Associate Professor Department of Health Policy, Management and Evaluation, University of Toronto; Senior Scientist , Centre for Global eHealth Innovation, Division of Medical Decision Making and Health Care Research; Toronto General Research Institute of the UHN, Toronto General Hospital, Canada Visiting Professor, Faculty of Behavioral Sciences University of Twente, NL Gunther Eysenbach MD MPH Gunther Eysenbach MD MPH Consumer Health Informatics Consumer Health Informatics

Talk Outline Definition & Scope of Consumer Health Informatics Infodemiology: Demand and Supply of Health Information, syndromic surveillance Quality / Credibility of Health Information on the Web How Do Consumers Assess Health Information? Patient accessible health records, PHR Web 2.0

Definition & Scope of Consumer Health Informatics

Infodemiology: Demand and Supply of Health Information, syndromic surveillance

Quality / Credibility of Health Information on the Web

How Do Consumers Assess Health Information?

Patient accessible health records, PHR

Web 2.0

Eysenbach G: Consumer health informatics. BMJ 2000;320:1713-16

What is consumer health informatics? “ Consumer health informatics is the branch of medical informatics that analyses consumers' needs for information; studies and implements methods of making information accessible to consumers; and models and integrates consumers' preferences into medical information systems.” Eysenbach G: Consumer health informatics. BMJ 2000;320:1713-16

“ Consumer health informatics is the branch of medical informatics that analyses consumers' needs for information; studies and implements methods of making information accessible to consumers; and models and integrates consumers' preferences into medical information systems.”

Other definitions of CHI “ the use of modern computers and telecommunications to support consumers in obtaining information, analyzing their unique health care needs and helping them make decisions about their own health” (US General Accounting Office) http://www.webcitation.org/5M5JwNilG

“ the use of modern computers and telecommunications to support consumers in obtaining information, analyzing their unique health care needs and helping them make decisions about their own health” (US General Accounting Office)

Other definitions of CHI “ the study, development, and implementation of computer and telecommunications applications and interfaces designed to be used by health consumers” (Tom Ferguson, 2001)

“ the study, development, and implementation of computer and telecommunications applications and interfaces designed to be used by health consumers” (Tom Ferguson, 2001)

A distinct subfield of medical informatics? “ Because of its frequent patient-centered approach consumer-health informatics may have an even stronger overlap with public health The design of consumer health informatics applications require more frequent input from patients and consumers” (Tom Houston, 2001)

“ Because of its frequent patient-centered approach consumer-health informatics may have an even stronger overlap with public health

The design of consumer health informatics applications require more frequent input from patients and consumers” (Tom Houston, 2001)

Public Health Informatics Public health informatics is the science and practice of transmitting, collecting, and using the right information in the right form to help make the right decisions for the Nation's public health." Dr. Edward Sondik Acting Director, National Center for Public Health Informatics (NCPHI) Centers for Disease Control and Prevention

Public health informatics is the science and practice of transmitting, collecting, and using the right information in the right form to help make the right decisions for the Nation's public health."

Dr. Edward Sondik Acting Director, National Center for Public Health Informatics (NCPHI) Centers for Disease Control and Prevention

First textbook on Consumer Health Informatics Covers: Patient empowerment; Frameworks and models for health behavior change and patient education; Patient to patient communication; Patient to provider communication; Privacy and confidentiality; Ethical issues; Evaluation methods Lewis, Eysenbach, Kukafka, Stavri, Jimison. Consumer Health Informatics Springer, 2005

Covers:

Patient empowerment;

Frameworks and models for health behavior change and patient education;

Patient to patient communication;

Patient to provider communication;

Privacy and confidentiality;

Ethical issues;

Evaluation methods

“ Consumers” All persons, sick or well, who seek information and take action in accord with personal preferences, life situations, and individual health goals Broader than “patient” (includes the well, includes agents such as caregivers) Very diverse group Brennan & Safran. Chapter 2 Empowered Consumers. In: Lewis, Eysenbach, Kukafka, Stavri, Jimison. Consumer Health Informatics Springer, 2005

All persons, sick or well, who seek information and take action in accord with personal preferences, life situations, and individual health goals

Broader than “patient” (includes the well, includes agents such as caregivers)

Very diverse group

Empowered consumers Empowerment: granting of power to a dependent group or enhancing an individual’s ability for self-determination “ a social process of recognizing, promoting and enhancing people’ abilities to meet their own needs, to solve their own problems, and mobilize the necessary resources in order to feel in control of their lives” (Gibson, 1991) CHI applications support the ideology of empowered consumers (a power balance in the patient-health professional relationship) e.g. by Informing about health concerns Assisting in finding others with similar concerns Assisting in navigating the health care system Access to clinical records and personal care management tools Brennan & Safran. Chapter 2 Empowered Consumers. In: Lewis, Eysenbach, Kukafka, Stavri, Jimison. Consumer Health Informatics Springer, 2005

Empowerment: granting of power to a dependent group or enhancing an individual’s ability for self-determination

“ a social process of recognizing, promoting and enhancing people’ abilities to meet their own needs, to solve their own problems, and mobilize the necessary resources in order to feel in control of their lives” (Gibson, 1991)

CHI applications support the ideology of empowered consumers (a power balance in the patient-health professional relationship) e.g. by

Informing about health concerns

Assisting in finding others with similar concerns

Assisting in navigating the health care system

Access to clinical records and personal care management tools

Empowered consumers (2) Ideological / philosophical shift in many Western countries partly facilitated through information technology, viewing... lay people / patients not only passive recipients of health care but also active initiators of positive health behavior, organizers and managers of home-based care, and citizens engaged in community-based activities for health promotion and prevention Brennan & Safran. Chapter 2 Empowered Consumers. In: Lewis, Eysenbach, Kukafka, Stavri, Jimison. Consumer Health Informatics Springer, 2005

Ideological / philosophical shift in many Western countries partly facilitated through information technology, viewing...

lay people / patients not only passive recipients of health care

but also active initiators of positive health behavior, organizers and managers of home-based care, and citizens engaged in community-based activities for health promotion and prevention

Empowerment (political science view) Key dimensions (Melville, 1997): Information (e.g. about health concerns) Access (e.g. to resources) Choice (e.g. of resources) Representation (in decisions about structure and deployment of resources) Redress of grievances (mechanisms to address concerns how resources are used) CHI/Internet is one facilitator for empowerment, but other dimensions need to be addressed too Information is a necessary , but not sufficient prerequisite for empowerment

Key dimensions (Melville, 1997):

Information (e.g. about health concerns)

Access (e.g. to resources)

Choice (e.g. of resources)

Representation (in decisions about structure and deployment of resources)

Redress of grievances (mechanisms to address concerns how resources are used)

CHI/Internet is one facilitator for empowerment, but other dimensions need to be addressed too

Information is a necessary , but not sufficient prerequisite for empowerment

Consumerism Consumerism is conceptually related to empowerment of consumers in that it advocates consumer empowerment through right to information and participation Social movement emerged in the 60ies “ a movement advocating greater protection of the interests of consumers“ (wordreference.com) “ The movement seeking to protect and inform consumers by requiring such practices as honest packaging and advertising, product guarantees, and improved safety standards. “ (answers.com) “ the promotion of the consumer's interests” (Merriam-Webster) “ the protection of the rights and interests of consumers, especially with regard to price, quality, and safety” (MSN/Encarta)

Consumerism is conceptually related to empowerment of consumers in that it advocates consumer empowerment through right to information and participation

Social movement emerged in the 60ies

“ a movement advocating greater protection of the interests of consumers“ (wordreference.com)

“ The movement seeking to protect and inform consumers by requiring such practices as honest packaging and advertising, product guarantees, and improved safety standards. “ (answers.com)

“ the promotion of the consumer's interests” (Merriam-Webster)

“ the protection of the rights and interests of consumers, especially with regard to price, quality, and safety” (MSN/Encarta)

Disintermediation Cutting out the middle-man Internet changing the role of the middle-man in many industries, i.e. Computer hardware and software Travel agencies Bookstores and music stores (…) Health care?

Cutting out the middle-man

Internet changing the role of the middle-man in many industries, i.e.

Computer hardware and software

Travel agencies

Bookstores and music stores

(…)

Health care?

Patient data External evidence General health information Personal health information Literature Mass Media Internet Health Record relevant Information Patient Patient accessible electronic health records Medical knowledge Disintermediation Physician (health professionals, librarians) as infomediary Eysenbach G, Jadad AR. Consumer health informatics in the internet age. <URL: http://www.jmir.org/2001/2/e19/>

What is consumer health informatics? “ Consumer health informatics is the branch of medical informatics that analyses consumers' needs for information; studies and implements methods of making information accessible to consumers; and models and integrates consumers' preferences into medical information systems.” Eysenbach G: Consumer health informatics. BMJ 2000;320:1713-16

“ Consumer health informatics is the branch of medical informatics that analyses consumers' needs for information; studies and implements methods of making information accessible to consumers; and models and integrates consumers' preferences into medical information systems.”

The demand side: Health seekers on the Internet In the US, 55% (52 million) of those with Internet access have used the Web to get health or medical information. Source: Pew Internet & American Life Project health seekers survey, August, 2000

The demand side: Health seekers on the Internet

In the US, 55% (52 million) of those with Internet access have used the Web to get health or medical information.

Canada Internet Access Statistics Source: Statistics Canada

Ministry of Health, Australia, http://www.health.gov.au/healthconnect/pdf_docs/ehr_pta.pdf

What is the prevalence of health-related searches on the web? Eysenbach G, Köhler C. What is the Prevalence of Health-related Searches on the World Wide Web? Qualitative and Quantitative Analysis of Search Engine Queries on the Internet. Proc AMIA Annu Fall Symp ; 2003: 225-229 Eysenbach G, Köhler C. Health-Related Searches on the Internet JAMA , Jun 2004; 291: 2946.

How many searches on the web? In March 2004, Google reported 200 Million searches per day on all regional partner sites combined Google has a search engine usage share of 54% => 370 Million Internet searches are being conducted globally every day How many are “health-related?” Eysenbach G, Köhler C. Health-Related Searches on the Internet JAMA 2004; 291:2946 Eysenbach G, Köhler C. What is the Prevalence of Health-related Searches on the World Wide Web? Qualitative and Quantitative Analysis of Search Engine Queries on the Internet. Proc AMIA Annu Fall Symp ; 2003: 225-229

In March 2004, Google reported 200 Million searches per day on all regional partner sites combined

Google has a search engine usage share of 54%

=> 370 Million Internet searches are being conducted globally every day

How many are “health-related?”

“ Screenscraping” script Database

An automatic scoring method (“Google score”) to determine the “health-relatedness” of a query Eysenbach G, Köhler C. What is the Prevalence of Health-related Searches on the World Wide Web? Qualitative and Quantitative Analysis of Search Engine Queries on the Internet. Proc AMIA Annu Fall Symp ; 2003: 225-229 For example, the word house (entered as “+house” into Google) is found 186 Million times in Google, if combined with the word health (“+house +health”) we find 40.7 Million hits; the resulting Google score is 40.7/186=21%. The word hospital is found 54.5 Million times on Google, if combined with health we find 28.3 Million hits; the resulting Google score is 28.3/54.5=51.9%.

Demand for Online Health Information In March 2004, Google reported 200 Million searches per day on all regional partner sites combined Google has a search engine usage share of 54% => 370 Million Internet searches are being conducted globally every day Our research (manual analysis of 3.000 search engine queries) shows that 4.5% of all queries are health-related => we estimate that each day 16.7 million health related searches are conducted Eysenbach G, Köhler C. Health-Related Searches on the Internet JAMA 2004; 291:2946 Eysenbach G, Köhler C. What is the Prevalence of Health-related Searches on the World Wide Web? Qualitative and Quantitative Analysis of Search Engine Queries on the Internet. Proc AMIA Annu Fall Symp ; 2003: 225-229

In March 2004, Google reported 200 Million searches per day on all regional partner sites combined

Google has a search engine usage share of 54%

=> 370 Million Internet searches are being conducted globally every day

Our research (manual analysis of 3.000 search engine queries) shows that

4.5% of all queries are health-related

=> we estimate that each day 16.7 million health related searches are conducted

Breakdown of health-related search engine queries by category Eysenbach G, Köhler C. Health-Related Searches on the Internet JAMA 2004; 291:2946

Text mining of health-related searches Continuous text mining of consumer searches Longitudinal analysis: Use for public health surveillance? “ Health information needs” assessment?

Continuous text mining of consumer searches

Longitudinal analysis:

Use for public health surveillance?

“ Health information needs” assessment?

Methods Objective: Proof of concept, showing relationship between information demand and public health events + potential use for surveillance Correlation of search data with traditional flu surveillance data Data source for searches Search engines do not share data Previously described “screenscraping” method (Proc AMIA 2003: 225-229 ) does not allow geographic targeting “ Trick” to obtain search statistics from Google: Buy a keyword-triggered ad on Google Adsense 2004/2005 flu season in Canada

Objective: Proof of concept, showing relationship between information demand and public health events + potential use for surveillance

Correlation of search data with traditional flu surveillance data

Data source for searches

Search engines do not share data

Previously described “screenscraping” method (Proc AMIA 2003: 225-229 ) does not allow geographic targeting

“ Trick” to obtain search statistics from Google: Buy a keyword-triggered ad on Google Adsense

2004/2005 flu season in Canada

Daily searches on Google.ca for “flu” or “flu symptoms”

Infodemiology: Tracking demand for health information for syndromic surveillance

“ Infodemiology” the epidemiology of information Describing and analyzing determinants and distribution of health information & communication and its impact on populations The science of distribution and determinants of disease in populations Epidemiology Public Health Professionals Policy Makers Policy Decisions Population Health Status The notion of “infodemiology” (measuring demand and supply of health information and drawing conclusions for public health) G. Eysenbach. Infodemiology. American Journal of Medicine , 2002;113(0):763-765 Publicly available Information/ICT

“ Infodemiology” the epidemiology of information Describing and analyzing health information & communication and its impact on populations Demand Metrics Supply Metrics Gunther Eysenbach Infodemiology: the epidemiology of (mis)information American Journal of Medicine , 2002;113(0):763-765

Population Health Technology Population health technology is a recent umbrella term subsuming applications of technologies such as the Internet, wireless devices, mobile phones, smart appliances, or smart homes (domotics) that have a population focus and the potential to improve public health. In principle, all sorts of home-monitoring devices, from digital fever thermometers to asthma-monitoring devices, could be modified to function as early detection systems , ie, to transmit data to central data-mining facilities, which may detect emerging patterns indicating disease outbreaks. Eysenbach G SARS and Population Health Technology J Med Internet Res 2003;5(2):e14 <URL: http://www.jmir.org/2003/2/e14/>

Population health technology is a recent umbrella term subsuming applications of technologies such as the Internet, wireless devices, mobile phones, smart appliances, or smart homes (domotics) that have a population focus and the potential to improve public health.

In principle, all sorts of home-monitoring devices, from digital fever thermometers to asthma-monitoring devices, could be modified to function as early detection systems , ie, to transmit data to central data-mining facilities, which may detect emerging patterns indicating disease outbreaks.

“ Infodemiology” the epidemiology of information Describing and analyzing health information & communication and its impact on populations Demand Metrics Supply Metrics Gunther Eysenbach Infodemiology: the epidemiology of (mis)information American Journal of Medicine , 2002;113(0):763-765

Global Public Health Intelligence Network (GPHIN) GPHIN monitors global media sources (such as news wires and web sites ), then gathers and disseminates relevant information on such topics as disease outbreaks, infectious diseases, contaminated food and water, bio-terrorism and exposure to chemical and radio-nuclear agents, and natural disasters. It also monitors issues related to the safety of products, drugs and medical devices.

One motivation: Metrics for Achievement of Public Health Policy Objectives http://www.healthypeople.gov

S. Lawrence and C. L. Giles. Accessibility of information on the web Nature 400 (6740):107-109, 1999. 83% commercial remaining classifications: health ranks second 90,000 health servers 24 million pages (2/99)

83% commercial

remaining classifications: health ranks second

90,000 health servers

24 million pages

(2/99)

What is consumer health informatics? “ Consumer health informatics is the branch of medical informatics that analyses consumers' needs for information; studies and implements methods of making information accessible to consumers; and models and integrates consumers' preferences into medical information systems.” Eysenbach G: Consumer health informatics. BMJ 2000;320:1713-16

“ Consumer health informatics is the branch of medical informatics that analyses consumers' needs for information; studies and implements methods of making information accessible to consumers; and models and integrates consumers' preferences into medical information systems.”

Quality of Health Information on the Web

&quot;Be careful about reading health books. You may die of a misprint.&quot; ~ Mark Twain

Eysenbach G, Powell J, Kuss O, Sa ER. Empirical studies assessing the quality of health information for consumers on the World Wide Web: A systematic review. JAMA 2002; 287: 2691-2700 Meta-analysis of information quality on the web

100% 0% Inaccurate / non-evidence based information on the web Systematic review of studies evaluating health information on the web (Eysenbach et al., 2002. JAMA 2002; 287: 2691-2700 ) n=1781 websites 27 studies

100% 0% Inaccurate / non-evidence based information on the web n=1781 websites 27 studies Cancer ~5% inaccurate Systematic review of studies evaluating health information on the web (Eysenbach et al., 2002. JAMA 2002; 287: 2691-2700 )

100% 0% Inaccurate / non-evidence based information on the web n=1781 websites 27 studies Nutrition ~45% inaccurate Diet ~89% inaccurate Systematic review of studies evaluating health information on the web (Eysenbach et al., 2002. JAMA 2002; 287: 2691-2700 )

„ Technical“ (disclosure / transparency) consensus quality criteria for health websites JAMA 2002; 287: 2691-2700

BMJ Theme Issue „Quality of health information“ 9 March 2002 (Volume 324, Issue 7337)

Focus Groups How do you search for information? Which markers for quality / credibility do you use? Usability lab: Giving health questions to consumers Let participants search the web and try to come up with an answer from the web Sessions logged, videotaped In-depth interviews: post-interview with consumer qualitative analyis Eysenbach G, Köhler C. BMJ 2002; 324: 573-577 How do consumers search for and appraise health information on the World-Wide-Web? Qualitative study using focus groups, usability tests and in-depth interviews

Focus Groups

How do you search for information?

Which markers for quality / credibility do you use?

Usability lab:

Giving health questions to consumers

Let participants search the web and try to come up with an answer from the web

Sessions logged, videotaped

In-depth interviews:

post-interview with consumer

qualitative analyis

Authority of source Layout and appearance Advertising Readability Outbound links Picture of the site owner Email Credentials and qualifications Updating of content Quality seal and third party endorsements Credibility criteria applied by consumers Eysenbach G, Köhler C. BMJ 2002; 324: 573-577

Authority of source

Layout and appearance

Advertising

Readability

Outbound links

Picture of the site owner

Email

Credentials and qualifications

Updating of content

Quality seal and third party endorsements

Mock-up websites presented to consumers with different pictures

Is a health website CREDIBLE? C urrent and frequently updated R eferences cited E xplicit purpose and intentions of the site D isclosure of developers and sponsors I nterests disclosed and not influencing objectivity (e.g. financial interests) B alanced content, list advantages and disadvantages L evel of E vidence-level indicated Eysenbach G. Infodemiology: The epidemiology of (mis)information. Am J Med 2002;113(0):763-765

C urrent and frequently updated

R eferences cited

E xplicit purpose and intentions of the site

D isclosure of developers and sponsors

I nterests disclosed and not influencing objectivity (e.g. financial interests)

B alanced content, list advantages and disadvantages

L evel of E vidence-level indicated

Your question (yes/no statement which you want to check): Your hypothesized answer – ( ) yes ( ) no ( ) other: Find answers: Identify answers on 3 websites and write down the URL, source, and answer (Worksheet column 1) NO – revise keywords YES NO – revise question Check credibility: Check CREDIBLE criteria for the 3 websites / sources (Worksheet column 2) Check trustworthiness: Enter the 3 sources in Google and check their reputation, i.e. see what others are saying about them (Worksheet column 3) The Internet FACCCCT checking algorithm (Find Answers and Compare – Check Credibility – Check Trustworthiness) An algorithm for consumers to check facts on the web Eysenbach & Thomson (Medinfo, 2007) YES YES YES NO NO Eliminate sources with negative reputation Eliminate sources with CREDIBLE score <=2 NO YES Step 1 Step 2 Step 3 Final answer – ( ) yes ( ) no ( ) other: Your Google keywords: Found relevant websites? Is the question “answerable”? Compare the answers: Are the three answers the same? Select the sites with the highest scores – are the answers the same? Select the remaining sites – are the answers the same?

URL: http://................................................................... Quote about source A: ………………………………... Deems A not reputable (-1) / neutral (0) / reputable (+1) Answer A URL: http://.................................................................... Source A: ……………………………………………………. Author A:… ……………………………………. Organization A:…………………………………...…………. Quote: ……………………………………………………...... ……………………………………………………… .. Compare answers - bottom line: ( ) no consensus ( ) consensus answer: …………………. Current : n (-1) ( 0) y (+1) References : n (-1) ( 0) y (+1) Explicit purpose : n (-1) ( 0) y (+1) Disclosure : n (-1) ( 0) y (+1) Interest conflict :n (-1) ( 0) y (+1) Balanced : n (-1) ( 0) y (+1) LEvel of evidence* : e (-1) ( 0) t (+1) CREDIBLE score:………………. Step 2: check how CREDIBLE the documents are Step 1: Enter search terms reflecting the question into Google. Find answers on multiple sites and compare results. Eliminate sites with score 2 or less, compare answers on remaining sites: ( ) no consensus ( ) consensus answer: …………………. Step 3: check the source trustworthiness (reputation) Enter source/author/organization in Google Document A Document B Document C URL: http://................................................................... Quote about author A: ………………………………... Deems A not reputable (-1) / neutral (0) / reputable (+1) URL: http://................................................................... Quote about organization A: ………………………………... Deems A not reputable (-1) / neutral (0) / reputable (+1) Reputation Score: URL: http://................................................................... Quote about source B: ………………………………... Deems B not reputable (-1) / neutral (0) / reputable (+1) URL: http://................................................................... Quote about author B: ………………………………... Deems B not reputable (-1) / neutral (0) / reputable (+1) URL: http://................................................................... Quote about organization B: ………………………………... Deems B not reputable (-1) / neutral (0) / reputable (+1) Reputation Score: URL: http://................................................................... Quote about source C: ………………………………... Deems C not reputable (-1) / neutral (0) / reputable (+1) URL: http://................................................................... Quote about author C: ………………………………... Deems C not reputable (-1) / neutral (0) / reputable (+1) URL: http://................................................................... Quote about organization C: ………………………………... Deems C not reputable (-1) / neutral (0) / reputable (+1) Reputation Score: Eliminate sites with negative reputation, compare answers on remaining sites: ( ) no consensus -> repeat search or add hits ( ) consensus answer: …………………. Answer B URL: http://.................................................................... Source B: ……………………………………………………. Author B:… ……………………………………. Organization B:…………………………………...…………. Quote: ……………………………………………………...... ……………………………………………………… .. Answer C URL: http://.................................................................... Source B: ……………………………………………………. Author B:… ……………………………………. Organization B:…………………………………...…………. Quote: ……………………………………………………...... ……………………………………………………… .. *[e=experiential, t=trials] Current : n (-1) ( 0) y (+1) References : n (-1) ( 0) y (+1) Explicit purpose : n (-1) ( 0) y (+1) Disclosure : n (-1) ( 0) y (+1) Interest conflict :n (-1) ( 0) y (+1) Balanced : n (-1) ( 0) y (+1) LEvel of evidence* : e (-1) ( 0) t (+1) CREDIBLE score:………………. *[e=experiential, t=trials] Current : n (-1) ( 0) y (+1) References : n (-1) ( 0) y (+1) Explicit purpose : n (-1) ( 0) y (+1) Disclosure : n (-1) ( 0) y (+1) Interest conflict :n (-1) ( 0) y (+1) Balanced : n (-1) ( 0) y (+1) LEvel of evidence* : e (-1) ( 0) t (+1) CREDIBLE score:………………. *[e=experiential, t=trials]

What is consumer health informatics? “ Consumer health informatics is the branch of medical informatics that analyses consumers' needs for information; studies and implements methods of making information accessible to consumers; and models and integrates consumers' preferences into medical information systems .” Eysenbach G: Consumer health informatics. BMJ 2000;320:1713-16

“ Consumer health informatics is the branch of medical informatics that analyses consumers' needs for information; studies and implements methods of making information accessible to consumers; and models and integrates consumers' preferences into medical information systems .”

Where clinical IS and consumer health informatics meet Patient Portals: Patient interface to clinical information systems Personal Health Record: “(an Internet-based) set of tools that allows people to access and coordinate their life-long health information and make appropriate parts of it available to those who need it.”* *Markle Foundation: Personal Health WG Final Report http://www.webcitation.org/5M5CP3Q3C

Patient Portals: Patient interface to clinical information systems

Personal Health Record: “(an Internet-based) set of tools that allows people to access and coordinate their life-long health information and make appropriate parts of it available to those who need it.”*

Chiu, Eysenbach et al. (submitted)

What can we learn from studies? patients desire access to their medical record (preferably unedited) physicians are wary Level of enthusiasm “flips” after introduction Positive effect on adherence, none on health outcomes and resource utilization patients prioritize information in clinical notes and test results over general disease information discrepancy between what patients desire and benefit from and what physicians believe patients desire and benefit from J Med Internet Res 2004;6(2):e12 http://www.jmir.org/2004/2/e12/

patients desire access to their medical record (preferably unedited)

physicians are wary

Level of enthusiasm “flips” after introduction

Positive effect on adherence, none on health outcomes and resource utilization

patients prioritize information in clinical notes and test results over general disease information

discrepancy between what patients desire and benefit from and what physicians believe patients desire and benefit from

Research Issues Patient Portals How much information? Which information? When? What “outcomes” should we measure to justify adoption? (patient satisfaction, trust?) Effect on health outcomes, resource utilization?

How much information? Which information? When?

What “outcomes” should we measure to justify adoption? (patient satisfaction, trust?)

Effect on health outcomes, resource utilization?

The future

The Future: Trends Ubiquitous, pervasive, ambient computing Powerful handheld devices Applications with geospatial awareness

Ubiquitous, pervasive, ambient computing

Powerful handheld devices

Applications with geospatial awareness

Portable Patient Health Record PR-ICE™

Writing in the July 28, 2005 edition of the New England Journal of Medicine, John Halamka, M.D., chief information officer at BIDMC and Harvard Medical School and an emergency room physician, says the chip implanted in his arm would allow anyone with a handheld reader to scan his arm and obtain his 16-digit medical identifier. Any authorized health care worker can visit a secure Web site hosted by the chip manufacturer and retrieve information about his identity and that of his primary care physician, who could provide medical history details. Implantable Chips

http://en.wikipedia.org/wiki/Image:Web20_en.png

Source: http://web2.wsj2.com/

www.medicine20congress.com , Toronto, Sept 4-5 th , 2008

Medicine 2.0 (“next generation medicine”) Full paper will appear as: 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 Consumer / Patient Health Professionals 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

EMR “ Tethered” PHR/ PAEHR “ stand-alone” PHR PHR EMR Read only Read+Write/Annotate PHR PHR © Gunther Eysenbach, CC-BY

EMR EMR PHR Different providers “ interconnected” PHR © Gunther Eysenbach, CC-BY PHR PHR

Records at Financial institutions Personal Finance Records © Gunther Eysenbach, CC-BY

Tang et al, JAMIA 2006

EMR EMR PHR Different providers Health Information is tightly protected © Gunther Eysenbach, CC-BY PHR PHR

What these models neglect: People want to SHARE some of their personal information Meier A, Lyons EJ, Frydman G, Forlenza M, Rimer BK How Cancer Survivors Provide Support on Cancer-Related Internet Mailing Lists J Med Internet Res 2007;9(2):e12 <URL: http://www.jmir.org/2007/2/e12/>

Another example for sharing personal health information

EMR EMR PHR PHR PHR Different providers PHR 2.0 © Gunther Eysenbach, CC-BY Community Other peoples’ PHR Other peoples’ PHR Other peoples’ PHR

What does this all mean for health care / eHealth (1) ? “ [People from the] Google Generation are impatient and have zero tolerance for delay, information and entertainment needs must be fulfilled immediately ( e.g. Johnson, 2006: Shih and Allen 2006)” Information Behaviour of the Researcher of the Future – The Literature on Young People and Their Information Behavior URL:http://www.ucl.ac.uk/slais/research/ciber/downloads/GG%20Work%20Package%20II.pdf. Accessed: 2008-04-09. (Archived by WebCite ® at http://www.webcitation.org/5WxqwuH4g)

What does this all mean for health care / eHealth (1) ? Consumer Expectations ! Web 2.0 savvy consumers will push the envelope Just providing a institutions-specific “portal” (or tethered PHR) will not be enough Current developments will help to engage patients, but the next generation will quickly demand to be able to do more with their data Patients 2.0 will demand full control over their data (as a minimum, XML export!)

Consumer Expectations !

Web 2.0 savvy consumers will push the envelope

Just providing a institutions-specific “portal” (or tethered PHR) will not be enough

Current developments will help to engage patients, but the next generation will quickly demand to be able to do more with their data

Patients 2.0 will demand full control over their data (as a minimum, XML export!)

What does this all mean for health care / eHealth (2) ? Long Tail Even patients with rare diseases generate enough critical mass to create patient networks Importance of Users / Consumers Encourage participation – users add value Trust your users as co-developers Personal health information entered by users is trustworthy! Facilitate network effects Cooperate, don’t control Towards decentralized quality control Peers and Web 2.0 tools (recommender systems, collaborative filtering etc.) will play a powerful role in filtering quality information (decentralized model of quality control) APOMEDIARIES instead of INTERMEDIARIES

Long Tail

Even patients with rare diseases generate enough critical mass to create patient networks

Importance of Users / Consumers

Encourage participation – users add value

Trust your users as co-developers

Personal health information entered by users is trustworthy!

Facilitate network effects

Cooperate, don’t control

Towards decentralized quality control

Peers and Web 2.0 tools (recommender systems, collaborative filtering etc.) will play a powerful role in filtering quality information (decentralized model of quality control) APOMEDIARIES instead of INTERMEDIARIES

Patient data External evidence General health information Personal health information Literature Mass Media Internet Health Record Relevant +credible Information Patient Patient accessible electronic health records Medical knowledge Disintermediation / Apomediation Physician (health professionals, librarians) as intermediary Irrelevant inaccurate Irrelevant Information “ Apomediaries”

Apomediation defined “ disintermediation” through digital technologies = bypassing the gatekeeper, role of “human” intermediaries diminishes or changes consumers and patients are finding new ways to locate relevant and credible information. The agents that replace intermediaries in the digital media context may be called “ apomediaries ,” Intermediaries mediate by standing “in between” ( inter- ) consumers and the services or information they seek, Apomediaries “stand by” ( apo- ) and provide added value from the outside, steering consumers to relevant and high-quality information without being a requirement to obtain the information or service (Eysenbach, 2007). While the traditional intermediary is the “expert,” apomediaries consist of a broader community including experts, parents, teachers, peers, and the like, who are networked in a digital environment, or networked tools (“Web 2.0”). Eysenbach, http://hdl.handle.net/1807/9906

“ disintermediation” through digital technologies = bypassing the gatekeeper, role of “human” intermediaries diminishes or changes

consumers and patients are finding new ways to locate relevant and credible information.

The agents that replace intermediaries in the digital media context may be called “ apomediaries ,”

Intermediaries mediate by standing “in between” ( inter- ) consumers and the services or information they seek,

Apomediaries “stand by” ( apo- ) and provide added value from the outside, steering consumers to relevant and high-quality information without being a requirement to obtain the information or service (Eysenbach, 2007).

While the traditional intermediary is the “expert,” apomediaries consist of a broader community including experts, parents, teachers, peers, and the like, who are networked in a digital environment, or networked tools (“Web 2.0”).

Knowledge Self-efficacy Autonomy Empowerment - decreased reliance on experts Apomediation replacing the intermediary Success Failure Intermediary reliance on authorities/ experts Gunther Eysenbach. Credibility of Health Information and Digital Media: New Perspectives and Implications for Youth. In: Miriam J. Metzger & Andrew J. Flanagin (eds.). Digital Media, Youth, and Credibility. MacArthur Foundation Series on Digital Media and Learning. MIT Press 2007 www.mitpressjournals.org/doi/pdf/10.1162/dmal.9780262562324.123 Dynamic Intermediation/Disintermediation/Apomediation (DIDA) Model (Eysenbach, 2007)

Take two in the morning and don’t ask questions Holy land of the knowing Hole of ignorance physician patient Eysenbach G, Jadad AR. Consumer health informatics in the internet age. <URL: http://www.jmir.org/2001/2/e19/> No trespassing

Let me educate* you *(ex ducere = to lead out) Hole of ignorance physician patient No trespassing without professional guidance Holy land of the knowing Eysenbach G, Jadad AR. Consumer health informatics in the internet age. <URL: http://www.jmir.org/2001/2/e19/>

WWW email Self-support physician patient Eysenbach G, Jadad AR. Consumer health informatics in the internet age. <URL: http://www.jmir.org/2001/2/e19/> No trespassing without professional guidance

Welcome! Watch your step Consumer Health Informatics physician patient Eysenbach G, Jadad AR. Consumer health informatics in the internet age. <URL: http://www.jmir.org/2001/2/e19/>

- Tailored Patient Education - Online Health Risk Assessments - Online Support Groups Discussion Forums Social Networks Health Care Providers ( Networked ) Distributed, interoperable EHR - Secure Email teleadvice Triage VideoConference Access to own EHR/PHR Annotate entries - Symptom Diaries - Email follow-ups - Mobile Health reminders - Online Rx refills - Online Scheduling for Office Visits - Waiting list management Quality ratings eHealth Care 2.0 Web Search Provider Selection based on eRatings and preferences

- Online Support Groups

Discussion Forums

Social Networks

- Secure Email teleadvice

Triage

VideoConference

Access to own EHR/PHR

Annotate entries

- Symptom Diaries

Thank you! Research Assistants J. Warman, D. Davis, M.J. Suhonos, J.S. Dumais, F. Ahmed Co-investigators I3MPACT/eGUIDES/SUSHI-Q Harvey Skinner, Malcolm Koo, George Browman, Alex Jadad, Mary Gospodarovicz, Michael Jewett, John Trachtenberg, Pam Catton MedCERTAIN/MedCIRCLE contributors A.Bernardi, D.Brickley, P.Cross, S.Darmoni, M.Fiene, V.Knight, Ch.Köhler, K.Lampe, M.A.Mayer, N.Rogers, Th.Roth-Berghofer, S.Sänger, T.Thomeczek. C.Soler, G.Yihune Funding Change Foundation, Canadian Institutes for Health Research, NSERC, European Union Dr G. Eysenbach, Email: [email_address] or @gmail.com, Journal: www.jmir.org

Research Assistants

J. Warman, D. Davis, M.J. Suhonos, J.S. Dumais, F. Ahmed

Co-investigators I3MPACT/eGUIDES/SUSHI-Q

Harvey Skinner, Malcolm Koo, George Browman, Alex Jadad, Mary Gospodarovicz, Michael Jewett, John Trachtenberg, Pam Catton

MedCERTAIN/MedCIRCLE contributors

A.Bernardi, D.Brickley, P.Cross, S.Darmoni, M.Fiene, V.Knight, Ch.Köhler, K.Lampe, M.A.Mayer, N.Rogers, Th.Roth-Berghofer, S.Sänger, T.Thomeczek. C.Soler, G.Yihune

Funding

Change Foundation, Canadian Institutes for Health Research, NSERC, European Union