The presentation discusses open science, open data, and the concepts of Science 2.0 and Health 2.0, emphasizing their impact on medical librarians and the healthcare landscape. It highlights the shift towards user-generated content, transparency in scientific research, the importance of data availability, and the growing influence of patients as active participants in their healthcare through technology. The document urges librarians to adapt to these changes to enhance their ability to manage and share data effectively.

1. Open Science, Open Data, Science 2.0: What Are They and Why Should Medical Librarians Care? PNC 2010 Annual Meeting Hope Leman, MLIS Research Information Technologist Center for Health Research and Quality Samaritan Health Services Corvallis, Oregon

2. Open Science, Open Data, Science 2.0: What Are They and Why Should Medical Librarians Care ? This presentation will cover the topics below. All of these movements will affect everyone in the world starting right now. Science 2.0 Open Science Open Data Medicine 2.0 Health 2.0

3. Why You Should Care Because at some point you will become sick Because you may already be sick Because someone you love may be sick Because this is a revolution and revolutions have a tendency to change things

4. So What’s the Deal With All This 2.0 and Open Stuff? “ 2.0” connotes some degree of user-generated content or some element of participation in a Web service or activity “ Open” connotes a state of free and easy, noncommercial access and use of materials generated by others (e.g., open source software, open access scholarly journals)

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

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

7. biomedicine is catching up.

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

9. Medicine 2.0 Encompasses applications, services and tools for healthcare consumers, caregivers, patients, health professionals, and biomedical researchers.

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

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

12. Generates transparency, which ensures… that the methodology, observation, and collection of data in an scientific undertaking are proper and under constant scrutiny by a potentially worldwide pool of peers that fraud and sloppy science are immediately obvious

13. Open Science Leverages the Power of Crowdsourcing The public availability and reusability of scientific data leads to Less wasteful duplication of effort and more cost-effective use of resources Faster advancement of science because the same data can be used by many teams for varying purposes

14. Examples of How Open Science is Done and the Benefits of Those Methods A scientific paper can be written on a wiki: researchers worldwide can participate and correct errors and add insights. Result: better, more robust science. A greater variety of inputs can lead to a more authoritative final product: inputs can include such things as citations in standard journals; blog posts by experts in the field; pages from open notebooks; raw data. Result: better, more robust science.

15. Open Science Leverages the Power of Web 2.0 The exact procedures for experiments can be filmed and uploaded to YouTube Links to full citations of articles can be inserted into shared documents ( remember this term : linked data) Pre-prints of articles can be shared and discussed on sites such as Nature Precedings A video version of the final article can be viewed in new forms of scholarly publications such as JoVE: the Journal of Visualized Experiments

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

17. The Rise of the E-Patient Quote from E-patient Dave debronkart, Founding Member of the Society for Participatory Medicine and a survivor of kidney cancer: 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 stake. My experience with moving my data from my hospital's PHR to Google Health gives us all good reason to be deeply concerned about how well the healthcare industry manages data quality. (And I mean YOUR data not "patients'" in the abstract. This is personal.) I want to be able to audit my medical records, annotate them, export them easily for sharing with other providers, and any other innovation we can dream up that will help fulfill the promise of Participatory Medicine, in which doctors and patients engage in a thriving collaboration, each supporting the other.

18. “ The E-Patient Will See You Now, Doctor.” Quote from a presentation at the Medicine 2.0 International Congress September 2009: Although health technology focus has recently been on EHRs, EMRs and patient portals, there is an unprecedented opportunity to shift the traditional provider-centric paradigm to a collaborative patient/consumer-focused model. Around the world, leading nations and private companies are stepping beyond the EMR/EHR to provide health consumers with access and control over their own personal health records (PHRs) – aimed at enabling the consumer to manage and control the health of their self and family. Through a PHR, the consumer is able to maintain a holistic and transferable record which encourages them to further build relationships with care providers through alternative means outside of the hospital walls…

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

20. What We Mean When We Say Health 2.0

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

22. The Panton Principles The Panton Principles were officially promulgated in February 2010 and in coming years will almost certainly be regarded as a foundational document of the Open Data movement. And Open Data is the way science is going. A key aim of the Panton Principles is the elimination of uncertainty 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 wording of the Panton Principles, “Where data or collections of data are published it is critical that they be published with a clear and explicit statement of the wishes and expectations of the publishers with respect to re-use and re-purposing of individual data elements, the whole data collection, and subsets of the collection. This statement should be precise, irrevocable, and based on an appropriate and recognized legal statement in the 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 data-wise.”

23. National Science Foundation Directorate for Social, Behavioral & Economic Sciences Data Archiving Policy The National Science Foundation is committed to the principle that the various forms of data collected with public funds belong in the public domain. Therefore, the Division of Social and Economic Sciences has formulated a policy to facilitate the process of making data that has been collected with NSF support available to other researchers. The purpose of this policy is to advance science by encouraging data sharing among researchers. Data sharing strengthens our collective capacity to meet scientific standards of openness by providing opportunities for further analysis, replication, verification and refinement of research findings. These opportunities enhance the development of fields of research and support the potential for cross-directorate activity. In addition, the greater availability of research data will contribute to improved training for graduate and undergraduate students, and make possible significant economies of scale through the secondary analysis of extant data. Finally, researchers have a special obligation to scientific openness and accountability when the research is publicly funded.

24. How Disease Advocacy Groups Can Advance Open Science Consider adopting the Autism Speaks Open Access model: “ 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 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, applied, and built upon in fulfillment of our goals, Autism Speaks expects its researchers to publish their findings in peer-reviewed journals. 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 Central online archive. Authors are to deposit an electronic copy of their final peer-reviewed manuscripts in PubMed Central immediately upon acceptance for journal 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 applies to all Autism Speaks grants awarded after December 3, 2008. 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 Institutes of Health. Once posted in PubMed Central, results of research become more accessible, prominent, and integrated, making it easier for scientists worldwide to pursue autism research. Equally important, families, clinicians, patients, educators, and students reap the benefits of information arising from Autism Speaks funding by accessing it on PubMed Central at no charge.

25. Players Names to know: Open Science: Jean-Claude Bradley, Cameron Neylon, Michael Nielsen, Jonathan Eisen Science Commons: John Wilbanks Medicine 2.0: Gunther Eysenbach Health 2.0: Matthew Holt Participatory Medicine: Ted Eytan, Gilles Frydman PatientsLikeMe: Ben and Jamie Heywood Science Librarianship: Dorothea Salo

26. Opportunities for librarians to get into the game Quote from homepage of data.gov: “ With so much government data to work with, developers are creating a wide variety of applications, mashups, and visualizations. From crime statistics by neighborhood to the best towns to find a job to seeing the environmental health of your community–these applications arm citizens with the information they need to make decisions every day.”

27. Examples of apps on data.gov

28. Create custom-made tools for your patrons

29. Using free sets of raw data

30. Using other free apps

31. And store all of that in your very own institutional repository

32. Takeaways The way science is being done is changing radically and librarians need to gear up to be able to find data and store and mash it up and not just obtain articles Librarians are well positioned to thrive in the era of Open Data and Open Science Librarians can develop Web services and raise the profiles of their libraries and institutions thereby

33. Questions?