scholarly journals Engaging patients and the public in Health Research: experiences, perceptions and training needs among Manitoba health researchers

2019 ◽  
Vol 5 (1) ◽  
Author(s):  
Leah K. Crockett ◽  
Carolyn Shimmin ◽  
Kristy D. M. Wittmeier ◽  
Kathryn M. Sibley
Keyword(s):  
Public Engagement ◽  
Health Research ◽  
Training Needs ◽  
Future Research ◽  
Advisory Group ◽  
Cross Sectional ◽  
The Public ◽  
Patient And Public Engagement ◽  
Manitoba Health ◽  
And Training

Abstract Background The significance of patient and public engagement is increasingly recognized in health research, demonstrated by explicit requirements for patient and public engagement by funding agencies and journals. Such requirements have charged health researchers with leading patient and public engagement efforts, but evidence suggests that this practice is still evolving. Little research has explored the experiences and training needs of health researchers. This study aimed to establish a baseline understanding of the experiences, perceptions and training needs of health researchers in engaging patients and the public in health research in the context of Manitoba. Methods A cross-sectional 50-item questionnaire was distributed using a multi-phase purposive sampling strategy targeting health researchers in Manitoba, Canada. Data was summarized using frequencies, percentages and analyzed using chi-square testing. A local patient engagement advisory group was consulted at the interpretation stage of the study to obtain feedback and input on the findings and their implications. Results Responses from 53 health researchers were included. Most participants had engaged patients and the public in their own research (n = 43, 81.1%). Those who had engaged reported having some (n = 19, 44.2%), extensive (n = 14, 32.6%) or a little (n = 10, 23.3%) experience with this process. Most engaged at the levels of inform, consult or involve (81.3, 64.6 and 54.2% respectively), while fewer engaged at the collaborate (37.5%) or patient-directed levels (12.5%). Recruitment occurred using a number of approaches and engagement occurred at various phases of the research process, while main groups engaged were patients (n = 38, 82.6%) and families/caregivers (n = 25, 54.4%). Barriers to engaging patients and the public in health research included funding, time, compensation, logistics, recruitment, motivation at both the patient and researcher level, and skills of researchers to engage. Researchers reported an overwhelming need and interest for supports, funding and training to effectively engage patients and the public in health research. Consultation with the patient advisory group provided further insight on study findings and areas for future research. Conclusions Participating Manitoba health researchers engaged patients and the public in health research at multiple, but typically lower levels of involvement. Findings highlight the barriers to effective, authentic and meaningful patient and public engagement and support the need for targeted training, supports, funding and time for health researchers.

scholarly journals Involving the Public in Data Linkage Research

2020 ◽  
Vol 5 (5) ◽  
Author(s):  
Mhairi Aitken ◽  
Annette Braunack-Mayer ◽  
Felicity Flack ◽  
Kimberlyn M McGrail ◽  
Michael Burgess ◽  
...  
Keyword(s):  
Public Engagement ◽  
Health Research ◽  
Consensus Statement ◽  
Data Linkage ◽  
Health Data ◽  
Advisory Council ◽  
Research Network ◽  
Plain Language ◽  
The Public ◽  
Data Intensive

Introduction“The Consensus Statement on Public Involvement and Engagement with Data-Intensive Health Research”, recent data breaches, and growing public awareness and controversy associated with secondary use of health data all highlight the need to understand what data sharing the public will support, under what circumstances, for what purposes and with whom. Objectives and ApproachThis symposium explores methods and findings from public engagement at all stages of data linkage research, beginning with short presentations (~6-8 minutes) on recent work: Mhairi Aitken: Consensus Statement - principles and an application using deliberative workshops to explore public expectations of public benefits from data-intensive health research Annette Braunack-Mayer/Felicity Flack: Surveys and citizens’ juries: Sharing government data with private industry Kim McGrail/Mike Burgess: Public deliberations on cross-sector data linkage, and combining public and private sources of data Alison Paprica: Plain language communication informed by Health Data Research Network Canada’s Public Advisory Council. Half the session will be spent interacting with the audience through live polling. The moderator will post a series of poll question such as “What is the most important thing for meaningful public engagement?” to prompt audience thinking on the topic. After the audience responses are revealed, panelists will share their own views about what they think is the best answer, and the main reason(s) behind their choice. The last 10-15 minutes of the session will be reserved for Q&A and dialogue with the audience. ResultsWe anticipate that this approach will surface emerging and tacit knowledge from presenters and the audience, and augment that through generative discussion. Conclusion / ImplicationsSession attendees will leave with a better understanding of the current state of knowledge and ways to talk about that understanding with other researchers, policy makers and the public.

scholarly journals Open Science and the Science-Society Relationship

Society ◽  
2019 ◽  
Vol 56 (3) ◽  
pp. 246-255 ◽  
Author(s):  
Martin Lakomý ◽  
Renata Hlavová ◽  
Hana Machackova
Keyword(s):  
Public Engagement ◽  
Science Communication ◽  
Ethical Issues ◽  
Current Knowledge ◽  
Open Science ◽  
Unintended Consequences ◽  
Future Research ◽  
The Public ◽  
Science Society ◽  
Scientific Institutions

Abstract Nowadays, the prevailing trend in the science-society relationship is to engage with the broader public, which is beneficial for the public, scientific institutes, scientific findings, and the legitimacy of science as a whole. This article provides a broad review of the rapidly growing research on Open Science and identifies the gaps in the current knowledge for future research. The review focuses on the science-society relationship, such that knowledge from this field is summarised and systematised. Insight into the most salient topics, including science communication, public engagement with science, public cognition of science, and challenges and potential unintended consequences connected to interactions with the public are examined. The first section of the paper focuses on science communication which involves efforts and approaches to inform the public about science by the most effective means. The section on public engagement reviews how scientists and scientific institutions are increasingly involved in direct interactions with the public and different groups of stakeholders to make science more open. The section focusing on public cognition of science provides information about public knowledge, perception, and trust regarding science, which both determines and is formed by public engagement. Last, risks, ethical issues, and data issues connected to the implementation of Open Science principles are reviewed, as there are many unintended consequences of Open Science which are examined by this current research. In conclusion, research covering the science-society relationship is rapidly growing. However, it brings multiple challenges as well as opportunities which are captured and discussed in a variety of existing studies. This article provides a coherent overview of this field in order to bring more comprehensible knowledge to scientists, scientific institutions, and outreach professionals.

OP82 Ethical Challenges Related To Engaging Patients And The Public In HTA

2018 ◽  
Vol 34 (S1) ◽  
pp. 30-30
Author(s):  
Meredith Vanstone ◽  
Julia Bidonde ◽  
Ken Bond ◽  
Julia Abelson ◽  
Lisa Schwartz ◽  
...  
Keyword(s):  
Public Engagement ◽  
Information Disclosure ◽  
Ethical Issues ◽  
Policy Decision ◽  
Health Technology ◽  
Ethical Challenges ◽  
Recruitment Methods ◽  
The Public ◽  
Risks And Benefits ◽  
Patient And Public Engagement

Introduction:It is widely recognized that the incorporation of patient and public perspectives can enrich health policy decision-making. Methodological and practical advice on engaging patients and the public has proliferated in recent years, with many health technology assessment (HTA) agencies working to formalize their processes in this area. However, despite growing enthusiasm for patient and public engagement, many ethical issues remain unaddressed including: balancing risks and benefits to participants; recruitment methods; reimbursement for time spent participating; representation; and, information disclosure.Methods:In this critical analysis, we draw on our collective experiences engaging with patients and public in the context of HTA. We use principles from two theories, i) research ethics, and ii) participatory governance, to analyze these challenges. The purpose of this analysis is to explore the ways in which risks and benefits to patient and public participants might be balanced in HTA activities.Results:We begin by describing some ethically challenging experiences we have faced when soliciting views and values from patients and members of the public, some anticipated and some unexpected. These challenges include unexpected disclosures of information, navigating power differentials when working with vulnerable populations, eliciting information about potentially traumatizing experiences, and fairly representing controversial and conflicting opinions. We offer examples about what types of patient engagement activities may subject participants to unreasonable risk, and suggest some guiding principles to help plan ethical patient and public engagement activities.Conclusions:Patient and public engagement requires more than just procedural methodological expertise- it also requires the ability to identify and analyze relevant ethical issues. We posit that health technology assessors have a moral obligation to ensure that the risks of patient and public engagement activities do not outweigh the benefits. We call upon the HTA community to engage in thoughtful deliberation about what can be learned from experiences within HTA and in other contexts.

scholarly journals To CAG or not to CAG? Difficulties in determining submission to the Confidentiality Advisory Group: a commentary

2020 ◽  
pp. 174701612092006
Author(s):  
V Ranieri ◽  
H Stynes ◽  
E Kennedy
Keyword(s):  
Informed Consent ◽  
Health Research ◽  
Local Information ◽  
Advisory Group ◽  
Primary Role ◽  
The Public ◽  
Confidential Data ◽  
Information Governance ◽  
Group A

The Confidentiality Advisory Group (CAG) is a specialised body that advises the Health Research Authority (HRA) and the Secretary of State for Health on requests for access to confidential information, in the absence of informed consent from its owners. Its primary role is to oversee the safe use of such information and to counsel the governing bodies mentioned above as to whether such use is appropriate or inappropriate. Researchers who seek access to England or Wales-based confidential data, for medical purposes that are in the interest of the public, are typically required to submit an application to this body. However, it is not always clear to researchers whether requests for access to patient data fit within the remit of the CAG or a Trust’s local information governance team. This commentary will, therefore, explore the role of the CAG and reflect on how best to support researchers with this question.

scholarly journals Public engagement and crowdfunding for health research: A global qualitative evidence synthesis and TDR pilot

2021 ◽  
Author(s):  
Eneyi E Kpokiri ◽  
Clarisse Sri-Pathmanathan ◽  
Priyanka Shrestha ◽  
Sana Navaid ◽  
Teerawat Wiwatpanit ◽  
...  
Keyword(s):  
Public Engagement ◽  
Health Research ◽  
Mixed Methods Research ◽  
Evidence Synthesis ◽  
Mitigation Strategies ◽  
Qualitative Evidence Synthesis ◽  
Middle Income ◽  
Pilot Programme ◽  
The Public ◽  
Qualitative Evidence

Background: Many exceptional researchers, especially in low-and middle-income countries (LMICs) face structural disadvantages in applying for research grants. Public engagement and crowdfunding make it possible for researchers to directly seek support from the public, by engaging large groups of people who make small contributions to support a project. This manuscript synthesizes global qualitative evidence and describes a WHO-TDR public engagement and crowdfunding pilot programme. Methods: We searched six databases for primary qualitative and mixed-methods research. We used a thematic synthesis approach and assessed our findings using the GRADE-CERQual approach. A crowdfunding approach to finance research studies was tested through a pilot programme, with a focus on infectious diseases of poverty. TDR Global mentors provided support for five finalists to engage the public and develop crowdfunding campaigns. Results: Nine studies were included in the qualitative evidence synthesis. Themes were developed into seven key findings, including the need for extensive public engagement, the potential for crowdfunding to open a communication channel between researchers and the public, key correlates of crowdfunding success and the risks of crowdfunding health research with associated mitigation strategies. The TDR pilot programme received 121 entries from 37 countries. Five LMIC-based researchers received training and joined a working group. Three researchers launched their crowdfunding campaigns, met their goals and received substantial monetary and non-monetary contributions. Conclusion: Public engagement provides a foundation for effective crowdfunding for health research. Our evidence synthesis and pilot data provide practical strategies for LMIC researchers to engage the public and conduct crowdfunding campaigns.

Transforming Government by Leveraging Disruptive Technologies

2020 ◽  
Vol 12 (1) ◽  
pp. 87-113
Author(s):  
Maria A. Wimmer ◽  
Gabriela Viale Pereira ◽  
Alexander Ronzhyn ◽  
Vera Spitzer
Keyword(s):  
Public Sector ◽  
Public Service ◽  
Training Needs ◽  
Future Scenarios ◽  
Technology Roadmapping ◽  
The Public ◽  
Disruptive Technologies ◽  
Starting Point ◽  
Virtual And Augmented Reality ◽  
And Training

While the public sector traditionally lags behind business in innovation, significant changes are anticipated with the broad diffusion of so-called disruptive technologies. The use of such technologies in public service, along with possible benefits, need to be well researched, and challenges be carefully discussed, analysed and evaluated. This paper applies scenario-based science and technology roadmapping to identify research and training needs in the implementation of disruptive technologies in public service. 70 experts reviewed 13 future scenarios and derived a number of research and training needs regarding internet of things, artificial intelligence, virtual and augmented reality, big data and other disruptive technologies. The identified needs serve as a starting point for a broader and more informed discussion about how such new (disruptive) technologies can be successfully deployed in the public sector - leveraging the benefits of these technologies while at the same time constraining the drawbacks affiliated with them.

PARE0029 THE JOURNEY FROM PATIENT AND PUBLIC ENGAGEMENT (PPE) TO INVOLVEMENT: FACILITATING PATIENT PARTNER RESEARCH WORKSHOPS WITH A FOCUS ON FIBROFOG IN FIBROMYALGIA

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 1300.1-1301
Author(s):  
S. Derham ◽  
M. Brooke
Keyword(s):  
Data Collection ◽  
Clinical Research ◽  
Rheumatic Diseases ◽  
Public Engagement ◽  
Health Care Professionals ◽  
Health Research ◽  
Healthcare Professionals ◽  
Local Networks ◽  
Patient And Public Engagement ◽  
Research Questions

Background:The Bath Institute for Rheumatic Diseases (BIRD), a registered charity in the United Kingdom (UK), supports research, education and patient engagement for the benefit of people with rheumatic diseases. Event feedback from two Fibromyalgia Information Days showed patients valued the sessions and were keen to be involved in research. Fibrofog in fibromyalgia was identified by patients as one topic of interest.Objectives:To facilitate Patient Research Partner Workshops to generate research questions and inform the design of clinical research into fibrofog in fibromyalgia.Methods:Three Patient Research Partner Workshops, focusing on fibrofog in fibromyalgia, were run between January 2018 and April 2019. All were co-facilitated by a clinician, SD, and BIRD Patient and Public Engagement (PPE) lead,MB. Ethical approval was not required1. Patients were invited to participate by email. A Patient Partner Information Sheet accompanied the workshop invitation. Audio recordings of the discussions were made to aid data capture, following informed written consent by all workshop participants. Travel expenses were offered to all participants.Results:25 (n=25) women with fibromyalgia attended the workshops. Workshop 1 (n= 5) explored, ‘What areas do you think we should research around fibrofog in fibromyalgia’? Patient partners felt research into fibrofog in fibromyalgia was needed to identify and validate symptoms, and to inform discussions with healthcare professionals. They also called for research into coping strategies to help with fibrofog symptoms. This reflected similar patient calls for research into fibrofog in fibromyalgia2.Workshop 2 (n=10) and Workshop 3 (n=9) explored ‘How do you think we should research fibrofog in fibromyalgia’? Both workshops identified a broad range of research questions and designs, reflecting individual experiences, knowledge and symptom severity. Suggested research questions included: How severe is fibrofog for each person? What triggers fibrofog? How does fibrofog affect daily tasks? How does fibrofog affect work? What do people with fibromyalgia, their partners, family members and healthcare professionals understand about fibrofog?Suggested data collection methods included interviews, focus groups and questionnaires. Use of online surveys or interviews had mixed responses. This reflected computer literacy skills and access to hardware. Discussions around recruitment of participants to future studies revealed a wealth of local knowledge including access to community venues and healthcare facilities, support groups and local networks.Participants were very satisfied with the workshops, finding them helpful, informative and thought provoking. All wanted to continue their involvement in research.Conclusion:Patient Research Partner Workshops are integral to the generation and delivery of clinical research into fibrofog in fibromyalgia. Research designs need to offer multiple methods of data collection to be as inclusive as possible. Next steps will be to formally recruit Patient Research Partners to co-develop a research grant application to explore fibrofog in fibromyalgia.References:[1]INVOLVE. Public involvement in research and research ethics committee review V.2 Southampton: INVOLVE/Health Research Authority; 2016 [Available from:https://www.invo.org.uk/wp-content/uploads/2016/05/HRA-INVOLVE-updated-statement-2016.pdf.[2]Fitzcharles, M.-A., Brachaniec, M., Cooper, L., Dubin, R., Flynn, T., Gerhold, K., Häuser, W., Cowan, K., Laupacis, A., Marleau, R., Milot, M., Szajcz-Keller, N., Sumpton, J., Walsh, Z. & El-Gabalawy, H. 2017. A paradigm change to inform fibromyalgia research priorities by engaging patients and health care professionals.Canadian Journal of Pain,1, 137-147.Acknowledgments:This work was supported by the National Institute for Health research [ICA-PCAF-2018-01-078 to SD]Disclosure of Interests:Sandra Derham: None declared, Mel Brooke Grant/research support from: Sponsorship from Lilly to BIRD for the Patient and Public Engagement Programme, Sponsorship from Sanofi to BIRD for the Healthcare Professionals Education Programme.

scholarly journals Research capacity and training needs for non-communicable diseases in the public health arena in Turkey

2014 ◽  
Vol 14 (1) ◽  
Author(s):  
Bulent Kilic ◽  
Peter Phillimore ◽  
Duygu Islek ◽  
Dilek Oztoprak ◽  
Eren Korkmaz ◽  
...  
Keyword(s):  
Public Health ◽  
Research Capacity ◽  
Communicable Diseases ◽  
Training Needs ◽  
Non Communicable Diseases ◽  
The Public ◽  
And Training

scholarly journals Gambaran Strata Posyandu di Kecamatan Mumbulsari Kabupaten Jember

2020 ◽  
Vol 11 ◽  
pp. 57
Author(s):  
Ricko Pratama Ridzkyanto
Keyword(s):  
Quantitative Analysis ◽  
Financial Support ◽  
Sampling Technique ◽  
Input Process ◽  
Community Based ◽  
Cross Sectional ◽  
Integrated Healthcare ◽  
The Public ◽  
Healthcare Center ◽  
And Training

Integrated Healthcare Center (Posyandu) is a form of community-based health efforts that is managed and organized from, by, for, and with the community in terms of empowering the community and providing facilities to the public in obtaining basic health services. The purpose of this study was to determine the Integrated Healthcare Center (Posyandu) levels in Mumbulsari District, Jember Regency. This type of research includes quantitative analysis with a cross-sectional research design. The sample in this study was all Integrated Healthcare Center (Posyandu) in Mumbulsari Subdistrict, Jember Regency, with 78 Integrated Healthcare Center (Posyandu) using a sampling technique that is total sampling. The results showed that in Mumbulsari Subdistrict, there were 78 Integrated Healthcare Center (Posyandu) consisting of 4 (5.13%) madya, 54 (69.23%) purnama, and 20 (25.64%) mandiri. Integrated Healthcare Center (Posyandu) institutions include decree and organizational structure, while Integrated Healthcare Center (Posyandu) management includes input, process, and output. Integrated Healthcare Center (Posyandu) expects that an increasing level from year to year by paying attention to aspects of management such as written work plans, infrastructure, financial support, and training for cadres Keywords: Community-Based Health Efforts (UKBM); Integrated Healthcare Center ABSTRAK Posyandu merupakan salah satu bentuk Upaya Kesehatan Bersumber Daya Masyarakat (UKBM) yang dikelola dan diselenggarakan dari, oleh, untuk dan bersama masyarakat dalam hal memberdayakan masyarakat dan memberikan kemudahan kepada masyarakat dalam memperoleh pelayanan kesehatan dasar. Tujuan penelitian adalah mengetahui strata posyandu di Kecamatan Mumbulsari Kabupaten Jember. Jenis penelitian termasuk dalam penelitian kuantitatif dengan desain penelitian cross sectional. Sampel dalam penelitian ini adalah seluruh posyandu di Kecamatan Mumbulsari Kabupaten Jember sebanyak 78 posyandu dengan teknik pengambilan sampel yaitu total sampling. Hasil penelitian menujukkan bahwa di Kecamatan Mumbulsari terdapat 78 posyandu terdiri dari 4 (5,13%) posyandu madya, 54 (69,23%) posyandu purnama, dan 20 (25,64%) posyandu mandiri. Kelembagaan posyandu meliputi surat keputusan posyandu dan struktur orgnisasi posyandu sedangkan pengelolaan posyandu meliputi input, proses, dan output. Diharapkan terjadi peningkatan strata posyandu dari tahun ke tahun dengan memperhatikan aspek pengelolaan posyandu seperti rencana kerja tertulis, sarana prasarana, dukungan dana, serta pelatihan untuk kader Kata kunci: UKBM; posyandu

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