Web 2.0 In Clinical Research

Web 2.0 in Clinical Research
John Sharp, MSSA, PMP
Manager, Research Informatics
Quantitative Health Sciences
July 31, 2008

Web 2.0 in Clinical Research - Outline
Introduction to Web 2.0
Web 2.0 in Healthcare – Health 2.0
Web 2.0 as a disruptive technology
Current Applications to Research
Future Possibilities

Core Principles of Web 2.0
The Web as Platform
You control your own data
Services, not packaged software
Architecture of participation
Cost-effective scalability
Remixable data source and data transformation
Harnessing collective intelligence
oreilly.com Tim O’Reilly

Blogs – own content
Wiki – participatory content
Google, Gmail, maps, Ajax – enriching the user experience
Social networking - MySpace
Photo sharing, tagging - Flickr, del.icio.us
Video, tagging, social network – Youtube
Podcasting
RSS – Real Simple Syndication – subscribing to the content you want

From Web 2.0 to Health 2.0
First Health 2.0 conference - September 2007
Application of Web 2.0 tools to health care, especially consumers
Social networks for those with the same condition
Blogs to record their experiences
Vertical search – healthcare-specific
Consumer Driven Healthcare, Hospital and provider ratings

Self Care Management - Health 2.0

PatientsLikeMe.com - Detail on condition Progression Rate

Genetics – Personalized Testing - 23andMe

Health Care Blogs – Patients

Health Care Blogs - Physicians

Blogs – Healthcare Information Technology

Vertical Search – Healia.com

Google Health From PHR

RevolutionHealth.com – Hybrid example

Physician/Provider Tools For physicians only, provides profile, publications, clinical trials, and connections with others.

Physician Social Networks
Great potential for knowledge sharing, solving rare cases
Limited to physicians only – allows for more openness
Time challenge for physicians
Opportunity to get referrals
Based on profile
Based on publications
Based on clinical trials, research interests

Wikis for knowledge sharing in medicine

Web 2.0 as a disruptive technology

Applications to Medical Research
Social Networking
Knowledge sharing
Tagging
Image sharing
Videos and podcasts for education
Research tools – Google Maps, other mashups
As a topic of research
Future of publishing

Social Networking in Research – CTSC

Social Networking - Research

Public Library of Science – Also on Facebook

Wikis for Technical Knowledge Sharing

Tagging – del.icio.us.com

Image Sharing

http://www.bigthink.com/science-technology/medicine-biology Knowledge Sharing Through Videos

Research Tools – Google Maps - HealthMap - mashup

Recommendations for Consumer Health Research
Addresses the social and emotional aspects of information seeking and acquisition behaviors.
A wide range of tools and resources should also be used to educate consumers about health issues and improve health literacy.
Patients' and consumers' information needs and usability concerns
Resources should aim at tailoring information content and presentation to intended users, or targeted audiences.
Consumer health vocabularies, information retrieval, and readability.
More accurate, well-publicized information quality indicators will benefit health consumers.
Health information needs of caregivers, family members, and peer groups.
Health 2.0 as a Research Topic

Social Uses of Personal Health Information Within PatientsLikeMe, an Online Patient Community: What Can Happen When Patients Have Access to One Another’s Data
Results: Qualitative analysis of a sample of 123 comments (about 2% of the total) posted within the community revealed a variety of commenting and questioning behaviors by patient members. Members referenced data to locate others with particular experiences to answer specific health-related questions, to proffer personally acquired disease-management knowledge to those most likely to benefit from it, and to foster and solidify relationships based on shared concerns.
Conclusions: Few studies examine the use of personal health information by patients themselves. This project suggests how patients who choose to explicitly share health data within a community may benefit from the process, helping them engage in dialogues that may inform disease self-management.
J Med Internet Res 2008;10(3):e15
Health 2.0 as a Research Topic

Web 2.0 in Research – Available Now
RSS feeds as a method of notification
Collaborative writing – Google Docs
Bookmarks, tags for relevant articles
Slide sharing
Open Access

Using RSS feeds to scan Journal articles

Use of Google Docs in Collaborative Authoring

Knowledge Sharing – SlideShare.net

The Future of Medical Publishing – Open Access
The Case in Favor: Unrestricted Information
Documenting the talks and discussions that take place around articles (e.g., in Web communities) expands the original content, facilitating scientific collaboration and furthering research
The Case Against: Unsustainable Idealism
there is no evidence to prove that it increases the dissemination of information, speeds research, or improves patient care

Web 2.0 in Clinical Research - Conclusions
Many useful tools – need to be utilized as solutions, not just because they are new
Innovative – helpful in creating an “architecture of participation” but can cause disruptive change in health care
Enhanced knowledge sharing through all mediums
Limited business model – some will fail, some will consolidate
Potential subject for research in the future

Web 2.0 - Where to start
Create RSS feeds to topics of interest
Read and comment on blogs
Create your own blog
Contribute to a Wiki in your knowledge area
Check out podcasts, video sites
Join a social network – LinkedIn.com, BiomedExperts, Within3
Evaluate the value for yourself

Web 2.0 Books
Wikinomics - How Mass Collaboration Changes Everything by Don Tapscott & Anthony Williams
Everything is Miscellaneous: The Power of the New Digital Disorder by Dan Weinberger
The World is Flat by Tom Friedman
“ In the flat world, more and more business will be done through collaborations within and between companies for a very simple reason:
“ The next layers of value creation… are becoming so complex that no single firm or department is going to be able to master them alone.”

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Web 2.0 In Clinical Research

by John Sharp on Jul 31, 2008

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