The Indiana University Center for Law, Ethics, and Applied Research in Health Information (IU CLEAR) aims to enhance the ethical and lawful use of health information through collaboration with healthcare providers, patients, and other stakeholders. IU CLEAR seeks to develop a more rational approach to using personal health data from various digital sources for research while respecting patient privacy. The Health Information Map (HIMAP) project aims to map and understand the holistic view of health information generated from various sources on a daily basis to better facilitate treatment, research, and accountability.
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HIMAP Project Maps Health Data Flow
1. HIMAP
Health Information Map
IU CLEAR Project
Kristin Eilenberg, Project Leader
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@keilenberg #HIMAP #healthapps
2. School of Law
& Ethics
School of School of
Informatics Medicine
The Indiana University Center for Law, Ethics, and Applied
Research in Health Information’s purpose is:
• To enhance the ethical, lawful, and practical use of health information to
facilitate treatment and research, improve health outcomes for patient,
and facilitate accountability.
• To work with key constituencies including healthcare providers and
payers, patients, ethicists, attorneys, and professional groups, regulators,
and others to devise a more rational and more trustworthy approach to
using personal data for health research, one that recognizes that more
and more relevant data comes from the internet and other digital sources
that are largely beyond the scope of the current health privacy laws.
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@keilenberg #HIMAP #healthapps
3. What is Health 2.0?
[video]
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@keilenberg #HIMAP #healthapps Ref: YouTube video - Health 2.0 response to The Machine is Us/ing Us
8. YouTube downloads 48 hours of
video every 1 minute and more
than 3 billion views/day
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@keilenberg #HIMAP #healthapps
9. 8 in 10 internet users look online for
health information
Ref: Pew Research Center’s Internet & American Life Project and the
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@keilenberg #HIMAP #healthapps California HealthCare Foundation, Feb 2011
10. Who is driving the health discussions?
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@keilenberg #HIMAP #healthapps Ref: NMIncite, 09/2011
14. HIMAP
Health Information Map
• Purpose
– Develop a Health Information Map that will represent the
holistic and complicated view of all of the health
information that is generated on a daily basis within
computerized healthcare systems, the internet and social
media platforms, and through consumer purchases of
health related products and services
– To better understand what health information is created,
where it is created, and how it is used
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@keilenberg #HIMAP #healthapps
15. Health Information Map
• How
– Mobilize and partner with experts in the medical profession, electronic
health records, health information data transactions, internet search,
social media platforms, patient communities, and mobile/tele-
medicine systems
– Develop an activity based model and mapping of the healthcare
information/data that is generated on a daily basis related to disease:
initial symptoms, diagnosis, treatment, survival/recovery, and re-
occurrence
– Document key content creators and users of the data, primary
locations of where the data is generated, how the data is shared and
merged with other data sources, who owns the data, how the data is
stored, and the sensitivity or impact of the data
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@keilenberg #HIMAP #healthapps
18. Information Seeking, Use, and
Creation Behaviors
Purchase Seek
Create
Find
content/Comment/Rate
Share/Connect Use/Apply
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@keilenberg #HIMAP #healthapps
19. E-Rx/Pharmacy/PBM
Prior
Analytics Co
Insurance Alerts Authorization
Status Pharma
De-identified
Data Sets
Research
Claim De-identified
Adjucated Claim
information Data Sets
Health Claim Drinking
Type Contact info Medications Allergies
behaviors
Prescriber ID Insurance Procedures Immunizations Smoking history
Employment Diagnoses
Hospitalizations Other health
Analytics Co
Claims history history
Clearinghouse De-identified
& Provider
Biometric data
Laboratory Genetic Data Sets
seen/referred results Information
Insurance Co
Hospital Electronic Health Record
Analytics Co
De-identified
Data Sets
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@keilenberg #HIMAP #healthapps
20. Phone ID
User, Password Health Geo-
Preferences
Age, Gender habits location
and Interests
Drinking
behaviors
User,
Activities Contact Info Lab results
Password
Preferences
Religious
and
beliefs
Interests
Networks
Social IP Address
Allergies
Mobile Age, Gender
Phone App
Network
Political
Family Employment Activities
views
Medications Contact Info
Networks
Memberships Drinking
Affiliations behaviors Biometric
Procedures
data
Political views Religious beliefs Diagnoses
User, Password User, Password
Genetic info Age, Gender Genetic info Age, Gender
Employment Lab results Contact Info
Lab results Contact Info
Preferences and Drinking
Interests behaviors
Hospitalization
IP Address
s
Personal
Hospitalizations IP Address
Activities
Online Religious beliefs
Health Insurance Immunizations
Health Insurance
coverage
Immunizations
Network
coverage
Records
Networks Political views
Provider
Allergies
Provider seen/referred
Allergies
seen/referred
Memberships
Family
Affiliations
Medications Biometric data
Medications Biometric data
Procedures Diagnoses
Procedures Diagnoses
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@keilenberg #HIMAP #healthapps
21. Basic Framework
Example
User,
Genetic Password Age,
info Gender
Contact
Lab results
Info
Hospitaliza
IP Address
tions
Personal
Immunizati Health Insurance
ons coverage
Records
Provider
Allergies seen/refer
red
Medication Biometric
s data
Procedures Diagnoses
Internet User,
Password
User, Genetic info Age, Gender
Preferences Password Phone ID
and Age, Gender
Interests Lab results Employment Contact Info Health habits Geo-location
Preferences
Drinking
and Drinking
Activities Contact Info behaviors
Interests behaviors
User,
Hospitalizati Lab results
IP Address Password
ons
Online Religious
Preference
s and
Mobile
Religious
beliefs
Networks
Social IP Address
Activities
Health
beliefs Interests
Network Immunizatio Insurance Allergies Phone Age, Gender
Family Employment
ns
Network Political
coverage
App
Networks
views Political
Provider Activities
views
Allergies seen/referre Medications Contact Info
Membership d
Membership Drinking Family
s Affiliations behaviors s Affiliations
Networks
Biometric Biometric
Political Religious Medications Procedures
data data
views beliefs
Procedures Diagnoses Diagnoses 21
@keilenberg #HIMAP #healthapps
22. Proliferation
Example
User,
Genetic Password Age,
info Gender
Contact
Lab results
Info
Hospitaliza
IP Address
tions
Personal
Immunizati Health Insurance
ons coverage
Records Health habits
Phone ID
Geo-location
User,
Password Provider
Genetic info Allergies Age, Gender seen/refer
Drinking
red behaviors Phone ID
User, User,
User, Employment Medication Lab results
Preferences Password Lab results Contact Info Biometric Password Health habits Geo-location
and Age, Gender Preferences Password Preferences s data Preference
Drinking User, Religious
and Age, Gender
Interests
Interests
and
Interests
behaviors
Procedures Diagnoses Genetic info
Password s and
Age, Gender Interests Mobile beliefs
Phone ID
Drinking
behaviors
User,
Hospitalizati Lab results
Activities Contact Info
Activities onsContact Info
Online
IP Address
Lab results Employment Allergies Contact Info Phone Health habits
Age, Gender
Geo-location
Preference
Password
Religious
Activities
Religious
beliefs
Preferences
and
Drinking
App
Drinking s and
behaviorsInterests Mobile beliefs
Social Health Interests
behaviors
Lab results
Political
User,
Password
Networks
Networks
IP Address
Social Immunizatio
IP Address
Insurance
Hospitalizati Activities
IP Address Preference Allergies
views Phone Age, Gen
Network
ns
Network coverage
ons
Online Medications s and Contact Info
Mobile
Religious
beliefs
User, Network Networks
Genetic info
User,
PasswordPolitical
views Gender
Age,
Activities
Religious
beliefs Networks
Interests
App
Family
Preferences
Family
Interests
Password
and Employment Age, Gender
Allergies
Employment
Provider
seen/referre
Immunizatio
Health User,
Procedures
Allergies
Health habits
Insurance
Phone ID
Biometric Phone
data Geo-location
Medications
Activities Age, Gender
Political
views
Contact Info
Employment d ns
Activities Contact Info
Lab results
Family
Membership
PreferencesAffiliations
and
s
Drinking
Contact Info
Network
Genetic info
Password
Age, Gender
Political
coverage
Diagnoses
Drinking
behaviors
App Health habits
Phone ID
PoliticalNetworks Geo-location
Membership Drinking Biometric behaviors Networks Activities User,
s Affiliations Membership
behaviors Drinking Medications Interests data
views
Lab results views Biometric
Employment Provider Medications Procedures
Password Contact Info
Drinking
s Affiliations behaviors Lab results Contact Info data
Political Religious Hospitalizati AllergiesAddressPreferences Preference
seen/referre behaviors
Procedures Diagnoses IP Drinking Religious Diagnoses User,
views beliefs
Networks
Social
Political
views
Religious
beliefs
IP Address
ons
Activities
Online Religious
beliefs
and
InterestsFamily
Membership behaviors
s Affiliations
d s and
Interests Mobile Lab results
beliefs
Networks
Preference
Biometric Religious
Password
Procedures
Network Immunizatio
Health Hospitalizati Medications
ons
Insurance
Online
Biometric
Allergies
data IP Address
Phone s anddata
Age, Gender
Diagnoses Interests Mobile beliefs
Religious
Family Employment
ns
Network Political
coverage
Activities Procedures
Health
Diagnoses
beliefs
App Allergies
Political
Phone Age, Ge
Networks Activities
Allergies
Immunizatio
views
ns Provider
seen/referre Network
Insurance
Medicationscoverage
views
Contact Info App Political
Membership Drinking d Activities
Membership Political views
s Affiliations behaviors Family Networks Networks Medications Contact Info
s Affiliations views
Political Religious Biometric
Allergies
Provider
Procedures
seen/referre
Biometric
data
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@keilenberg #HIMAP #healthapps views beliefs Medications
Procedures Diagnoses
data
Family
Membership
s Affiliations
d Diagnoses
Procedures
Networks
Biometric
data
23. E-Rx/Pharmacy/PBM
Prior
Analytics Co
Insurance Alerts Authorization
Status Pharma
De-identified
Data Sets
Research
Claim De-identified
Adjucated Claim
information Data Sets
Health Claim Drinking
Type Contact info Medications Allergies
behaviors
Prescriber ID Insurance Procedures Immunizations Smoking history
Employment Diagnoses
Hospitalizations Other health
Analytics Co
Claims history history
Clearinghouse De-identified
& Provider
Biometric data
Laboratory Genetic Data Sets
seen/referred results Information
Insurance Co
Hospital Electronic Health Record
Analytics Co
De-identified
Data Sets
23
@keilenberg #HIMAP #healthapps
Notas del editor
Initial prototype was built to represent the raw data that was captured per Agent. Each box on the grid represents a single attribute. In the live prototype, when the cursor is hoovering over the box, a fly over window appears and shows the name of the attribute and the data value for that Agent.This represents the data that is captured by Gmail. The darker squares are ‘required’ fields. The lighter shade is data that is discretionary for the end user to decide what they will provide.
What this slide means:The YND score represents the amount of data attributes that are collected by an Agent. Each attribute that is required/absolute scores 2; each attribute that is discretionary and allows the user to decide if they are going to provide the information/content scores 1; each attribute that is not collected scores 0.The Sensitivity score represents the sum of attributes that an Agent collects. Each attribute has been assigned a ‘sensitivity’ rating: 1 = not sensitive. Even if the data attribute was revealed/released/known to others it would not cause any harm to the person whether in the form of discrimination, embarrassment etc. 2 = somewhere between 1 and 3... not an ideal definition, but we are working on getting this clarified.3 = very sensitive. If the data attribute were revealed/released/known to others it could cause harm (or very likely cause harm) to the individual whether directly or indirectly.The size of the orbs represent the sum of each attribute’s YND rating multiplied by the sensitivity ranking. Interpretation of the data – EHRs capture sensitive information, but most elements are considered discretionary. In comparison, there are many internet websites that capture almost as much information as EHRs, yet have higher scores on the Sensitivity axis.