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.

The Social Value of Research and Health Research Priority-Setting

2021 ◽  
Author(s):  
D.M. Wenner
Keyword(s):  
Clinical Research ◽  
Priority Setting ◽  
Health Research ◽  
Human Subjects ◽  
Social Value ◽  
Research Priority ◽  
The Social ◽  
Research Questions ◽  
Social Scientific ◽  
Health Research Priority Setting

This chapter discusses the social value requirement in clinical research and its intersection with health research priority-setting. The social value requirement states that clinical research involving human subjects is only ethical if it has the potential to produce socially valuable knowledge. The chapter discusses various ways to specify both the justification for and the content of the social value requirement. It goes on to consider the implications of various accounts of the content and justification for the requirement for the ethics of health research priority-setting, showing that while some accounts of the requirement are largely silent with respect to how research questions should be prioritized, others entail robust obligations to prioritize research that might benefit particular groups. The chapter also briefly examines potential arguments for something like a social value requirement in other kinds of research, specifically social scientific research.

scholarly journals Two Approaches to Focus Group Data Collection for Qualitative Health Research

2018 ◽  
Vol 17 (1) ◽  
pp. 160940691775078 ◽  
Author(s):  
Rachel Flynn ◽  
Lauren Albrecht ◽  
Shannon D. Scott
Keyword(s):  
Health Care ◽  
Focus Group ◽  
Data Collection ◽  
Focus Groups ◽  
Health Care Professionals ◽  
Health Research ◽  
Qualitative Health Research ◽  
Group Data ◽  
Focus Group Data ◽  
Qualitative Focus Groups

This article discusses four challenges to conducting qualitative focus groups: (1) maximizing research budgets through innovative methodological approaches, (2) recruiting health-care professionals for qualitative health research, (3) conducting focus groups with health-care professionals across geographically dispersed areas, and (4) taking into consideration data richness when using different focus group data collection methods. In light of these challenges, we propose two alternative approaches for collecting focus group data: (a) extended period of quantitative data collection that facilitated relationship building in the sites prior to qualitative focus groups and (b) focus groups by videoconference. We share our experiences on employing both of these approaches in two national research programs.

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 Research Data Stewardship for Healthcare Professionals

2018 ◽  
pp. 37-53 ◽  
Author(s):  
Paula Jansen ◽  
Linda van den Berg ◽  
Petra van Overveld ◽  
Jan-Willem Boiten
Keyword(s):  
Data Collection ◽  
Clinical Research ◽  
Data Management ◽  
Study Design ◽  
Healthcare Professionals ◽  
Research Data ◽  
Third Parties ◽  
Data Stewardship ◽  
Digital Research

AbstractResearch data stewardship refers to the long-term and sustainable care for research data, from study design to data collection, analysis, storage, and sharing. It involves all activities that are required to ensure that digital research data is findable, accessible, interoperable, and reusable (FAIR) in the long term, including data management, archiving, and reuse by third parties. This chapter provides an overview of the aspects of FAIR data stewardship that you should consider when you are involved in clinical research.

An Overview of Ethics and Public Health Data Collection

2019 ◽  
pp. 313-319
Author(s):  
Holly A. Taylor
Keyword(s):  
Public Health ◽  
Data Collection ◽  
Health Research ◽  
Public Health Practice ◽  
Community Based Participatory Research ◽  
Public Health Research ◽  
Health Data ◽  
Community Based ◽  
Public Health Data ◽  
Research Questions

Collection of data is essential to the practice of public health. This chapter provides a brief introduction to ethics and public health data collection, as well as an overview of chapters in the related section of The Oxford Handbook on Public Health Ethics. A key ethics challenge has been, and will remain, how best to balance the health of the community with the respect owed to individual citizens. The four chapters in this section examine various aspects of those ethics challenges, including those related to the scope of public health surveillance activities, the distinction between public health practice and public health research, community-based participatory research (CBPR), and the use of big data to answer public health research questions.

The Preschool Stuttering Screen for Health Care Professionals

2011 ◽  
Vol 21 (2) ◽  
pp. 59-62
Author(s):  
Joseph Donaher ◽  
Christina Deery ◽  
Sarah Vogel
Keyword(s):  
Risk Factors ◽  
Health Care ◽  
Differential Diagnosis ◽  
Preschool Children ◽  
Health Care Professionals ◽  
Healthcare Professionals ◽  
Evidence Based ◽  
Developmental Profile

Healthcare professionals require a thorough understanding of stuttering since they frequently play an important role in the identification and differential diagnosis of stuttering for preschool children. This paper introduces The Preschool Stuttering Screen for Healthcare Professionals (PSSHP) which highlights risk factors identified in the literature as being associated with persistent stuttering. By integrating the results of the checklist with a child’s developmental profile, healthcare professionals can make better-informed, evidence-based decisions for their patients.

Percutaneous Tracheostomy: A Multidisciplinary Approach

2008 ◽  
Vol 18 (2) ◽  
pp. 87-98 ◽  
Author(s):  
Vinciya Pandian ◽  
Thai Tran Nguyen ◽  
Marek Mirski ◽  
Nasir Islam Bhatti
Keyword(s):  
Health Care ◽  
Quality Assurance ◽  
Data Collection ◽  
Health Care Professionals ◽  
Multidisciplinary Approach ◽  
Percutaneous Tracheostomy ◽  
Johns Hopkins Hospital ◽  
Prospective Data ◽  
Comprehensive Service ◽  
Over Time

Abstract The techniques of performing a tracheostomy has transformed over time. Percutaneous tracheostomy is gaining popularity over open tracheostomy given its advantages and as a result the number of bedside tracheostomies has increased necessitating the need for a Percutaneous Tracheostomy Program. The Percutaneous Tracheostomy Program at the Johns Hopkins Hospital is a comprehensive service that provides care to patients before, during, and after a tracheostomy with a multidisciplinary approach aimed at decreasing complications. Education is provided to patients, families, and health-care professionals who are involved in the management of a tracheostomy. Ongoing prospective data collection serves as a tool for Quality Assurance.

Peranan Bimbingan Keagamaan dalam Meningkatkan Kecerdasan Spiritual Remaja

2019 ◽  
Vol 7 (2) ◽  
pp. 233-252
Author(s):  
Risna Dewi Kinanti ◽  
Dudy Imanudin Effendi ◽  
Abdul Mujib
Keyword(s):  
Data Collection ◽  
Boarding School ◽  
Data Collection Tool ◽  
Supportive Role ◽  
Subject And Object ◽  
Qualitative Descriptive ◽  
Descriptive Approach ◽  
Research Questions

Tujuan dari penelitian ini yaitu untuk mengetahui proses bimbingan keagamaan, fungsi bimbingan keagamaan serta hasil bimbingan keagamaan dalam meningkatkan kecerdasan spiritual remaja di Boarding School SMK PPN Tanjungsari. Dengan pertanyaan penelitian 1) Bagaimana proses bimbingan keagamaan di Boarding School SMK PPN Tanjungsari?, 2) Bagaiamana fungsi bimbingan keagamaan di Boarding School SMK PPN Tanjungsari?, 3) Bagaimana hasil bimbingan keagamaan dalam meningkatkan kecerdasan spiritual remaja di Boarding School SMK PPN Tanjungsari?. Metode yang digunakan dalam penelitian ini adalah metode deskriptif kualitatif dengan teknik pengumpulan datanya dilakukan observasi, wawancara dan dokumentasi, dikarenakan masalah yang diteliti perlu dilukiskan secara sistematis dan faktual dengan menggambarkan keadaan atau status fenomena. Hasil bimbingan keagamaan di Boarding School SMK PPN adalah munculnya aspek-aspek kecerdasan spiritual pada remaja seperti kesadaran untuk menghayati proses ibadah bukan sebagai pengguguran kewajiban, terbiasa berperilaku baik, memiliki prinsip keadilan, memiliki prinsip kebenaran, mampu mengambil hikmah dari musibah yang dihadapinya, bersikap fleksibel, bersikap kritis dan merenungkan penyebab serta alasan segala sesuatu terjadi. Sehingga dapat disimpulkan bahwa bimbingan keagamaan di Boarding Schoool SMK PPN memiliki peranan yang sangat menunjang dalam meningkatkan kecerdasan spiritual remaja. The purpose of this study is to find out how the proccess of islamic guidance, function of islamic guidance, and result of islamic guidance to increase SpritualQuetiont in adolescence. With research questions 1) How the proccess of islamic guidance to increase spiritual quetiont on adolescence ?, 2) What is the function of islamic guidance to increase Spiritual Quetiont on adolescence?, 3) How are the results of islamic guidance to increase Spiritual Quetiont on adolescence?. The method used in this research is qualitative descriptive approach with subject and object of research is guidancer. While the data collection tool in this study through observation, direct interview and written interviews. From the results of research conducted at Boarding School SMK PPN Tanjungsari, it appears of Spiritual Quetiont in adolescents. Such as the behavior of living the worship process, get used to behave well, be fair, be wise, able to take lessons from the difficulties they experienced, be flexible, be critical. So, we can conclude that islamic Guidance has a very supportive role in increasing adolescent Spiritual Quetiont.

Influence of Urbanization on Teaching and Learning of Agriculture for Enhance Skill Acqusition in Ebonyi State.

2019 ◽  
pp. 263-269
Author(s):  
Nwakwengu S.A. ◽  
Aneke C.U.
Keyword(s):  
Data Collection ◽  
Skill Acquisition ◽  
Urban Areas ◽  
Teaching And Learning ◽  
Agricultural Science ◽  
Urban Migration ◽  
Urban Settlement ◽  
Public Secondary School ◽  
Research Questions ◽  
Senior Secondary

The main purpose of this study was to determine the influence of urbanization in teaching and learning of agriculture in Ebonyi State. The study was guided by two research questions and two null hypotheses. A descriptive survey research design was adopted for the study. The population was 397 which comprised 261 teachers of agricultural science in Ebonyi State and 136 senior secondary three students from 5 public secondary school in Abakiliki, Ebonyi State. No sampling was done due to the manageable size of the population. The instrument used for data collection was a 17 item questionnaire which was validated by three experts. The reliability of the instrument was determined using Cronbach Alpha which yielded reliability index of 0.85 indicating that the instrument was suitable for data collection. The questionnaire was distributed by the researcher and three trained research assistants. Out of 397 copies distributed 383 were properly filled and returned representing 96.47 percent return rate. Mean and standard deviation were used to answer the research questions and t-test statistics was used to test the null hypotheses. Based on the data analysis, it was found that urbanization affects the quality of teachers in rural schools due to rural urban migration, increases the rate of agricultural teacher‟s turnover in teaching and reduces government attention to agricultural science teaching facilities in urban areas. Recommendations were made among, others that Government should be make teaching of skill acquisition in urban settlement to be attractive to the students and teachers should make instruction facilities to meet the needed skills and contemporary issues in urban settlement to the students.

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