2. BioTIFF: An Articulated and Self-Documenting Electronic Personal Health Record Peter Pennefather and West Suhanic, Lesley Dan Faculty of Pharmacy, University of Toronto Laboratory for Collaborative Diagnostics (LCD)‏ Look, Collaborate, Decide www.lcd.utoronto.ca

3. Laboratory for Collaborative Diagnostics BioTIFF Overview Web 3.0: a Data Web Supporting Distributed Cognition Outline

4. Laboratory for Collaborative Diagnostics

7. BioTIFF Overview

11. Nature Biotechnology 22 , 1253 - 1259 (2004) Systems biology in drug discovery Eugene C Butcher, Ellen L Berg & Eric J Kunkel

13. (Topic)‏ Specific bio-medically definable (biomarkers, vital signs) health (Context/Community) diverse stakeholders & caregiver perspectives and sense making (Task)‏ adapting health care system to patient needs BioTIFF will Enable Personal Health Narratives and‏ Collaborative Evaluation of Health Care Trajectory

14. Web 3.0: a Data Web supporting Distributed Cognition

15. Web 1.0 Web 2.0 Web 3.0 1990-2000 2000-2010 2010-2020 Read Write Web Social Web Semantic We b Gustini, 2008 Cho and Gustini 2008, JCHLA/JABJSC 29: 13-18

16. Knowledge Translation Framework Learning Problem Solving Diagnostics Discovery Comprehension Discovery Initiation (codification) Application Definition Sensing Dialogue Analysis Design Analysis (abstraction) Synthesis Decision Making Diagnosis‏ Distribution Evaluation Action Planning Reporting (diffusion)‏ Web 3.0* A Collaborative, Interpretive, Dialogical, Data Web Leading to Shared Understanding (Distributed Cognition)‏

17. Data Web services built on articulated information sources with trusted provenance will enable distributed cognition based on knowing : - what the care is about (identity/representation) (codification)‏ - how the care works (production) (abstraction)‏ - how the care is used (consumption/governance) (diffusion)‏ Community of Practice Circuit of Culture Information Space (Wenger) (Du Gay et al.) (Boisot)‏

19. Personalized Narrative Diagnostic Imaging: Can it Mediate Patient/System Dialogue An extension of medical imaging systems to supplement biophysical data with socio-technical data concerning the patients experience and world view as well as their goals of care ; Chap 6: Pennefather and Suhanic in: Mediating Health Information The Go-Betweens in a Changing Socio-Technical Landscape Edited by: Nadine Wathen, Sally Wyatt and Ronna Harris http://www.palgrave.com/products/Title.aspx?PID=285092

20. ISO defines an EHR as “a repository of patient data in digital form, stored and exchanged securely and accessible by multiple authorized users. It contains retrospective, concurrent, and prospective information and its primary purpose is to support continuing, efficient and quality integrated health care”. A PHR is an EHR where the data in the record is controlled by the patient and contains data at least partially entered by the patient (ISO)‏ National EHR system standards like Health Infoway aim to ensure that EHRs are 1) patient centric and engage/empower patients; 2) share common core information fields 3) use common standards for encoding those fields; 4) are secure and protect participant privacy; 5) are open, transparent, interoperable. They may be: 1) time oriented, 2) source oriented or 3) problem oriented . Can they be Narrative Oriented

21. Beyond a Record of Healthcare Data – Towards a Narrative of Healthcare Meaning A key aspect of health care self-management is making sense of and owning personal health care information and data Sense/Meaning/Credibility/Relevance only exist within the context of a community that shares information An authentic personal narrative of health care meaning is defined dialogically within a community (e.g. the circle of care)‏

22. Health Care Meaning and PHRs

23. Records used in problem solving contain: Subjective information , Objective information , Interpretive Information (e.g assessment/diagnosis/synthesis/conclusion/speculation); Action/Management Plan Information Outcomes Information .

24. Objective Patient Summary Information Records like CCR contain: history which can be further divided into; identity/custody/relationships administration (admission/referral details, plan, access rights, etc.)‏ past medical history, social history (life style/occupation/social status, e.g. level of poverty), stage of care (acute, chronic, palliative, end-of-life); population parameters (age, gender, culture, cohort, disabilities, immunities/vaccinations biological idiosyncrasies [e.g. allergies,, mutations etc]); test results (lab med, imaging, physical exam, vital signs, biomarkers, cognitive, social) active problems/diagnoses ; medications/treatments , proscribed (guideline/pathway/label appropriate)‏ non-proscribed/experimental primary, secondary; assistive/palliative ; alternative/complementary

26. Many ways of implementing PHRs and it is not possible to generalize functionality. But there are a subset of platform independent ways of evaluating function in terms of : 1) information, system, and service quality (consistency, relevance, completeness, timeliness, accessibility); 2) information accuracy, usability, and applicability 3) user satisfaction/experience; 4) impact at individual and community level Specifications

27. CT scan for Cancer Brain Tumour

28. Geography of a Smear of Blood Infected with Malaria Digital Image of Malaria Infected Blood

30. Database for screening effectiveness of Malaria Vaccine

31. Web 3.0 My Content Screening

33. Consumer / Patient Biomedical Researchers Science 2.0 Peer-review 2.0 Personal Health Record 2.0 Virtual Communities (peer-to-peer)‏ Professional Communities (peer-to-peer)‏ Health 2.0 HealthVault Google Health HealthBook Sermo WebCite CiteULike MDPIXX WiserWiki eDoctr BioWizard Dissect Medicine E-learning PLoS One BMC JMIR Wikis Blogs RSS RDF, Semantic Web Virtual Worlds Web 2.0 Technologies & Approaches Apomediation Participation Social Networking Collaboration XML AJAX Openess Revolution Health PatientsLikeMe PeerClip Connotea ALIVE HealthMap caBIG Health Professionals Medicine 2.0 (“next generation medicine”) Gunther Eysenbach. Medicine 2.0. J Med Internet Res 2008 (in press) http://dx.doi.org/ 10.2196/jmir.1030 DOI:10.2196/jmir.1030 The Future

35. Three articulated dimensions of information significance (work structures)‏ Collaborative (subject)‏ Client Tacit (community )‏ Cognitive (objectives) )‏ (rules)‏ Explicit Server (instruments)‏ Client Server Collaborative Cognitive

36. PHRs as Anchors for Communities of Practice that Create a Web of Relationships Leading to Knowing in Actions From: Ash and Roberts, (2008) Knowing in Action: Beyond communities of practice, Health Policy 37:353-369

37. Dimension PRECEDENCE VALIDITY MATURITY (guidance/topic) (perspectives/context) (options/task)‏ Domains Authenticity Source Warrant Dialogical Validity Collaborative Maturity ( Taylor)‏ Credibility Credentials/Expertise Quality Impact/Trustworthy (OGrady ) Relevance Perceived Usefulness Perceived Usability Perceived Applicability ( Pennefather & Jones ) (Germane) (Material) (Actionability‏)‏ Source Shutz Topical Interpretational Motivational Wenger What is it about? How it functions? How can it be used? Spender Meaning Data Practice Maron Subjective About Objective About Retrieval About Thomas Ontological Epistemological Methodological Amin & Roberts Professional Epistemic/Creative Craft/Task based Dimensions and Domains of Information Sense analogies with other knowledge dimension models