“Medical Crowdsourcing” via CureTogether – the new cheap data collection method

Written by on April 17, 2012 in in the news, research with 1 Comment

A recent article in the Dermatology Online Journal introduced me to a new online support group site. Apparently curetogether.com is a major medical crowdsourcing site.

What is crowdsourcing?

Well crowdsourcing is a new buzzword which basically means to get your information from the “crowd” or as many people as you can. Online this term generally means something like “just asking everyone on the email list” or “post to that forum where thousands will see it”.

The premise of the paper is that over time, the authors hope that online groups will become the source of high volume, high quality clinical trial data.

Large scale clinical trials are extremely expensive. There may well be scope for survey based trials to become cheaper and more convenient by using online sites like curetogether.com

CureTogether Rosacea Section

Indeed curetogether.com does have a small rosacea section where you can list your symptom severity in order to gain a score and compare yourself to other members. Around 180 members have listed their symptoms thus;

 

cure-together

(click for larger image)

Other Related Research

I did also find a somewhat related interesting project based at CureTogether;

The Skin Disease Race is ON!

CureTogether is excited to announce a new research project we’re collaborating on. Researchers Suephy Chen, Adam Sperduto, and Bob Swerlick at Emory University are doing a study to compare whether online recruiting methods can beat their traditional in-clinic recruiting methods.

Abstract

Letter: Crowdsourcing for research data collection in rosacea

April W Armstrong MD MPH, Caitlin T Harskamp BA, Safia Cheeney MS, Clayton W Schupp PhD

Dermatology Online Journal 18 (3): 15

Abstract: Several medical crowdsourcing sites are available to patients online, but few studies in the literature have compared crowdsourced data to clinical trials. Herein, we compare data from rosacea patients from a major medical crowdsourcing site with those from randomized controlled trials.

Crowdsourcing in medical research is the process of outsourcing health-related data collection to groups of people or communities. Crowdsourced data have the potential to inform clinicians on treatment effectiveness in real-world patient populations. Although several medical crowdsourcing sites are available to patients online, few studies in the literature have compared crowdsourced data to clinical trials [1, 2]. In this study, we examined how data from rosacea patients from a major medical crowdsourcing site, CureTogether (curetogether.com), compare those from randomized controlled trials.

Whereas limitations of the currently available crowdsourced data include low numbers of patient responses, unspecified medication dosages and duration, and unknown medication adherence rates, improvements in crowdsourcing over time will likely enable collection of high-volume, high-quality data that reflect real-world patient experiences.

Furthermore, different outcomes measures used on the crowdsourcing site from those in the clinical trials inhibit direct comparison of the treatment responses.

For example, whereas lesion count or Investigator Global Assessment was used in the clinical trials, Likert scale was used on the crowdsourcing site. Thus, innovations in deploying validated measures for crowdsourcing – although still enticing the online users – will be key to collect high-quality crowdsourced data. In summary, crowdsourcing has the potential to yield high-volume data from diverse patient populations. With future improvements in the standardization of data collection, crowdsourcing could provide valuable insight into real-world treatment effectiveness.

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About the Author

About the Author: David Pascoe started the Rosacea Support Group in October 1998. .

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1 Reader Comment

  1. Brady Barrows says:

    Interesting. So much to learn. You continue to amaze me with your knowledge of the cloud, or should we say the ‘crowd.’

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