BioTIFF: An Articulated and Self-Documenting Electronic Personal Health Record [04 Cr2 1130 Pennefather]

Pennefather, P. et al.: BioTIFF: An Articulated and Self-Documenting Electronic Personal Health Record

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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

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

Laboratory for Collaborative Diagnostics

Design Constraints:

Systems: transparent composition and operations, technology agnostic

Components: interchangeable, inexpensive, accessible commodity products.

Data: annotated with respect to provenance and purpose, shareable and trusted.

Processes: flexible, scalable, extending beyond the instance, contextualized

Design Challenge: to create transparent, economical, adaptable, open, participatory, & minimally invasive personal diagnostic and health information processing platforms platforms that record and communicate case-centric biomedical information in a way that promotes shared understanding and collaborative articulation of knowledge Laboratory for Collaborative Diagnostics (LCD)‏ Look, Collaborate, Decide www.lcd.utoronto.ca

CIRCLE OF CARE

Personal Intercase Workstation (sub $200).

Decontented commodity mother board /CPU

USB hub connected to home communication and health monitoring devices

Live USB drive OS providing full suite of open source communication, productivity, instructional media and health data processing and management software.

Recyclable polymer housing for components, customized to owner and location

Disease Survivor Intercase OS/BioTIFF owner at center of circle of care HEALTH CARE SYSTEM BioTIFF. Multiple levels of data and meta data generated by diagnostic events are transformed into pages of an encrypted multi-page TIFF file that serves as a data container. Applications working with this bio-referenced data specification used to create a health narrative that can be managed, indexed, and searched through web-based storage and compute clouds (eg. Amazon)‏ Electronic Medical Record & PACS Quality, Safety, Value Assurance Scholarly, Fundamental, Applied, & Use-Inspired Research Educational, Art & Design, Media, & Infotainment SECONDARY USE THE INTERCASE PROJECT Distributed Processing of Diagnostic Information for the Circle of Care

Degradable polymer housing for components. Customized to owner and location

Disease Survivor Intercase OS/BioTiff owner at center of circle of care HEALTH CARE SYSTEM BioTIFF. Multiple levels of data and meta data generated by diagnostic events are transformed into an encrypted TIFF and aggregated in a multi-page TIFF referenced to bodily structure and function. Accessed, indexed, and searched through web-based storage and compute clouds (eg. Amazon)‏ Electronic Medical Record & PACS Quality, Safety, Value Assurance Scholarly, Fundamental, Applied, & Use-Inspired Research Educational, Art & Design, Media, & Infotainment SECONDARY USE CIRCLE OF CARE

BioTIFF Overview

What is TIFF?

TIFF (Tagged Image File Format), is Aldus-Adobe’s Public domain tag-based file format for storing and interchanging raster images.

TIFF is a rich format for pixel based raster image data from many sources

still and video cameras

monitor screens

scanning and rendering output from medical imaging

other medical diagnostic instrument

results of simulations and mapping.

other image file formats

Multi-Page TIFF File Structure

Uses offset pointers to link Image File Directories (IFDs) that identify and locate specific sets of image data and meta data (pages).

IFDs consist of lists of TIFF Tags and an offset pointer to the next IFD

Tags contain: 1) identity code 2) data type code 3) number of values associated with the tag and 4) offset to where the data is found

Each page has its own IFD and can be located anywhere in the file

TIFF has remained stable since 1992.

Standard TIFF uses 32 bit offsets giving a maximum size of 4G

The Big TIFF project will use 64bit offsets enabling one file to contain 16 ExaBytes (16 Million TeraBytes)

see : www.awaresystems.be/imaging/tiff/faq.html#q3

The GeoTIFF represents the efforts by over 160 different remote sensing, GIS, cartographic, and surveying related companies and organizations to establish TIFF file format based interchange format for geo-referenced raster imagery.( http://www.remotesensing.org/geotiff/geotiff.html )‏

GeoTIFF exploits the self-documenting properties of geographical coordinate systems to uniquely identify locations within a GIS image and allowing cross-referencing to other related information artefacts.

The BioTIFF seeks emulate the success of GeoTIFF by establishing a TIFF file format based interchange format for bio-referenced raster imagery. Like GeoTIFF It is an open source community based project

GeoTIFF and BioTIFF

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

BioTIFF is file specification designed to provide a:

container for related clinical and personal information needed to interpret each diagnostic event co-localizing meta-data with primary data

means for remotely accessioning, curating and reusing original data and interpretations, assuring their provenance and enabling distributed usage

means of asserting ownership over diagnostic information.

means regulating and monitoring access through encryption and tagging

means for tracking health care trajectories and creating personal narratives of the experience

communication bridge between data owner and care provider supporting dialogue concerning shared understanding of goals and experiences

beacon for secondary use applications and social networks

(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

Web 3.0: a Data Web supporting Distributed Cognition

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

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)‏

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)‏

CIRCLE OF CARE

Recyclable polymer housing for components, customized to owner and location

Disease Survivor Intercase OS/BioTIFF owner at center of circle of care HEALTH CARE SYSTEM BioTIFF. Multiple levels of data and meta data generated by diagnostic events are transformed into pages of an encrypted multi-page TIFF file that serves as a data container. Applications working with this bio-referenced data specification used to create a health narrative that can be managed, indexed, and searched through web-based storage and compute clouds (eg. Amazon)‏ Electronic Medical Record & PACS Quality, Safety, Value Assurance Scholarly, Fundamental, Applied, & Use-Inspired Research Educational, Art & Design, Media, & Infotainment SECONDARY USE THE INTERCASE PROJECT Distributed Processing of Diagnostic Information for the Circle of Care

Degradable polymer housing for components. Customized to owner and location

Disease Survivor Intercase OS/BioTiff owner at center of circle of care HEALTH CARE SYSTEM BioTIFF. Multiple levels of data and meta data generated by diagnostic events are transformed into an encrypted TIFF and aggregated in a multi-page TIFF referenced to bodily structure and function. Accessed, indexed, and searched through web-based storage and compute clouds (eg. Amazon)‏ Electronic Medical Record & PACS Quality, Safety, Value Assurance Scholarly, Fundamental, Applied, & Use-Inspired Research Educational, Art & Design, Media, & Infotainment SECONDARY USE CIRCLE OF CARE

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

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

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)‏

Health Care Meaning and PHRs

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 .

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

How is it used.

Documents objectives/goals/intentions of care (best practices)‏

Documents delivery of care (from the patients perspective in the case of the PHR)‏

Documents outcomes/experience/continuity of care

Provides a patient authorized channel for secondary use of personal health care information for:

Clinical research:

1) quantitative, 2) qualitative, 3) mixed, 4) biomedical, 5) epidemiological

Health care management

Health system planning and policy development

Governance, reporting, reimbursement

Fun and profit

Peer support/sharing

Reflective/interpretive/artistic

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

CT scan for Cancer Brain Tumour

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

Database for screening effectiveness of Malaria Vaccine

Web 3.0 My Content Screening

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

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

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

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

Canadian Pillars of Primary Health Care Reform www.primaryhealthcare.ca

Teams A team of health care providers works with you to improve care.

Information Information is co-ordinated between health care providers.

Access You have access to the right care at the right time.

Healthy Living A focus on prevention and self-care helps keep you well.

US Dimensions of Primary Health Care Reform http://www.iom.edu/CMS/8089.aspx

Informatics – supporting decision making using information technology,

Interdisciplinary Teams – facilitating collaboration that makes care more patient-centered, continuous, and reliable,

Evidence-Based Practice – integrating best research with clinical expertise and patient values

Patient-Centered Care – informing and involving patients and their families in health care decision making and self-management, and

Quality Improvement – providing intrinsic feedback aimed at continually understanding and measuring the quality of care in terms of need, structure, process, and outcomes

September 3, 2008 Map India 2003, New Delhi GeoTIFF Specific Additional Tags