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.

scholarly journals How embedded is public involvement in mainstream health research in England a decade after policy implementation? A realist evaluation

2018 ◽  
Vol 23 (2) ◽  
pp. 98-106 ◽  
Author(s):  
Patricia Wilson ◽  
Elspeth Mathie ◽  
Fiona Poland ◽  
Julia Keenan ◽  
Amanda Howe ◽  
...  
Keyword(s):  
Health Research ◽  
Public Involvement ◽  
Research Policy ◽  
Patient And Public Involvement ◽  
Realist Evaluation ◽  
Working Relationships ◽  
Programme Theory ◽  
Policy Makers ◽  
Ongoing Evaluation ◽  
Normalization Process

Objectives To explore how embedded patient and public involvement is within mainstream health research following two decades of policy-driven work to underpin health research with patient and public involvement in England. Methods Realist evaluation using Normalization Process Theory as a programme theory to understand what enabled patient and public involvement to be embedded as normal practice. Data were collected through a national scoping and survey, and qualitative methods to track patient and public involvement processes and impact over time within 22 nationally funded research projects. Results In research studies that were able to create reciprocal working relationships and to embed patient and public involvement this was contingent on: the purpose of patient and public involvement being clear; public contributors reflecting research end-beneficiaries; researchers understanding the value of patient and public involvement; patient and public involvement opportunities being provided throughout the research and ongoing evaluation of patient and public involvement. Key contested areas included: whether to measure patient and public involvement impact; seeking public contributors to maintain a balance between being research-aware and an outsider standpoint seen as ‘authentically’ lay; scaling-up patient and public involvement embedded within a research infrastructure rather than risk token presence and whether patient and public involvement can have a place within basic science. Conclusions While patient and public involvement can be well-integrated within all types of research, policy makers should take account of tensions that must be navigated in balancing moral and methodological imperatives.

scholarly journals Guidance for researchers wanting to link NHS data using non-consent approaches: a thematic analysis of feedback from the Health Research Authority Confidentiality Advisory Group

2020 ◽  
Vol 5 (1) ◽  
Author(s):  
Lauren Cross ◽  
Lauren Emma Carson ◽  
Amelia Jewell ◽  
Margaret Heslin ◽  
David Osborn ◽  
...  
Keyword(s):  
Health Research ◽  
Linked Data ◽  
Public Involvement ◽  
Data Linkage ◽  
Patient And Public Involvement ◽  
Advisory Group ◽  
Health Records ◽  
Complex Process ◽  
Governance Challenges ◽  
Full Approval

IntroductionThe use of linked data and non-consent methodologies is a rapidly growing area of health research due to the increasing detail, availability and scope of routinely collected electronic health records data. However, gaining the necessary legal and governance approvals to undertake data linkage is a complex process in England. ObjectivesWe reflect on our own experience of establishing lawful basis for data linkage through Section 251 approval, with the intention to build a knowledgebase of practical advice for future applicants. MethodsThematic analysis was conducted on a corpus of Section 251 feedback reports from the NHS Health Research Authority Confidentiality Advisory Group. ResultsFour themes emerged from the feedback. These were: (a) Patient and Public Involvement, (b)~Establishing Rationale, (c) Data maintenance and contingency, and the need to gain (d) Further Permissions from external authorities prior to full approval. ConclusionsSecuring Section 251 approval poses ethical, practical and governance challenges. However, through a comprehensive, planned approach Section 251 approval is possible, enabling researchers to unlock the potential of linked data for the purposes of health research.

scholarly journals Innovating public engagement and patient involvement through strategic collaboration and practice

2019 ◽  
Vol 5 (1) ◽  
Author(s):  
Leah Holmes ◽  
Katharine Cresswell ◽  
Susannah Williams ◽  
Suzanne Parsons ◽  
Annie Keane ◽  
...  
Keyword(s):  
Professional Practice ◽  
Public Engagement ◽  
Health Research ◽  
Patient Involvement ◽  
Economies Of Scale ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Research Activity ◽  
North West ◽  
The Impact

Abstract Background Patient and public involvement and engagement is an important and expected component of health-related research activity in the UK. Specifically within the health research sphere, public engagement (usually defined as raising awareness of research) and patient involvement (usually defined as actively involving people in research) have traditionally been seen as separate but have much to gain from working together towards a common goal of better health outcomes for all. Methods This paper describes a unique approach taken by the Public Programmes Team: a small interdisciplinary team of public engagement specialists, with backgrounds in science, community development, public engagement and involvement, policy, ethics, communications, industry, museums and creative practice, embedded within translational research infrastructure and delivery in Manchester in the North West of England. We propose a new model of professional practice – a 'cycle' of engagement and involvement – innovating across the complementary fields of public engagement and patient involvement, and working inclusively and in partnership with people in health research. Further, our approach capitalises on strategic collaboration offering economies of scale and a joined up way of working. Our ambition is to boldly experiment, learn and reflect, responsibly and based on evidence and partnerships, using methods of engagement that address issues of social justice. Results Here, we report on preliminary case studies exemplifying the impact of our approach, and data relating to achievements and learning between April 2017 and March 2018. Informed by our findings, we propose that our approach has the potential to be replicated elsewhere. Conclusions Our practice and the beginning of its evaluation lead us to believe that our way of working and model of professional practice – the ‘cycle’ of engagement and involvement – is effective in: addressing our vision of making health research relevant and inclusive for everyone; and embedding and joining up public involvement in a busy and fertile translational health research ecosystem.

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.

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