The rise of citizen scientists and patient initiated research

Emerging Patient-Driven Health Care Models: An Examination of Health Social Networks, Consumer Personalized Medicine and Quantified Self-Tracking, Int. J. Environ. Res. Public Health 2009, 6, 492-525; doi:10.3390/ijerph6020492

by KENT BOTTLES, MD in an article at KevinMD.com

Whether you call it Health 2.0, Medicine 2.0, or e-Health 2.0, the Internet is changing medicine in ways that challenge the status quo. This article explores how a group of amateurs who call themselves “health hackers” and “citizen scientists” are trying to use the Internet to connect with other patients, run experiments, and conduct clinical trials on their own diseases.

Dr. Gunther Eysenbach states “Medicine 2.0 applications, services and tools are Web-based services for health care consumers, caregivers, patients, health professionals, and biomedical researchers, that use Web 2.0 technologies as well as semantic web and virtual reality tools, to enable and facilitate specifically social networking, participation, apomediation, collaboration, and openness within and between these user groups.” One review examined 46 different definitions of Health 2.0, and Eysenbach’s definition does not emphasize a key component of the concept: amateurs can use these new Internet tools to do work that in the past was only done by professionals….

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Charles Blanke, MD, Director of Gastrointestinal Oncology at the Oregon Cancer Institute summarizes the advantages and disadvantages of their patient-initiated approach:

This is powerful and compelling work! I remain incredibly impressed by the data-coordinating abilities of the Life Raft personnel. I see the major purpose of this sort of data as hypothesis generating. Unfortunately, it cannot be free of bias and thus cannot stand by itself, but it certainly can point investigators and the Company in the right direction and let us know what we need to be looking at more closely. Thus, its importance cannot be overstated….

,,,The tension between the traditional approach to medical research and patient-initiated research can only be resolved by cooperation and two-way communication between the two groups. The Mayo Clinic and PXE examples clearly show that both groups can benefit by meaningful and respectful partnership. The AIDS and ALS examples demonstrate that patients with few options and new Internet tools will continue to push the traditional research community to be open to new ideas, new approaches, and new possibilities. Gilles Frydman, founder of the Association of Cancer Online Resources, has stated, “Better-informed people are more willing to participate in the advancement of science. Those patients taking Gleevec do not consider themselves guinea pigs. They are recipients of experimental medicine.”…

Related articles

• DocGreet Steadily Grows as the Leader in Health 2.0 and Medical Social Media (prweb.com)
• Connect with Project HealthDesign at Health 2.0 (projecthealthdesign.typepad.com)
• Reflections on the Medicine 2.0 conference at Stanford #med2 (medicineandtechnology.com)
• Health IT and Patient Safety: Building Safer Systems for Better Care (jflahiff.wordpress.com)
• During the Fifth Annual Health 2.0 Conference, Dr. James Mault of HealthyCircles will Showcase Innovative Technology that will Help Transform Health Care (prweb.com)

Medicine and Social Media Links from Science Roll

The Web site Science Roll is published by “ Bertalan Meskó,MD. He  graduated from the University of Debrecen, Medical School and Health Science Center in 2009 and started PhD in the field of personalized genomics. He is the founder of Webicina.com, a free service curating medical social media resources in 17 languages. He thinks medical education and communication between physicians and patients will be revolutionized with the tools and services of web 2.0.”

The Medicine and Social Media page includes links in the following areas

• The first Internet in Medicine University Credit Course:
• Education and RSS
• Wikis, medical databases
• Medical search engines, tools
• Medical communities
• Podcast, Vidoecast
• Open access and journalism
• Sites, links, news, and reviews
• Online docs and reputations

 

Mobile Health Slideshow and Infographics (with related resources)

From the November 28th 2011 Science Roll blog item by Dr. Bertalan Mesko

Since around 2009, it has been quite clear that mobile phones would not only change the way we check healthcare information online, but the way we do anything online so relevant statistics and analyses are crucial in order to be able to analyze the situation and draw useful conclusions. I’ve recently come across a great presentation focusing on mobile health by Daniel Hooker, health librarian.

And Andrew Spong shared an infographics by Manhattan Research that presents the state of mobile health. 85% of people use social media for health-related reasons on mobiles. Click on the image for larger version.

Related Resources 

• Health Apps (free and low cost) at jmflahiff.wordpress.com

Related articles

• Mobile Health (Infographic) (worldofdtcmarketing.com)
• FDA Cleared Way for Health Monitoring Mobile Health Apps (knowledgetree12.wordpress.com)
• Mobile health has huge potential in the Middle East, industry study says (nfcdata.com)
• How mobile health can help child abuse victims (kevinmd.com)
• Call for mobile phone health warnings despite ‘inconclusive’ evidence (telegraph.co.uk)
• How Text Messages Could Change Global Healthcare (jflahiff.wordpress.com)