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Crowdsourced health research studies: an important emerging complement to clinical trials in the public health research ecosystem.

Swan M - J. Med. Internet Res. (2012)

Bottom Line: Papers that presented results from human health studies that included crowdsourced populations were selected for inclusion.Large-scale parameter-stratified cohorts have potential to facilitate a next-generation understanding of disease and drug response.Participatory health initiatives are expanding the scope of medicine from a traditional focus on disease cure to a personalized preventive approach.

View Article: PubMed Central - HTML - PubMed

Affiliation: MS Futures Group, Palo Alto, CA 94306, United States. m@melanieswan.com

ABSTRACT

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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Related in: MedlinePlus

Charts comprising the personal profile of a user on PatientsLikeMe (Image Source: Frost & Massagli, Journal of Medical Internet Research [74], licensed under Creative Commons Attribution License 2.0).
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figure1: Charts comprising the personal profile of a user on PatientsLikeMe (Image Source: Frost & Massagli, Journal of Medical Internet Research [74], licensed under Creative Commons Attribution License 2.0).

Mentions: PatientsLikeMe (PLM) is currently the largest operator of crowdsourced health research studies with one of the largest open patient registries and online health social networks (more than 125,000 members in 1000 condition-based communities as of January 2012). Amongst other initiatives, the company aims to connect 1 million rare disease patients by the end of 2012 [27]. Members may enter demographic information and track their treatments, symptoms, and outcomes, and find other patients like themselves matched by demographic and clinical characteristics (see Figure 1). Over 25 PLM-authored papers have been published in peer-reviewed journals such as the Journal of Medical Internet Research, Nature Biotechnology, the Proceedings of the National Academy of Sciences, and recognized neurology journals, many of which present the results of researcher-organized crowdsourced studies.


Crowdsourced health research studies: an important emerging complement to clinical trials in the public health research ecosystem.

Swan M - J. Med. Internet Res. (2012)

Charts comprising the personal profile of a user on PatientsLikeMe (Image Source: Frost & Massagli, Journal of Medical Internet Research [74], licensed under Creative Commons Attribution License 2.0).
© Copyright Policy - open-access
Related In: Results  -  Collection

License 1 - License 2
Show All Figures
getmorefigures.php?uid=PMC3376509&req=5

figure1: Charts comprising the personal profile of a user on PatientsLikeMe (Image Source: Frost & Massagli, Journal of Medical Internet Research [74], licensed under Creative Commons Attribution License 2.0).
Mentions: PatientsLikeMe (PLM) is currently the largest operator of crowdsourced health research studies with one of the largest open patient registries and online health social networks (more than 125,000 members in 1000 condition-based communities as of January 2012). Amongst other initiatives, the company aims to connect 1 million rare disease patients by the end of 2012 [27]. Members may enter demographic information and track their treatments, symptoms, and outcomes, and find other patients like themselves matched by demographic and clinical characteristics (see Figure 1). Over 25 PLM-authored papers have been published in peer-reviewed journals such as the Journal of Medical Internet Research, Nature Biotechnology, the Proceedings of the National Academy of Sciences, and recognized neurology journals, many of which present the results of researcher-organized crowdsourced studies.

Bottom Line: Papers that presented results from human health studies that included crowdsourced populations were selected for inclusion.Large-scale parameter-stratified cohorts have potential to facilitate a next-generation understanding of disease and drug response.Participatory health initiatives are expanding the scope of medicine from a traditional focus on disease cure to a personalized preventive approach.

View Article: PubMed Central - HTML - PubMed

Affiliation: MS Futures Group, Palo Alto, CA 94306, United States. m@melanieswan.com

ABSTRACT

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.

Show MeSH
Related in: MedlinePlus