Open Science, Open Data, Science 2.0: Open Science, Open Data, Science 2.0: What Are They and Why Should Medical What Are They and Why Should Medical

Librarians Care?Librarians Care?

PNC 2010 Annual MeetingPNC 2010 Annual Meeting

Hope Leman, MLISHope Leman, MLIS

Research Information TechnologistResearch Information Technologist

Center for Health Research and QualityCenter for Health Research and QualitySamaritan Health ServicesSamaritan Health Services

Corvallis, OregonCorvallis, Oregon

Open Science, Open Data, Science 2.0: What Are They Open Science, Open Data, Science 2.0: What Are They and Why Should Medical Librarians Careand Why Should Medical Librarians Care??

This presentation will cover the This presentation will cover the topics below. All of these topics below. All of these movements will affect everyone movements will affect everyone in the world starting right now.in the world starting right now.

Science 2.0 Open Science Open Science Open DataOpen Data Medicine 2.0 Medicine 2.0 Health 2.0Health 2.0

Why You Should CareWhy You Should Care

Because at some point you will Because at some point you will become sickbecome sick

Because you may already be sickBecause you may already be sick Because someone you love may be Because someone you love may be

sicksick Because this is a revolution and Because this is a revolution and

revolutions have a tendency to revolutions have a tendency to change thingschange things

So What’s the Deal With All This So What’s the Deal With All This 2.0 and Open Stuff?2.0 and Open Stuff?

““2.0” connotes some degree of user-2.0” connotes some degree of user-generated content or some element generated content or some element of participation in a Web service or of participation in a Web service or activityactivity

““Open” connotes a state of free and Open” connotes a state of free and easy, noncommercial access and use easy, noncommercial access and use of materials generated by others of materials generated by others (e.g., open source software, open (e.g., open source software, open access scholarly journals)access scholarly journals)

Science 2.0 Science 2.0

A way researchers are A way researchers are beginning to harness wikis, beginning to harness wikis, blogs and other Web 2.0 blogs and other Web 2.0 technologies that is technologies that is transforming scientific transforming scientific activity.activity.

Open ScienceOpen Science

Open Science: Scientific Open Science: Scientific research conducted in the research conducted in the spirit of free and open source spirit of free and open source software. Leaders of this software. Leaders of this movement come from such movement come from such fields as chemistry and fields as chemistry and physics, but…physics, but…

biomedicine is catching up.biomedicine is catching up.

Open Notebook Science Open Notebook Science

This is a URL to a laboratory This is a URL to a laboratory notebook that is freely available and notebook that is freely available and indexed on common search engines. indexed on common search engines. In the spirit of transparency, In the spirit of transparency, information used by researchers to information used by researchers to determine their conclusions is made determine their conclusions is made available to the rest of the world. available to the rest of the world.

Medicine 2.0 Medicine 2.0

Encompasses applications, Encompasses applications, services and tools for healthcare services and tools for healthcare consumers, caregivers, patients, consumers, caregivers, patients, health professionals, and health professionals, and biomedical researchers.biomedical researchers.

Health 2.0 Health 2.0

Resembles Medicine 2.0, but is more Resembles Medicine 2.0, but is more commercial in nature and has a commercial in nature and has a greater emphasis on consumer-greater emphasis on consumer-generated content in healthcare. generated content in healthcare. Offshoots include participatory Offshoots include participatory medicine and the e-patient moment. medicine and the e-patient moment.

Let’s Look at What a Leading Thinker About Open Science Let’s Look at What a Leading Thinker About Open Science Says It Can Do: Jean-Claude Bradley, Associate Professor Says It Can Do: Jean-Claude Bradley, Associate Professor

of Chemistry at Drexel Universityof Chemistry at Drexel University

Generates transparency, which Generates transparency, which ensures…ensures…

that the methodology, that the methodology, observation, and collection of observation, and collection of data in an scientific undertaking data in an scientific undertaking are proper and under constant are proper and under constant scrutiny by a potentially scrutiny by a potentially worldwide pool of peersworldwide pool of peers

that fraud and sloppy science are that fraud and sloppy science are immediately obviousimmediately obvious

Open Science Leverages the Open Science Leverages the Power of CrowdsourcingPower of Crowdsourcing

The public availability and reusability of The public availability and reusability of scientific data leads toscientific data leads to

o Less wasteful duplication of effort and Less wasteful duplication of effort and more cost-effective use of resources more cost-effective use of resources

o Faster advancement of science because Faster advancement of science because the same data can be used by many the same data can be used by many teams for varying purposesteams for varying purposes

Examples of How Open Science is Done Examples of How Open Science is Done and the Benefits of Those Methodsand the Benefits of Those Methods

A scientific paper can be written on a wiki: A scientific paper can be written on a wiki: researchers worldwide can participate and correct researchers worldwide can participate and correct errors and add insights. Result: better, more errors and add insights. Result: better, more robust science.robust science.

A greater variety of inputs can lead to a more A greater variety of inputs can lead to a more authoritative final product: inputs can include authoritative final product: inputs can include such things as citations in standard journals; blog such things as citations in standard journals; blog posts by experts in the field; pages from open posts by experts in the field; pages from open notebooks; raw data. Result: better, more robust notebooks; raw data. Result: better, more robust science. science.

Open Science Leverages the Open Science Leverages the Power of Web 2.0 Power of Web 2.0

The exact procedures for experiments can be The exact procedures for experiments can be filmed and uploaded to YouTubefilmed and uploaded to YouTube

Links to full citations of articles can be inserted Links to full citations of articles can be inserted into shared documents (into shared documents (remember this termremember this term: : linked data)linked data)

Pre-prints of articles can be shared and discussed Pre-prints of articles can be shared and discussed on sites such as Nature Precedingson sites such as Nature Precedings

A video version of the final article can be viewed A video version of the final article can be viewed

in new forms of scholarly publications such asin new forms of scholarly publications such as JoVE: the Journal of Visualized Experiments JoVE: the Journal of Visualized Experiments

Health 2.0: Power to the PatientHealth 2.0: Power to the Patient

Online patient communities (such as those Online patient communities (such as those offered by the for-profit PatientsLikeMe for offered by the for-profit PatientsLikeMe for multiple sclerosis, Lou Gehrig’s Disease/ALS, and multiple sclerosis, Lou Gehrig’s Disease/ALS, and so on) enable sufferers to console and inform one so on) enable sufferers to console and inform one another in a combination of social solidarity and another in a combination of social solidarity and quite sophisticated crowdsourcing. As one scholar quite sophisticated crowdsourcing. As one scholar of Medicine 2.0 put it, these patient social of Medicine 2.0 put it, these patient social networks offer their users, “…highly nuanced, networks offer their users, “…highly nuanced, individualized, and timely information for coping individualized, and timely information for coping with the uncertainties of chronic illness with the uncertainties of chronic illness

trajectories, treatments and side effects.”trajectories, treatments and side effects.”

The Rise of the E-PatientThe Rise of the E-Patient Quote from Quote from E-patient Dave debronkart, Founding Member of the E-patient Dave debronkart, Founding Member of the

Society for Participatory MedicineSociety for Participatory Medicine and a survivor of kidney cancer: and a survivor of kidney cancer:

One of the most fundamental rights is the right to be fully engaged in One of the most fundamental rights is the right to be fully engaged in one's well-being, especially in moments of crisis when a life is at one's well-being, especially in moments of crisis when a life is at stake. My experience with moving my data from my hospital's PHR stake. My experience with moving my data from my hospital's PHR to Google Health gives us all good reason to be deeply concerned to Google Health gives us all good reason to be deeply concerned about how well the healthcare industry manages data quality. about how well the healthcare industry manages data quality. (And I mean YOUR data not "patients'" in the abstract. This is (And I mean YOUR data not "patients'" in the abstract. This is personal.)personal.)

I want to be able to audit my medical records, annotate them, I want to be able to audit my medical records, annotate them, export them easily for sharing with other providers, and any other export them easily for sharing with other providers, and any other innovation we can dream up that will help fulfill the promise of innovation we can dream up that will help fulfill the promise of Participatory Medicine, in which doctors and patients engage in a Participatory Medicine, in which doctors and patients engage in a thriving collaboration, each supporting the other.thriving collaboration, each supporting the other.

““The E-Patient Will See You Now, The E-Patient Will See You Now, Doctor.”Doctor.”

Quote from a presentation at the Medicine 2.0 International Quote from a presentation at the Medicine 2.0 International Congress September 2009:Congress September 2009:

Although health technology focus has recently been on EHRs, Although health technology focus has recently been on EHRs, EMRs and patient portals, there is an unprecedented EMRs and patient portals, there is an unprecedented opportunity to shift the traditional provider-centric opportunity to shift the traditional provider-centric paradigm to a collaborative patient/consumer-focused paradigm to a collaborative patient/consumer-focused model. Around the world, leading nations and private model. Around the world, leading nations and private companies are stepping beyond the EMR/EHR to provide companies are stepping beyond the EMR/EHR to provide health consumers with access and control over their own health consumers with access and control over their own personal health records (PHRs) – aimed at enabling the personal health records (PHRs) – aimed at enabling the consumer to manage and control the health of their self consumer to manage and control the health of their self and family. Through a PHR, the consumer is able to and family. Through a PHR, the consumer is able to maintain a holistic and transferable record which maintain a holistic and transferable record which encourages them to further build relationships with care encourages them to further build relationships with care providers through alternative means outside of the hospital providers through alternative means outside of the hospital walls…walls…

The E-Patient Continued…The E-Patient Continued…

As PHRs are starting to make waves, health As PHRs are starting to make waves, health providers and government partners will providers and government partners will need to consider several areas to be need to consider several areas to be revisited: healthcare services revisited: healthcare services reimbursement model, privacy and reimbursement model, privacy and security legislation, breadth of scope, and security legislation, breadth of scope, and funding. And as organizations prepare for funding. And as organizations prepare for the PHR, and consider related the PHR, and consider related investments, they need to consider their investments, they need to consider their overall readiness across several overall readiness across several dimensions including their organization, dimensions including their organization, stakeholders, broader environment, and stakeholders, broader environment, and the optimal approach to implementation. the optimal approach to implementation.

What We Mean When We Say What We Mean When We Say Health 2.0Health 2.0

Open DataOpen Data

Huge numbers of data are produced Huge numbers of data are produced today by government, researchers today by government, researchers and others. Thinkers like Victoria and others. Thinkers like Victoria Stodden argue that these data can Stodden argue that these data can and should be available for use and and should be available for use and reuse, but for this to happen the data reuse, but for this to happen the data need to be explicitly labeled as open need to be explicitly labeled as open from the start. from the start.

The Panton PrinciplesThe Panton Principles

The Panton Principles were officially promulgated in February The Panton Principles were officially promulgated in February 2010 and in coming years will almost certainly be regarded as a 2010 and in coming years will almost certainly be regarded as a foundational document of the Open Data movement. And Open foundational document of the Open Data movement. And Open Data is the way science is going.Data is the way science is going.

A key aim of the Panton Principles is the elimination of uncertainty A key aim of the Panton Principles is the elimination of uncertainty and hobbling doubt for researchers who wish to use data about and hobbling doubt for researchers who wish to use data about what exactly they are allowed to do with it. Here is some of the what exactly they are allowed to do with it. Here is some of the wording of the Panton Principles, “Where data or collections of wording of the Panton Principles, “Where data or collections of data are published it is critical that they be published with a clear data are published it is critical that they be published with a clear and explicit statement of the wishes and expectations of the and explicit statement of the wishes and expectations of the publishers with respect to re-use and re-purposing of individual publishers with respect to re-use and re-purposing of individual data elements, the whole data collection, and subsets of the data elements, the whole data collection, and subsets of the collection. This statement should be precise, irrevocable, and collection. This statement should be precise, irrevocable, and based on an appropriate and recognized legal statement in the based on an appropriate and recognized legal statement in the form of a waiver or license.” In other words, the Panton Principles form of a waiver or license.” In other words, the Panton Principles say to scientists, “Tell your peers from the get-go what the deal is say to scientists, “Tell your peers from the get-go what the deal is data-wise.”data-wise.”

National Science Foundation Directorate for Social, Behavioral & National Science Foundation Directorate for Social, Behavioral &

Economic Sciences Data Archiving PolicyEconomic Sciences Data Archiving Policy The National Science Foundation is committed to the principle that The National Science Foundation is committed to the principle that

the various forms of data collected with public funds belong in the the various forms of data collected with public funds belong in the public domain. Therefore, the Division of Social and Economic public domain. Therefore, the Division of Social and Economic Sciences has formulated a policy to facilitate the process of Sciences has formulated a policy to facilitate the process of making data that has been collected with NSF support available to making data that has been collected with NSF support available to other researchers. other researchers.

The purpose of this policy is to advance science by encouraging The purpose of this policy is to advance science by encouraging data sharing among researchers. Data sharing strengthens our data sharing among researchers. Data sharing strengthens our collective capacity to meet scientific standards of openness by collective capacity to meet scientific standards of openness by providing opportunities for further analysis, replication, providing opportunities for further analysis, replication, verification and refinement of research findings. These verification and refinement of research findings. These opportunities enhance the development of fields of research and opportunities enhance the development of fields of research and support the potential for cross-directorate activity. In addition, the support the potential for cross-directorate activity. In addition, the greater availability of research data will contribute to improved greater availability of research data will contribute to improved training for graduate and undergraduate students, and make training for graduate and undergraduate students, and make possible significant economies of scale through the secondary possible significant economies of scale through the secondary analysis of extant data. Finally, researchers have a special analysis of extant data. Finally, researchers have a special obligation to scientific openness and accountability when the obligation to scientific openness and accountability when the research is publicly funded. research is publicly funded.

How Disease Advocacy Groups How Disease Advocacy Groups Can Advance Open ScienceCan Advance Open Science

Consider adopting the Autism Speaks Open Access model:Consider adopting the Autism Speaks Open Access model:

““Policy on Public Access to the Research We Fund: Effective date: 12/03/08 Policy on Public Access to the Research We Fund: Effective date: 12/03/08

Autism Speaks funds biomedical research in order to better understand the causes of Autism Speaks funds biomedical research in order to better understand the causes of autism and to advance its prevention, treatment, and cure. The main output of this autism and to advance its prevention, treatment, and cure. The main output of this research is new knowledge. To ensure this knowledge can be accessed, read, research is new knowledge. To ensure this knowledge can be accessed, read, applied, and built upon in fulfillment of our goals, Autism Speaks expects its applied, and built upon in fulfillment of our goals, Autism Speaks expects its researchers to publish their findings in peer-reviewed journals. researchers to publish their findings in peer-reviewed journals.

In addition, it is a condition of Autism Speaks funding that all peer-reviewed articles In addition, it is a condition of Autism Speaks funding that all peer-reviewed articles supported in whole or in part by its grants must be made available in the PubMed supported in whole or in part by its grants must be made available in the PubMed Central online archive. Authors are to deposit an electronic copy of their final peer-Central online archive. Authors are to deposit an electronic copy of their final peer-reviewed manuscripts in PubMed Central immediately upon acceptance for journal reviewed manuscripts in PubMed Central immediately upon acceptance for journal publication…The manuscript is to be made publicly available in PubMed Central no publication…The manuscript is to be made publicly available in PubMed Central no later than 12 months after the official date of journal publication. This requirement later than 12 months after the official date of journal publication. This requirement applies to all Autism Speaks grants awarded after December 3, 2008.applies to all Autism Speaks grants awarded after December 3, 2008.

PubMed Central is a database of full-text biomedical journal articles available online PubMed Central is a database of full-text biomedical journal articles available online without a fee. It is hosted by the National Library of Medicine in the National without a fee. It is hosted by the National Library of Medicine in the National Institutes of Health. Once posted in PubMed Central, results of research become Institutes of Health. Once posted in PubMed Central, results of research become more accessible, prominent, and integrated, making it easier for scientists worldwide more accessible, prominent, and integrated, making it easier for scientists worldwide to pursue autism research. Equally important, families, clinicians, patients, to pursue autism research. Equally important, families, clinicians, patients, educators, and students reap the benefits of information arising from Autism Speaks educators, and students reap the benefits of information arising from Autism Speaks funding by accessing it on PubMed Central at no charge. funding by accessing it on PubMed Central at no charge.

PlayersPlayers

Names to know:Names to know:

Open Science: Jean-Claude Bradley, Cameron Open Science: Jean-Claude Bradley, Cameron Neylon, Michael Nielsen, Jonathan EisenNeylon, Michael Nielsen, Jonathan Eisen

Science Commons: John WilbanksScience Commons: John WilbanksMedicine 2.0: Gunther Eysenbach Medicine 2.0: Gunther Eysenbach Health 2.0: Matthew Holt Health 2.0: Matthew Holt Participatory Medicine: Ted Eytan, Gilles FrydmanParticipatory Medicine: Ted Eytan, Gilles FrydmanPatientsLikeMe: Ben and Jamie HeywoodPatientsLikeMe: Ben and Jamie HeywoodScience Librarianship: Dorothea SaloScience Librarianship: Dorothea Salo

Opportunities for librarians Opportunities for librarians to get into the gameto get into the game

Quote from homepage of data.gov:Quote from homepage of data.gov:

““With so much government data to work with, With so much government data to work with, developers are creating a wide variety of developers are creating a wide variety of

applications, mashups, and visualizations. From applications, mashups, and visualizations. From crime statistics by neighborhood to the best crime statistics by neighborhood to the best

towns to find a job to seeing the environmental towns to find a job to seeing the environmental health of your community–these applications health of your community–these applications

arm citizens with the information they need to arm citizens with the information they need to make decisions every day.” make decisions every day.”

Examples of apps on data.govExamples of apps on data.gov

Create custom-made tools for your Create custom-made tools for your patronspatrons

Using free sets of raw dataUsing free sets of raw data

Using other free appsUsing other free apps

And store all of that in your very And store all of that in your very own institutional repositoryown institutional repository

TakeawaysTakeaways

The way science is being done is changing The way science is being done is changing radically and librarians need to gear up to radically and librarians need to gear up to be able to find data and store and mash it be able to find data and store and mash it up and not just obtain articlesup and not just obtain articles

Librarians are well positioned to thrive in Librarians are well positioned to thrive in the era of Open Data and Open Sciencethe era of Open Data and Open Science

Librarians can develop Web services and Librarians can develop Web services and raise the profiles of their libraries and raise the profiles of their libraries and institutions therebyinstitutions thereby

Questions?Questions?