scholarly journals A study of the reporting of patient and public involvement and engagement (PPIE) in orthodontic research

2020 ◽  
pp. 146531252096857
Author(s):  
Veena A Patel ◽  
Jonathan Shelswell ◽  
Neil Hillyard ◽  
Sue Pavitt ◽  
Sophy K Barber
Keyword(s):  
Medical Research ◽  
Public Engagement ◽  
Public Involvement ◽  
Research Process ◽  
Patient And Public Involvement ◽  
Research Articles ◽  
Sources Of Information ◽  
Research Activity ◽  
High Quality Research ◽  
Research Reporting

Introduction: Patient and public involvement and engagement (PPIE) in research is an essential component of high-quality research. Patients and the public can identify which research topics are most relevant to them, contribute to study design, and interpretation and dissemination of findings. While inclusion of PPIE is widely adopted in medical research, awareness within the dental research community is more limited. Aim: To examine patient and public involvement and engagement in orthodontic research activity. Design: Identification and appraisal of use of PPIE in orthodontic research reporting and funding applications using a systematic approach. Methods: Three sources of information were examined: (1) research articles published between September 2018 and September 2019 in four major orthodontic journals. Articles were examined for reported PPIE; (2) common funding bodies for orthodontic research were assessed to establish whether PPIE was mandated (National Institute for Health Research, Medical Research Council, Wellcome Trust, Chief Scientist Office (Scotland), Health and Care Research Wales, British Orthodontic Society Foundation, Royal College of Surgeons and CLEFT); and (3) publication guidance for authors in these journals was examined to identify whether reporting of PPIE was included. Results: Of the 363 research articles, 2 (0.6%) mention patient/public involvement. None of the 363 research articles mention patient/public engagement. Of nine funding bodies, 2 (22%) request evidence of patient/public involvement as a condition of receiving funding with one (11%) expecting evidence of public engagement to be provided as a condition of receiving funding. None of the four major orthodontic journals include patient/public involvement and/or engagement in their guidance for authors. Conclusion: There is currently: (1) a notable lack of reporting of PPIE in orthodontic research; (2) variability in the requirements of funding bodies for researchers to include PPIE in funding applications and throughout the research process; and (3) no stipulation in journals’ instructions for authors.

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 for Dementia Research in Low- and Middle-Income Countries: Developing Capacity and Capability in South Asia

2021 ◽  
Vol 12 ◽  
Author(s):  
Jahanara Miah ◽  
Saima Sheikh ◽  
Rachel C. Francis ◽  
Gayathri Nagarajan ◽  
Sojan Antony ◽  
...  
Keyword(s):  
South Asia ◽  
Study Protocol ◽  
Public Engagement ◽  
Online Survey ◽  
Public Involvement ◽  
Research Process ◽  
Patient And Public Involvement ◽  
Middle Income ◽  
Middle Income Countries ◽  
Dementia Research

Background: Patient and public involvement (PPI) is an active partnership between the public and researchers in the research process. In dementia research, PPI ensures that the perspectives of the person with “lived experience” of dementia are considered. To date, in many lower- and middle-income countries (LMIC), where dementia research is still developing, PPI is not well-known nor regularly undertaken. Thus, here, we describe PPI activities undertaken in seven research sites across South Asia as exemplars of introducing PPI into dementia research for the first time.Objective: Through a range of PPI exemplar activities, our objectives were to: (1) inform the feasibility of a dementia-related study; and (2) develop capacity and capability for PPI for dementia research in South Asia.Methods: Our approach had two parts. Part 1 involved co-developing new PPI groups at seven clinical research sites in India, Pakistan and Bangladesh to undertake different PPI activities. Mapping onto different “rings” of the Wellcome Trust's “Public Engagement Onion” model. The PPI activities included planning for public engagement events, consultation on the study protocol and conduct, the adaptation of a study screening checklist, development and delivery of dementia training for professionals, and a dementia training programme for public contributors. Part 2 involved an online survey with local researchers to gain insight on their experience of applying PPI in dementia research.Results: Overall, capacity and capability to include PPI in dementia research was significantly enhanced across the sites. Researchers reported that engaging in PPI activities had enhanced their understanding of dementia research and increased the meaningfulness of the work. Moreover, each site reported their own PPI activity-related outcomes, including: (1) changes in attitudes and behavior to dementia and research involvement; (2) best methods to inform participants about the dementia study; (3) increased opportunities to share knowledge and study outcomes; and (4) adaptations to the study protocol through co-production.Conclusions: Introducing PPI for dementia research in LMIC settings, using a range of activity types is important for meaningful and impactful dementia research. To our knowledge, this is the first example of PPI for dementia research in South Asia.

scholarly journals A Rapid Systematic Review of Public Responses to Health Messages Encouraging Vaccination against Infectious Diseases in a Pandemic or Epidemic

Vaccines ◽  
2021 ◽  
Vol 9 (2) ◽  
pp. 72
Author(s):  
Sadie Lawes-Wickwar ◽  
Daniela Ghio ◽  
Mei Yee Tang ◽  
Chris Keyworth ◽  
Sabina Stanescu ◽  
...  
Keyword(s):  
Systematic Review ◽  
Information Needs ◽  
Public Involvement ◽  
Vaccine Safety ◽  
Research Process ◽  
Patient And Public Involvement ◽  
Vaccine Uptake ◽  
High Quality ◽  
High Quality Research ◽  
Target Populations

Public health teams need to understand how the public responds to vaccination messages in a pandemic or epidemic to inform successful campaigns encouraging the uptake of new vaccines as they become available. A rapid systematic review was performed by searching PsycINFO, MEDLINE, healthevidence.org, OSF Preprints and PsyArXiv Preprints in May 2020 for studies including at least one health message promoting vaccine uptake of airborne-, droplet- and fomite-spread viruses. Included studies were assessed for quality using the Mixed Methods Appraisal Tool (MMAT) or the Assessment of Multiple Systematic Reviews (AMSTAR), and for patient and public involvement (PPI) in the research. Thirty-five articles were included. Most reported messages for seasonal influenza (n = 11; 31%) or H1N1 (n = 11; 31%). Evidence from moderate to high quality studies for improving vaccine uptake included providing information about virus risks and vaccination safety, as well as addressing vaccine misunderstandings, offering vaccination reminders, including vaccination clinic details, and delivering mixed media campaigns across hospitals or communities. Behavioural influences (beliefs and intentions) were improved when: shorter, risk-reducing or relative risk framing messages were used; the benefits of vaccination to society were emphasised; and beliefs about capability and concerns among target populations (e.g., vaccine safety) were addressed. Clear, credible, messages in a language target groups can understand were associated with higher acceptability. Two studies (6%) described PPI in the research process. Future campaigns should consider the beliefs and information needs of target populations in their design, including ensuring that vaccine eligibility and availability is clear, and messages are accessible. More high quality research is needed to demonstrate the effects of messaging interventions on actual vaccine uptake.

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 Open science: policy implications for the evolving phenomenon of user-led scientific innovation

2010 ◽  
Vol 09 (01) ◽  
pp. A05 ◽  
Author(s):  
Victoria Stodden
Keyword(s):  
Citizen Participation ◽  
Public Engagement ◽  
Dna Sequences ◽  
Public Involvement ◽  
Research Process ◽  
Scientific Activity ◽  
Policy Implications ◽  
Knowledge Generation ◽  
Reproducible Research ◽  
Treatment Research

From contributions of astronomy data and DNA sequences to disease treatment research, scientific activity by non-scientists is a real and emergent phenomenon, and raising policy questions. This involvement in science can be understood as an issue of access to publications, code, and data that facilitates public engagement in the research process, thus appropriate policy to support the associated welfare enhancing benefits is essential. Current legal barriers to citizen participation can be alleviated by scientists’ use of the “Reproducible Research Standard,” thus making the literature, data, and code associated with scientific results accessible. The enterprise of science is undergoing deep and fundamental changes, particularly in how scientists obtain results and share their work: the promise of open research dissemination held by the Internet is gradually being fulfilled by scientists. Contributions to science from beyond the ivory tower are forcing a rethinking of traditional models of knowledge generation, evaluation, and communication. The notion of a scientific “peer” is blurred with the advent of lay contributions to science raising questions regarding the concepts of peer-review and recognition. New collaborative models are emerging around both open scientific software and the generation of scientific discoveries that bear a similarity to open innovation models in other settings. Public engagement in science can be understood as an issue of access to knowledge for public involvement in the research process, facilitated by appropriate policy to support the welfare enhancing benefits deriving from citizen-science.

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 How to engage patient partners in health service research: a scoping review protocol

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Sarah Cecilie Tscherning ◽  
Hilary Louise Bekker ◽  
Tina Wang Vedelø ◽  
Jeanette Finderup ◽  
Lotte Ørneborg Rodkjær
Keyword(s):  
Health Service ◽  
Narrative Analysis ◽  
Scoping Review ◽  
Health Service Research ◽  
Public Involvement ◽  
Research Process ◽  
Patient And Public Involvement ◽  
Service Research ◽  
Review Protocol ◽  
The Impact

Abstract Background The patients’ and the carers’ roles in health service research has changed from being solely participants in studies to also being active partners and co-designers in the research process. Research carried out with or by patient partners is an increasingly accepted component of health service research in many countries, but how researchers can best approach engaging patient partners in the research process is still not clear. There is a need for guidance to support researchers when engaging patient partners and assess how such engagement impacts on research outputs. The aim of this paper is to present a protocol for a scoping review of published literature on how to engage patient partners effectively in the research process. Investigating this aim implies examining: a) how to engage patient partners in the research process; and b) what impact such engagement has on research outputs. This scoping review protocol is the first to examine how to engage patient partners effectively across different diseases and research areas. Methods A scoping review using a systematic process informed by Arksey and O’Malley’s framework will be carried out across six electronic databases using the terms ‘patient participation’, ‘community participation’, ‘research personnel’, ‘patient and public involvement’ and ‘patient partner’. We will include published reviews concerning engagement of patient partners in the research process in healthcare settings, and exclude studies assessing engagement in treatment and healthcare. Two reviewers will screen the titles and abstracts of articles independently for inclusion, and extract data from articles that meet the inclusion criteria. Where there is disagreement, a third reviewer will be consulted to facilitate consensus. The data elicited will include: author and study characteristics; research aims and findings; description of patient engagement in the research process; and assessment impact. Descriptive data and narrative analysis will synthesize findings. Discussion To understand how to engage patient partners effectively in the research process, the impact of such engagement must be taken into consideration to give a qualified suggestion for future guidance. We hope this review will raise awareness of which common elements constitute effective engagement of patient partners in the research process.

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