scholarly journals The Use of Web-Based Technologies in Health Research Participation: Qualitative Study of Consumer and Researcher Experiences

10.2196/12094 ◽  
2018 ◽  
Vol 20 (10) ◽  
pp. e12094 ◽  
Author(s):  
Patrick Cheong-Iao Pang ◽  
Shanton Chang ◽  
Karin Verspoor ◽  
Ornella Clavisi
Keyword(s):  
Qualitative Study ◽  
Health Research ◽  
Research Participation ◽  
Web Based

scholarly journals Attitudes towards health research participation: a qualitative study of US Arabs and Chaldeans

2018 ◽  
Vol 36 (3) ◽  
pp. 325-331 ◽  
Author(s):  
Kimberly D Campbell-Voytal ◽  
Kendra L Schwartz ◽  
Hiam Hamade ◽  
Florence J Dallo ◽  
Anne Victoria Neale
Keyword(s):  
Qualitative Study ◽  
Health Research ◽  
Research Participation ◽  
Health Behaviours ◽  
Research Process ◽  
Study Phase ◽  
Personal Factors ◽  
Structured Interviews ◽  
Health Care Environment ◽  
Risks And Benefits

Abstract Background The Arab Muslim and Chaldean Christian American community is unified by language but culturally diverse. Researchers are challenged to engage the Arab/Chaldean community to meet immigrant health needs. Arabs/Chaldeans are identified as white in clinical data sets making it difficult to identify health behaviours and patterns unique to the community. Objectives To explore the views of members of the Arab/Chaldean community, including researchers and the lay public, regarding health research participation and the role of clinicians, researchers and community leaders in the research process. Methods A qualitative study of Arab and Chaldean adults and researchers conducted in a US community with a large Arab/Chaldean population. Five semi-structured focus group discussions were triangulated with five in-depth semi-structured interviews with Arab or Chaldean primary care researchers. Responses were audio-recorded and transcribed verbatim. Transcripts were coded and thematically analysed, and findings confirmed with community representatives. Results Three themes were identified: (i) research expectations: risks and benefits; (ii) health care environment: clinicians as recruiters and (iii) research participations: risks and benefits. Themes captured concerns with social relationships, reputation or trust and the cost and benefit of research participation. In the Arab/Chaldean community, institutional and political fears and distrust are amplified. Respect for physicians, teachers and faith leaders connected with or recruiting for studies enhances likelihood of research participation. Conclusion Clinical researchers should address the cultural and immigration histories of Arab/Chaldean research participants. Studies that maximize trust will minimize participation bias and lay the groundwork for improved health. Institutional, sociocultural and personal factors require a pre-study phase to engage and educate participants.

scholarly journals Adapting the buying funnel model of consumer behavior to the design of an online health research recruitment tool

2017 ◽  
Vol 1 (4) ◽  
pp. 240-245
Author(s):  
Aalap Doshi ◽  
Lisa Connally ◽  
Meghan Spiroff ◽  
Anita Johnson ◽  
George A. Mashour
Keyword(s):  
Consumer Behavior ◽  
Health Research ◽  
Digital Health ◽  
Research Participation ◽  
Annual Average ◽  
Web Based ◽  
Research Recruitment ◽  
Randomized Design ◽  
The University ◽  
Recruitment Tool

IntroductionUMHealthResearch is the University of Michigan’s digital health research recruitment platform. It allows health researchers to connect efficiently with potentially eligible volunteers.MethodsIn 2013, the UMHealthResearch team strategically adapted a consumer behavior model, the buying funnel, to create the Digital Health Research Participation Funnel. The Digital Health Research Participation Funnel was then used to design a more active way for potential participants to volunteer for research studies through UMHealthResearch.ResultsIn the 5 years before the redesign (2007–2012), an average of 1844 new accounts were created every year, whereas in the completed years after the redesign (2013–2016) the annual average improved to 3906, an increase of 111%.ConclusionAlthough a randomized design was not possible in this instance, these preintervention and postintervention data suggest that the focus on user experience is an effective strategy for improving web-based research recruitment platforms.

scholarly journals The Use of Web-Based Technologies in Health Research Participation: Qualitative Study of Consumer and Researcher Experiences (Preprint)

2018 ◽  
Author(s):  
Patrick Cheong-Iao Pang ◽  
Shanton Chang ◽  
Karin Verspoor ◽  
Ornella Clavisi
Keyword(s):  
New Media ◽  
Social Networking Sites ◽  
Health Research ◽  
Design Research ◽  
New Technologies ◽  
Academic Research ◽  
Research Participation ◽  
Research Projects ◽  
Web Based ◽  
Analysis Methodology

BACKGROUND Health consumers are often targeted for their involvement in health research including randomized controlled trials, focus groups, interviews, and surveys. However, as reported by many studies, recruitment and engagement of consumers in academic research remains challenging. In addition, there is scarce literature describing what consumers look for and want to achieve by participating in research. OBJECTIVE Understanding and responding to the needs of consumers is crucial to the success of health research projects. In this study, we aim to understand consumers’ needs and investigate the opportunities for addressing these needs with Web-based technologies, particularly in the use of Web-based research registers and social networking sites (SNSs). METHODS We undertook a qualitative approach, interviewing both consumer and medical researchers in this study. With the help from an Australian-based organization supporting people with musculoskeletal conditions, we successfully interviewed 23 consumers and 10 researchers. All interviews were transcribed and analyzed with thematic analysis methodology. Data collection was stopped after the data themes reached saturation. RESULTS We found that consumers perceive research as a learning opportunity and, therefore, expect high research transparency and regular updates. They also consider the sources of the information about research projects, the trust between consumers and researchers, and the mobility of consumers before participating in any research. Researchers need to be aware of such needs when designing a campaign for recruitment for their studies. On the other hand, researchers have attempted to establish a rapport with consumer participants, design research for consumers’ needs, and use technologies to reach out to consumers. A systematic approach to integrating a variety of technologies is needed. CONCLUSIONS On the basis of the feedback from both consumers and researchers, we propose 3 future directions to use Web-based technologies for addressing consumers’ needs and engaging with consumers in health research: (1) researchers can make use of consumer registers and Web-based research portals, (2) SNSs and new media should be frequently used as an aid, and (3) new technologies should be adopted to remotely collect data and reduce administrative work for obtaining consumers’ consent.

scholarly journals Challenges arising when seeking broad consent for health research data sharing: a qualitative study of perspectives in Thailand

2018 ◽  
Vol 19 (1) ◽  
Author(s):  
Phaik Yeong Cheah ◽  
Nattapat Jatupornpimol ◽  
Borimas Hanboonkunupakarn ◽  
Napat Khirikoekkong ◽  
Podjanee Jittamala ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Data Sharing ◽  
Health Research ◽  
Research Data ◽  
Broad Consent

scholarly journals “Stop Talking to People; Talk with Them”: A Qualitative Study of Information Needs and Experiences Among Genetic Research Participants in Pakistan and Denmark

2018 ◽  
Vol 14 (1) ◽  
pp. 3-14 ◽  
Author(s):  
Zainab Afshan Sheikh ◽  
Klaus Hoeyer
Keyword(s):  
Qualitative Study ◽  
Information Exchange ◽  
Information Needs ◽  
Research Collaboration ◽  
Genetic Research ◽  
Research Participation ◽  
Research Participants ◽  
Mutual Engagement ◽  
Information Practices ◽  
Types Of Information

This article explores how research participants experienced information practices in an international genetic research collaboration involving the collection of biomaterial and clinical data in both Pakistan and Denmark. We investigated how people make sense of their research participation and the types of information they need and desire. We found great variation in what information exchange does and what participants experience as meaningful. For example, information practices could serve as a source of respect and recognition (in Denmark) or of hope, understanding or help when dealing with suffering (in Pakistan). Policies aimed at harmonizing ethics standards for international research do not encapsulate some of the most important aspects of information practices for the research participants involved. We suggest shifting the focus from standards of one-way information delivery to a more process-oriented form of research ethics, where the contextual exploration of local needs through a mutual engagement with participants gains more ground.

scholarly journals Not Just a Headache: Qualitative Study About Web-Based Self-Presentation and Social Media Use by People With Migraine

10.2196/10479 ◽  
2019 ◽  
Vol 21 (6) ◽  
pp. e10479 ◽  
Author(s):  
Carly Pearson ◽  
Rosanna Swindale ◽  
Peter Keighley ◽  
Alison Ruth McKinlay ◽  
Leone Ridsdale
Keyword(s):  
Social Media ◽  
Qualitative Study ◽  
Media Use ◽  
Social Media Use ◽  
Web Based ◽  
Self Presentation
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