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

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

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

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

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

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

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

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

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

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.

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

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

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

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

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

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

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.”

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.”