HIV cure research community engagement in North Carolina: a mixed-methods evaluation of a crowdsourcing contest

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Abstract

Objectives

The purpose of this study was to evaluate the feasibility of using a crowdsourcing contest to promote HIV cure research community engagement.

Methods

Crowdsourcing contests are open calls for community participation to achieve a task, in this case to engage local communities about HIV cure research. Our contest solicited images and videos of what HIV cure meant to people. Contestants submitted entries to IdeaScale, an encrypted online contest platform. We used a mixed-methods study design to evaluate the contest. Engagement was assessed through attendance at promotional events and social media user analytics. Google Analytics measured contest website user-engagement statistics. Text from contest video entries was transcribed, coded and analysed using MAXQDA.

Results

There were 144 attendees at three promotional events and 32 entries from 39 contestants. Most individuals who submitted entries were black ( n=31), had some college education ( n=18) and were aged 18–23 years ( n=23). Social media analytics showed 684 unique page followers, 2233 unique page visits, 585 unique video views and an overall reach of 80,624 unique users. Contest submissions covered themes related to the community's role in shaping the future of HIV cure through education, social justice, creativity and stigma reduction.

Conclusion

Crowdsourcing contests are feasible for engaging community members in HIV cure research. Community contributions to crowdsourcing contests provide useful content for culturally relevant and locally responsive research engagement.

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Most cited references 24

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Crowdsourced Health Research Studies: An Important Emerging Complement to Clinical Trials in the Public Health Research Ecosystem

Melanie Swan (2012)

Background Crowdsourced health research studies are the nexus of three contemporary trends: 1) citizen science (non-professionally trained individuals conducting science-related activities); 2) crowdsourcing (use of web-based technologies to recruit project participants); and 3) medicine 2.0 / health 2.0 (active participation of individuals in their health care particularly using web 2.0 technologies). Crowdsourced health research studies have arisen as a natural extension of the activities of health social networks (online health interest communities), and can be researcher-organized or participant-organized. In the last few years, professional researchers have been crowdsourcing cohorts from health social networks for the conduct of traditional studies. Participants have also begun to organize their own research studies through health social networks and health collaboration communities created especially for the purpose of self-experimentation and the investigation of health-related concerns. Objective The objective of this analysis is to undertake a comprehensive narrative review of crowdsourced health research studies. This review will assess the status, impact, and prospects of crowdsourced health research studies. Methods Crowdsourced health research studies were identified through a search of literature published from 2000 to 2011 and informal interviews conducted 2008-2011. Keyword terms related to crowdsourcing were sought in Medline/PubMed. Papers that presented results from human health studies that included crowdsourced populations were selected for inclusion. Crowdsourced health research studies not published in the scientific literature were identified by attending industry conferences and events, interviewing attendees, and reviewing related websites. Results Participatory health is a growing area with individuals using health social networks, crowdsourced studies, smartphone health applications, and personal health records to achieve positive outcomes for a variety of health conditions. PatientsLikeMe and 23andMe are the leading operators of researcher-organized, crowdsourced health research studies. These operators have published findings in the areas of disease research, drug response, user experience in crowdsourced studies, and genetic association. Quantified Self, Genomera, and DIYgenomics are communities of participant-organized health research studies where individuals conduct self-experimentation and group studies. Crowdsourced health research studies have a diversity of intended outcomes and levels of scientific rigor. Conclusions Participatory health initiatives are becoming part of the public health ecosystem and their rapid growth is facilitated by Internet and social networking influences. Large-scale parameter-stratified cohorts have potential to facilitate a next-generation understanding of disease and drug response. Not only is the large size of crowdsourced cohorts an asset to medical discovery, too is the near-immediate speed at which medical findings might be tested and applied. Participatory health initiatives are expanding the scope of medicine from a traditional focus on disease cure to a personalized preventive approach. Crowdsourced health research studies are a promising complement and extension to traditional clinical trials as a model for the conduct of health research.

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A 10-year systematic review of HIV/AIDS mass communication campaigns: Have we made progress?

Seth Noar, Philip Palmgreen, Melissa Chabot … (2015)

The purpose of the current study was to conduct a 10-year systematic review of HIV/AIDS mass communication campaigns focused on sexual behavior, HIV testing, or both (1998-2007) and to compare the results with the last comprehensive review of such campaigns, conducted by Myhre and Flora (2000). A comprehensive search strategy yielded 38 HIV/AIDS campaign evaluation articles published in peer-reviewed journals, representing 34 distinct campaign efforts conducted in 23 countries. The articles were coded on a variety of campaign design and evaluation dimensions by two independent coders. Results indicated that compared with the previous systematic review (1986-1998 period), campaigns increasingly have employed the following strategies: (1) targeted defined audiences developed through audience segmentation procedures; (2) designed campaign themes around behavior change (rather than knowledge change); (3) used behavioral theories; (4) achieved high message exposure; (5) used stronger research designs for outcome evaluation; and (6) included measures of behavior (or behavioral intentions) in outcome assessments. In addition, an examination of 10 campaign efforts that used more rigorous quasi-experimental designs revealed that the majority (8 of 10) demonstrated effects on behavior change or behavioral intentions. Despite these positive developments, most HIV/AIDS campaigns continue to use weak (i.e., preexperimental) outcome evaluation designs. Implications of these results for improved design, implementation, and evaluation of HIV/AIDS campaign efforts are discussed.

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More than just tracking time: Complex measures of user engagement with an internet-based health promotion intervention.

Nina Baltierra, Kathryn E Muessig, Emily Pike … (2016)

There has been a rise in internet-based health interventions without a concomitant focus on new methods to measure user engagement and its effect on outcomes. We describe current user tracking methods for internet-based health interventions and offer suggestions for improvement based on the design and pilot testing of healthMpowerment.org (HMP).

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Author and article information

Journal

Journal ID (nlm-ta): J Virus Erad

Journal ID (iso-abbrev): J Virus Erad

Journal ID (publisher-id): JOURNAL OF VIRUS ERADICATION

Title: Journal of Virus Eradication

Publisher: Mediscript Ltd

ISSN (Print): 2055-6640

ISSN (Electronic): 2055-6659

Publication date (Electronic, collection): October 2017

Publication date (Electronic, pub): 1 October 2017

Volume: 3

Issue: 4

Pages: 223-228

Affiliations

[ ¹ ] University of North Carolina , Chapel Hill, NC, USA

[ ² ] Liberty University , Lynchburg, VA, USA

Author notes

[* ]Corresponding author: Allison Mathews, Institute for Global Health and Infectious Disease, Department of Social Medicine, School of Medicine , UNC Chapel Hill , Chapel Hill, NC27599-7064, USAEmail: amathews@ 123456email.unc.edu

Article

DOI: 10.1016/S2055-6640(20)30318-6

PMC ID: 5632550

PubMed ID: 29057087

SO-VID: 364fc833-4b8a-4a21-a2da-3f1339cf35af

License:

This is an open access article published under the terms of a Creative Commons License.

HIV cure research community engagement in North Carolina: a mixed-methods evaluation of a crowdsourcing contest

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Abstract

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Most cited references 24

Crowdsourced Health Research Studies: An Important Emerging Complement to Clinical Trials in the Public Health Research Ecosystem

A 10-year systematic review of HIV/AIDS mass communication campaigns: Have we made progress?

More than just tracking time: Complex measures of user engagement with an internet-based health promotion intervention.

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