scholarly journals Patient and Public Involvement in Sexual and Reproductive Health: Time to Properly Integrate Citizen’s Input into Science

2020 ◽  
Vol 17 (21) ◽  
pp. 8048
Author(s):  
Miguel García-Martín ◽  
Carmen Amezcua-Prieto ◽  
Bassel H Al Wattar ◽  
Jan Stener Jørgensen ◽  
Aurora Bueno-Cavanillas ◽  
...  
Keyword(s):  
Reproductive Health ◽  
Health Research ◽  
Sexual And Reproductive Health ◽  
Public Involvement ◽  
Research Process ◽  
Patient And Public Involvement ◽  
Research Subjects ◽  
Societal Benefits ◽  
Participation Of Women ◽  
Quality Tools

Evidence-based sexual and reproductive health is a global endeavor without borders. Inter-sectorial collaboration is essential for identifying and addressing gaps in evidence. Health research funders and regulators are promoting patient and public involvement in research, but there is a lack of quality tools for involving patients. Partnerships with patients are necessary to produce and promote robust, relevant and timely research. Without the active participation of women as stakeholders, not just as research subjects, the societal benefits of research cannot be realized. Creating and developing platforms and opportunities for public involvement in sexual and reproductive health research should be a key international objective. Cooperation between healthcare professionals, academic institutions and the community is essential to promote quality research and significant developments in women’s health. This cooperation will be improved when involvement of citizens in the research process becomes standard.

scholarly journals Reporting on patient and public involvement (PPI) in research publications: using the GRIPP2 checklists with lay co-researchers

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Julia Jones ◽  
Marion Cowe ◽  
Sue Marks ◽  
Tony McAllister ◽  
Alex Mendoza ◽  
...  
Keyword(s):  
Health Research ◽  
Public Involvement ◽  
Short Form ◽  
Collaborative Study ◽  
Research Process ◽  
Patient And Public Involvement ◽  
Missed Opportunities ◽  
The Public ◽  
Research Publications ◽  
Health And Social Care

Abstract Background Patient and public involvement (PPI) in health and social care research is considered important internationally, with increasing evidence that PPI improves the quality, relevance and outcomes of research. There has been a growth in research publications that describe PPI in the research process, but the frequency and detail of PPI reporting varies considerably. This paper reports on a collaborative study that aimed to describe the extent of PPI in publications from research funded by the Collaboration for Leadership in Applied Health Research and Care (CLAHRC) in the East of England (EoE), part of the National Institute of Health Research (NIHR) in England (2014–2019). Methods A descriptive study of all research publications (1st January 2014 to 31st October 2017) funded by the NIHR CLAHRC EoE. Members of the Public Involvement in Research group (PIRg), at the University of Hertfordshire, were actively involved, with four PIRg co-researchers. We used an internationally recognised reporting checklist for PPI called the GRIPP2 (Guidance for Reporting Involvement of Patients and the Public, Version 2) to guide the reviewing process. Results Out of 148 research papers identified, 16 (14%) reported some aspect of PPI activity and were included for review. Ten of the publications (63%) acknowledged the contributions of PPI individuals and/or groups and five had PPI co-authors. There was considerable variation in the PPI reported in the publications, with some ‘missed opportunities’ to provide detail of PPI undertaken. The perspectives of the co-researchers shaped the reporting of the results from this study. The co-researchers found the GRIPP2-SF (short form) to be useful, but the GRIPP2-LF (long form) was considered over complicated and not user-friendly. Conclusions This is one of the first studies to involve lay co-researchers in the review of PPI reporting using the GRIPP2 reporting checklists (GRIPP2-SF and GRIPP2-LF). We make recommendations for a revised version of the GRIPP2-SF, with clearer instructions and three additional sections to record whether PPI is reported in the abstract or key words, in the acknowledgements section, and whether there are PPI co-authors. We also recommend the provision of training and support for patient and public peer reviewers.

scholarly journals Involving public and patients in research

2014 ◽  
Vol 96 (5) ◽  
pp. 148-149 ◽  
Author(s):  
V Kasivisvanathan ◽  
Kate Williams
Keyword(s):  
Health Research ◽  
Public Involvement ◽  
Social Care ◽  
Research Process ◽  
Patient And Public Involvement ◽  
Care Services ◽  
Health And Social Care

What does patient and public involvement (PPI) in research mean? The National Institute for Health Research (NIHR) defines ‘patient and public’ as patients, potential patients, their carers, people who use health and social care services, and organisations that represent people who use these services. 1 The term ‘involvement’ refers to an active partnership between patients and public and researchers in the research process.

Using Videoconferencing Focus Groups in Sexual and Reproductive Health Research With Chinese Im/Migrants in Australia

2021 ◽  
pp. 104973232110438
Author(s):  
Horas T. H. Wong ◽  
Defeng Jin ◽  
Pan Wang ◽  
Yingli Sun ◽  
Limin Mao ◽  
...  
Keyword(s):  
Reproductive Health ◽  
Focus Groups ◽  
Health Research ◽  
Sexual And Reproductive Health ◽  
Research Process ◽  
Lessons Learned ◽  
Face To Face ◽  
Sensitive Topics ◽  
Online Focus Groups ◽  
Technical Issues

Videoconferencing focus groups have emerged as a popular method for collecting qualitative data. However, its use in sexual and reproductive health research is still very much in its infancy. Based on participants’ feedback and researchers’ reflections on using videoconferencing focus groups to collect sexual and reproductive health data with 39 heterosexual and non-heterosexual Chinese im/migrants in Australia, we discuss some of the key lessons learned, and considerations involved in shifting from face-to-face to online focus groups. Overall, videoconferencing focus groups appeared to be a highly feasible and acceptable way to discuss “sensitive” topics with Chinese im/migrants. Importantly, researchers need to be both creative and reflexive during the research process and must not forget that the success of a study lies not only in troubleshooting technical issues but also in cultivating and maintaining a trusting relationship with research participants.

scholarly journals Collaboration with people with lived experience of prison: reflections on researching cancer care in custodial settings

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Renske Visser ◽  
Alyce-Ellen Barber ◽  
Anthony X ◽  
Sue Wheatcroft ◽  
Philip Mullen ◽  
...  
Keyword(s):  
Lived Experience ◽  
Cancer Care ◽  
Public Involvement ◽  
Research Process ◽  
Patient And Public Involvement ◽  
Third Party ◽  
Working Relationships ◽  
Care Needs ◽  
Academic Researchers ◽  
No Harm Principle

Abstract Background Patient and public involvement is increasingly considered important in health research. This paper reflects, from both academic and lived experience perspectives, on involving people with lived experience in a study exploring cancer care in prison and how by doing this it enriched the research process. Methods This paper is based on written and verbal reflections of the lived experience researchers and academic researchers involved in a study exploring the diagnosis and treatment of people with cancer in prison. The study comprised interviews with people with cancer in prison, prison healthcare staff, oncology specialists and custodial staff. Lived experience researchers were involved throughout the research process, including co-conducting interviews with patients and analysing interviews. Results This paper highlights the importance and value of including lived experience researchers across the research process. We reflect on how lived experience of prison shapes the experience of conducting interviews and analysing data gathered in prison. We reflect on the working relationships between academic and lived experience researchers. We demonstrate how prison research is challenging, but collaboration between lived experience and academic researchers can help to better prepare for the field, to ask more meaningful questions and to create rapport with participants. These types of collaborations can be powerful avenues for skill development for both academic and lived experience researchers, but they require an investment of time and a willingness for shared learning. Conclusions For academics and lived experience researchers to collaborate successfully and meaningfully care needs to be taken to develop open, honest and equal working relationships. Skills development for academic and lived experience researchers is important. A commitment to building and maintaining relationships is crucial. Having a third party as a mediator can facilitate and foster these relationships. Particularly with people with lived experience of prison it is essential to put the ‘do no harm’ principle into practice and to have support in place to minimise this.

scholarly journals Practical lessons for bringing policy-makers on board in sexual and reproductive health research

2016 ◽  
Vol 16 (1) ◽  
Author(s):  
Aurore Guieu ◽  
Wei-Hong Zhang ◽  
Yves Lafort ◽  
Peter Decat ◽  
Sara De Meyer ◽  
...  
Keyword(s):  
Reproductive Health ◽  
Health Research ◽  
Sexual And Reproductive Health ◽  
Policy Makers

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.

scholarly journals ‘I’m sure we made it a better study…’: Experiences of adults with intellectual disabilities and parent carers of patient and public involvement in a health research study

2017 ◽  
Vol 23 (1) ◽  
pp. 78-96 ◽  
Author(s):  
Carole Beighton ◽  
Christina Victor ◽  
Iain M Carey ◽  
Fay Hosking ◽  
Steve DeWilde ◽  
...  
Keyword(s):  
Intellectual Disabilities ◽  
Health Research ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Future Research ◽  
Self Confidence ◽  
The United Kingdom ◽  
Working Together ◽  
Adults With Intellectual Disabilities ◽  
Group Interviews

Patient and public involvement is considered integral to health research in the United Kingdom; however, studies documenting the involvement of adults with intellectual disabilities and parent carers in health research studies are scarce. Through group interviews, this study explored the perspectives and experiences of a group of adults with intellectual disabilities and a group of parent carers about their collaborative/participatory involvement in a 3-year study which explored the effectiveness of annual health checks for adults with intellectual disabilities. Thematic analysis identified five key themes consistent across both groups; authenticity of participation, working together, generating new outcome measures, dissemination of findings and involvement in future research. Although reported anecdotally rather than originating from the analysis, increased self-confidence is also discussed. The groups’ unique perspectives led to insights not previously considered by the research team which led to important recommendations to inform healthcare practice.

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