sato ◽  
Alison Allam ◽  
Peter Buckle ◽  
George Hanna
Keyword(s):  
Medical Technology ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
In Vitro Diagnostic ◽  
Diagnostic Research

scholarly journals “A little (PPI) MAGIC can take you a long way” : involving children and young people in research from inception of a novel medical device to multi-centre clinical trial Roald Dahl, James and the Giant Peach (1961)

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Nichola Abrehart ◽  
◽  
Kate Frost ◽  
Roy Harris ◽  
Andrew Wragg ◽  
...  
Keyword(s):  
Young People ◽  
Medical Device ◽  
Public Involvement ◽  
Knowledge Exchange ◽  
Patient And Public Involvement ◽  
Advisory Group ◽  
Main Body ◽  
Research Project ◽  
Children And Young People ◽  
Conducting Research

Abstract Background There is often a great urgency to be inclusive when conducting research and to focus efforts with groups and communities that can be referred to as marginalised. This is especially the case in research concerning medical devices aimed at children and young people (CYP). Although involvement methodology has developed over the last two decades, it can be challenging to involve and engage CYP with confidence and clarity of purpose. Main body Our aim was to provide a reflective narrative account of the involvement of CYP, over a period of 5 years, in a research project from conception of a new paediatric medical device through to practical application. We explored a model of patient and public involvement (PPI) through the Nottingham Young Persons Advisory Group (YPAG), part of the National Institute for Health Research (NIHR) GenerationR Alliance, in a NIHR funded research project. The YPAG designed and created a model of the human gut, co-designed the Transicap™ mini-capsules and their packaging, co-produced patient information sheets, came up with the idea to disseminate through a project website and co-wrote and created animation videos. The YPAG involvement continued through the writing and award of the follow-on research grant (MAGIC2). During this process the YPAG modified the clinical study protocol insisting that all participants in the control arm were given the imaging test results as well, save for a delayed reading compared to the intervention arm. Conclusion Involvement of the YPAG over the last 5 years, led to the development of a mutually beneficial partnership, enabling genuine knowledge exchange between researchers and CYP. This influenced the design, plans and actions of the MAGIC study and well into the subsequent MAGIC2 follow-on project. Moreover, these involvement models applied within a feasibility study setting, have enhanced the realism and pragmatism of the study, contributing to the project’s overall success.

scholarly journals “PPI? That sounds like Payment Protection Insurance”: Reflections and learning from a substance use and homelessness study Experts by Experience group

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Rebecca Foster ◽  
Hannah Carver ◽  
Jason Wallace ◽  
Alex Dunedin ◽  
Stan Burridge ◽  
...  
Keyword(s):  
Substance Use ◽  
Public Involvement ◽  
Life Experiences ◽  
Patient And Public Involvement ◽  
Main Body ◽  
The Public ◽  
Harm Reduction Intervention ◽  
The Rich ◽  
The Uk ◽  
Do So

Abstract Background Patient and Public Involvement in research is important for citizenship, accountability and transparency, and has the practical benefit of helping to ensure its quality and applicability. Involving members of the public in research is becoming increasingly commonplace, in the UK and internationally. It is essential that public involvement is inclusive of individuals and their diverse life experiences, including challenging experiences that may be associated with stigma and social exclusion. The involvement of people with lived/living experience of substance use and homelessness in research is increasing in response to increased recognition of the importance of inclusion and the benefits conferred to research. Main body In this commentary, we share our own experiences of being part of a Patient and Public Involvement group that was convened during a feasibility study of a peer-delivered harm reduction intervention. We are a diverse group but share experience of the field of substance use/homelessness, as people with lived/living experience, and as researchers and practitioners. We share our reflections and learning, as well as offer recommendations for researchers working in our field. Our group worked together to make a positive and deliberate contribution to the study. This did not happen by chance but required the development of mutual trust and respect, with each member having a commitment to support the group for its two-year duration. Short conclusion It is important for researchers to appreciate that meaningful Patient and Public Involvement is very valuable but requires a commitment from all involved. Regarding our field of substance use and homelessness specifically, it is essential that people with these experiences have opportunities to contribute to research and can do so in a meaningful way. People with lived/living experience are able to bring to life the rich tapestry of others’ experiences. However, the involvement must be neither tokenistic nor indifferent to the wider challenges common to these experiences.

scholarly journals The challenges of patient and public involvement in medical technology and in-vitro diagnostic research

2018 ◽  
Vol 2 (2) ◽  
pp. 335-346
Author(s):  
Ijeoma F. Uchegbu ◽  
Momoko Sato ◽  
Alison Allam ◽  
Peter Buckle ◽  
George R. Hanna
Keyword(s):  
Medical Technology ◽  
Public Involvement ◽  
Health Care Research ◽  
Patient And Public Involvement ◽  
Technology Research ◽  
Impact Measurement ◽  
Transfer Event ◽  
Measurement Framework ◽  
In Vitro Diagnostic

Patient and public involvement (PPI) in research is defined as 'research being carried out "with" or "by" members of the public rather than "to", "about" or "for" them'. A knowledge transfer event (KTE) was planned to share the experience of organizations who carry out medical technology research. The KTE was attended by organizations with an interest in the effective application of PPI in health-care research, including organizations from academia, industry and charities. The aim was to share current PPI experience and to discuss the development of a PPI impact measurement framework to support future growth in PPI application within medical technology research.

scholarly journals What has the COVID-19 pandemic taught us about conducting patient and public involvement remotely? Insights from a series of digital meeting observations

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Elin Lampa ◽  
Björn Sonnentheil ◽  
Antónia Tökés ◽  
Georgina Warner
Keyword(s):  
Group Dynamics ◽  
Public Involvement ◽  
Text Message ◽  
Patient And Public Involvement ◽  
Vulnerable Groups ◽  
Main Body ◽  
The Media ◽  
Tone Of Voice ◽  
Observation Protocol ◽  
Trained Observers

Abstract Background During the COVID-19 pandemic many work tasks are being done remotely through digital meetings, including PPI in research. Yet, some PPI activities have been paused or cancelled altogether during the pandemic. In this commentary, we share our insights from observing digital meetings with researchers and public contributors, representing vulnerable groups. Additionally, we discuss how remote PPI activities can be understood and improved. Main body As part of a PPI evaluation project, live observations were conducted by two trained observers, using a semi‐structured observation protocol developed to objectively assess aspects of group dynamics in PPI research meetings with public contributors with experience of seeking refuge and parents facing economic hardship. This project’s data collection is ongoing and the insights in this commentary is based on the observers’ discussion. We discuss these insights through the lens of the Media Richness Theory, stating that the choice of media we communicate through should be guided by what kind of information we want to communicate to each other. The more complex the information is, the richer the media tool needs to be. For example, information in a text message is more easily misinterpreted than information given in person. This is because meeting in person gives us more information, for example through body language and tone of voice. Based on our experiences from observing digital research meetings, we give suggestions on how to improve digital meetings with public contributors. A few key points are: actively choosing which media to use; being prepared to guide contributors to the chosen media in a way that is suitable for them; and the increased importance of the person chairing the meeting to actively include all participants. Conclusions We reach the conclusion that digital meetings with public contributors is possible, but that researchers need to make a commitment and actively work to solve practical issues. Finally, the format and structure of digital meetings should be co-created together with public contributors.

scholarly journals How to Ease the Pain of Taking a Diagnostic Point of Care Test to the Market: A Framework for Evidence Development

Micromachines ◽  
2020 ◽  
Vol 11 (3) ◽  
pp. 291 ◽  
Author(s):  
Sara Graziadio ◽  
Amanda Winter ◽  
B. Lendrem ◽  
Jana Suklan ◽  
William Jones ◽  
...  
Keyword(s):  
Development Strategy ◽  
Public Involvement ◽  
Care Pathway ◽  
Point Of Care ◽  
Patient And Public Involvement ◽  
Product Management ◽  
Point Of Care Test ◽  
Value Propositions ◽  
On Line

Bringing a diagnostic point of care test (POCT) to a healthcare market can be a painful experience as it requires the manufacturer to meet considerable technical, financial, managerial, and regulatory challenges. In this opinion article we propose a framework for developing the evidence needed to support product development, marketing, and adoption. We discuss each step in the evidence development pathway from the invention phase to the implementation of a new POCT in the healthcare system. We highlight the importance of articulating the value propositions and documenting the care pathway. We provide guidance on how to conduct care pathway analysis as little has been published on this. We summarize the clinical, economic and qualitative studies to be considered for developing evidence, and provide useful links to relevant software, on-line applications, websites, and give practical advice. We also provide advice on patient and public involvement and engagement (PPIE), and on product management. Our aim is to help device manufacturers to understand the concepts and terminology used in evaluation of in vitro diagnostics (IVDs) so that they can communicate effectively with evaluation methodologists, statisticians, and health economists. Manufacturers of medical tests and devices can use the proposed framework to plan their evidence development strategy in alignment with device development, applications for regulatory approval, and publication.

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