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 l July 31, 2008 l 2

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.comTim 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

4


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

ProgressionRate


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

1. Addresses the social and emotional aspects of information seeking and acquisition behaviors.

2. A wide range of tools and resources should also be used to educate consumers about health issues and improve health literacy.

3. Patients' and consumers' information needs and usability concerns

4. Resources should aim at tailoring information content and presentation to intended users, or targeted audiences.

5. Consumer health vocabularies, information retrieval, and readability.

6. More accurate, well-publicized information quality indicators will benefit health consumers.

7. 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.”

web 2.0 in clinical research

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