CONSUMER HEALTH
INFORMATICS
Dr. Ali M. Hadianfard
Faculty member of AJUMS
http://www.alihadianfard.info/download.html
Further reading
Biomedical informatics computer applications in health care
and biomedicine (3rd edition), Edward H. Shortliffe, 2006
(chapter 14).
Consumer Health Informatics, Deborah Lewis, Gunther
Eysenbach, Rita Kukafka, P. Zoë Stavri, Holly B. Jimison, 2005
(whole book, specially chapters 1,4,5,8,9,11,12).
Definitions
Health information consumer as a person who seeks information about
health promotion, disease prevention, treatment of specific conditions,
and management of various health conditions and chronic illnesses.
Consumer Health Informatics:
 Is 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.
 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.
Definitions - continue
The CHI includes patient-focused informatics, health literacy and
consumer education as well as Information Resources,
Communications, Remote Monitoring, Videoconferencing, and
Telepresence. The focus is on information structures and processes that
empower consumers to manage their own health--for example health
information literacy, consumer-friendly language, personal health
records, and Internet-based strategies and resources. The shift in this
view of informatics analyses consumers' needs for information; studies
and implements methods for making information accessible to
consumers; and models and integrates consumers' preferences into
health information systems. Consumer informatics stands at the
crossroads of other disciplines, such as nursing informatics, public
health, health promotion, health education, library science, and
communication science.
The areas of interest to consumer health informatics
1. Bringing medical knowledge to consumers
2. Making electronic health records accessible to patients
3. Building decision aides to support consumer’s choices
4. Developing quality control mechanisms for health information
available over the Internet
Consumer action
When patients (healthcare consumers) have a serious
medical concern, they don’t just accept whatever
treatment their local doctor offers. They’ll spend hours
and hours on the Internet learning about their
condition, communicating with other patients and
clinicians who share their interests, and tracking down
every lead they can find on the best new treatments.
Consumer action – 10 Level
Dr. Ferguson has delineated 10 levels in which consumers participate in the access and use
of health care Information
 Level 1. e-Patients search for health information.
 Level 2. e-Patients exchange e-mail with family members and friends.
 Level 3. e-Patients seek guidance from online patient-helpers.
 Level 4. e-Patients participate in online support groups (discussion groups, mailing lists).
 Level 5. e-Patients join with other online self-helpers to research their shared concerns.
 Level 6. e-Patients use online medical guidance systems.
 Level 7. e-Patients interact with volunteer online health professionals via chat rooms.
 Level 8. e-Patients use the paid services of online medical advisors and consultants.
 Level 9. e-Patients engage in electronic conversations with their local clinicians.
 Level 10. e-Patients receive one-way electronic messages from their clinicians.
Self-help
Since 1980s: The importance of the patient as a full participant in health
care. A shift from the patient as the silent recipient of ministrations from a
wise, beneficent clinician to an active collaborator whose values,
preferences, and lifestyle not only alter predisposition to certain illnesses but
also shape the characteristics of desirable treatments.
Patient participation takes many forms:
 Shared decision-making by Evaluating and choosing therapeutic
strategies from a set of acceptable alternatives
 Self-care by Self-monitoring
 Collaborative practices by Implementing the therapies and evaluating
the effects.
The application of technology in consumer informatics
Technology
Application
Information Resources
Web-based information resources, patient access to electronic medical
records, direct access to health information
Messaging
E-mail, chat groups, consumer health networks, personal clinical electronic
communications (PCEC)
Telephone
Scheduling, triage
Remote monitoring
Remote monitoring of pacemakers, diabetes, asthma,
hypertension, CHF.
Remote interpretation
PACS, remote interpretation of radiographic studies
and other images, such as dermatologic and retinal
photographs.
Videoconferencing
Wide range of applications, from low-bandwidth
telehome care over telephone lines, to high-bandwidth
telementoring and telepsychiatry
Telepresence
Remote Surgery, telerobotics
Telepresence
 Telepresence involves systems that allow clinicians to not only view
remote situations, but also to act on them e.g., Telesurgery, nursing home
and other long-term facilities, remote video rounds
 Telepresence requires high bandwidth, low latency connections.
 uses Real-time (live interactive or Synchronous) technology
Roles of Health Professionals in Consumer Health Informatics
 1. professionals serve as sources for content e.g., Working in
conjunction with software designers
 2. professionals provide important guidance in moderating
public electronic discussion groups and responding to patients’
electronic messages
 3. clinicians become information brokers and interpreters for
patients
The quality criteria of Consumer Health Information web sites
Quality = totality of characteristics of a product or service that
satisfy stated or implied needs of the user
Ethical Principles
HSWG quality criteria for health web sites
Silberg’s criteria, 1997
The American Health Information Management Association
(AHIMA) also has published “Recommendations to Ensure Privacy
and Quality of Personal Health Information on the Internet
Ethical principles
A number of organizations have provided ethical codes or high-level ethical
guidelines for provision of consumer health information on the Web:
 HONcode: the Health on the Net Foundation, 1995 - The code
originally consisted of eight broad principles for medical
Webmasters
 eHealth Code: by Internet Healthcare Coalition
 HI-Ethics Code of Conduct: by a group of leading for-profit
consumer health information Web sites
 AMA: the American Medical Association
 E-Europe Criteria: In 2002, the European Commission published a
communication called “Quality Criteria for Health related Web
sites”
Health Summit Working Group (HSWG)quality criteria for health web sites
 The quality criteria were adopted by the Institute of Electrical and Electronics
Engineers (IEEE) and the American Public Health Association (APHA)
 Credibility: includes the source, currency, relevance/utility, and editorial
review process for the information.
 Content: must be accurate and complete, and an appropriate
disclaimer provided.
 Disclosure: includes informing the user of the purpose of the site, as well
as any profiling or collection of information associated with using the site.
 Links: evaluated according to selection, architecture, content, and back
linkages.
 Design: encompasses accessibility, logical organization (navigability),
and internal search capability.
 Interactivity: includes feedback mechanisms and means for exchange
of information among users.
 Caveats: clarification of whether site function is to market products and
services or is a primary information content provider.
Silberg’s Criteria
 Authorship: Authors and contributors, their affiliations, and relevant
credentials should be provided.
 Attribution: References and sources for all content should be listed
clearly, and all relevant copyright information noted.
 Disclosure: Web site “ownership” should be prominently and fully
disclosed, as should any sponsorship, advertising, underwriting,
commercial funding arrangements or support, or potential conflicts of
interest. This includes arrangements in which links to other sites are
posted as a result of financial considerations. Similar standards should
hold in discussion forums.
 Currency: Dates that content was posted and updated should be
indicated.
Privacy Principles
According to these principles, consumer-oriented commercial
Web sites that collect personal identifying information from or
about consumers online would be required to comply with the
four widely accepted fair information principles which can be
summarized as :
“Notice”
“Choice”
“Access”
“Security”
Notice
Means that Web sites should provide clear and conspicuous notice
of their information practices, including
What information they collect,
How they collect it(e.g., directly or through non-obvious means
such as “cookies”),
How they use it,
How they provide choice, access, and security to consumers,
whether they disclose the information collected to other entities,
and whether other entities are collecting information through the
site.
This is typically done in a privacy statement that is easily accessible
from the home page and from all points of data collection.
Choice
Means that Web sites should offer consumers choices
as to how their personal identifying information is used
beyond the use for which the information was
provided (e.g., to consummate a transaction).
Typically this is implemented by opt-in checkboxes
within the form used to gather personal information.
Access
Means that Web sites should offer consumers
reasonable access to the information a Web site
has collected about them, including a reasonable
opportunity to review information and to correct
inaccuracies or delete information.
Security
Means that Web sites should take
reasonable steps to protect the security of
the information they collect from consumers.
Protecting health information
special regulations exist for exchanging and protecting health
information. In the United States, the Privacy Rule of the Health
Insurance Portability and Accountability Act of 1996 (HIPAA)
creates a set of requirements and restrictions for he handling of
so-called Protected Health Information (PHI)
PHI refers to individually identifiable health information that is or
has been electronically maintained or electronically
transmitted by a covered entity, as well as such information
when it takes any other form.
Accessibility
“Access” to information is another major issue often
discussed in the context of consumer health
informatics. On a macro level (policy level) “access”
mostly refers to physical access to the Web. On a meso
and micro level, “accessibility” of information is also
often quoted as a “quality criterion” for health Web
sites.
Levels of accessibility barriers
Level 1 - Physical accessibility: the Internet is accessible from home, or only from a library or
school, in terms of convenience, privacy, filters, and costs. it is in the hands of health information
providers to prevent false-positive blockings—by labeling their health Web site with an appropriate
metadata vocabulary.
Level 2 – Findability: This refers mainly to an appropriate listing in search engines and directories
and cross-linking from relevant Web sites, so that users become aware of the Web site (external
findability). However,it also refers to findability of a certain piece of information within a Web site
(internal findability).
use appropriate keywords on all Web pages, Keywords should match terms users would use and
also include frequent misspelling
Level 3 - Readability, comprehendability: font size, font, and colors
Level 4 – Usability: is determined by the way the information is grouped and presented, by how
the user navigates through the information, and by the amount of help the system gives,
accessibility for special user groups such as seniors or disabled users
User’s guide: A CREDIBLE web site
A health information web site is trustworthy when is CREDIBLE
Current and frequently updated
References cited
Explicit purpose and intentions of the site
Disclosure of sponsors
Interests declared and no conflicts of interests
Balanced content, lists advantages and disadvantages
Level of Evidence indicated
Health Information Delivery Methods
Push: the user may initially join the system, but
subsequently the user receives information without the
need to request it further. E.g., mailing lists, pop-up
notification systems. Information “pushed” to the user is
assumed to be filtered so that it is of interest to the user
and the user will wish to view most items.
Pull: where resources are available for users to search or
browse and the user must take specific action (e.g.,
clicking a link) to retrieve an information resource.
Information that is “pulled” comes from large data sets
and only a small fraction of the data, which is identified
by the user as of definite interest, is retrieved for viewing
Health information distribution systems
There are several Ways to distribute health information:
 File Repository: File Transfer Protocol (FTP); e.g., Doc, PDF(PDF file viewer Adobe
Reader)
 Electronic Mail: in the body of e-mail messages or as e-mail attachments
 Mailing list: includes Announcement list or Newsletter (a one-way conduit of
information), and Discussion list (any opt-in subscriber may post)
 The World Wide Web: includes text and hyper text documents (Hypertext Markup
Language, HTML)
 Usenet: Newsgroups, It includes a world-wide network of bulletin board servers
accessible through the Internet. The system contains many thousands of active
discussion groups covering a wide variety of topics. Newsgroup servers use their own
communications protocol and client software
 Web-based discussion groups: e.g., Discussion Forums ; Weblogs or blogs are similar to
Web-based discussion groups except that the primary postings are usually all written
by the same person.
Using E-mail in patient care
• Prescription renewals
• Appointment requests
• Referrals to specialists
• Name, address, phone number, or insurance information changes
• Non-urgent medical issues
• Monitoring chronic conditions (e.g., diabetes, asthma, headaches)
• Monitoring effects of therapy
• Follow-up on behavioral interventions (e.g., smoking cessation,
dietary changes)
Situations in which E-mail should not be used
• Medical emergencies or time-sensitive issues because of its
asynchronous nature
• Issues requiring lengthy messages
• Issues requiring negotiation through long volleys of messages that
become cumbersome
• Communicating bad news, which is best done in person
• Sensitive issues at risk of disclosure due to potentially weak security
mechanisms
• When confronted with a patient who is unable to response
electronically
Disability Informatics
Disability informatics ,a subfield of medical informatics, seeks to
understand better how individuals with disabilities can use information
technology and information systems to address any functional issues
they encounter, improve their self-efficacy, and empower them to be
as independent as any other persons.
Disability informatics broadly defined can be any application that
collects, manages, and distributes information related to disability to
persons with disabilities, as well as to care providers and family and to
healthcare and rehabilitation professionals.
Disability Informatics- continue
A major area of disability informatics involves identifying and
addressing the particular needs and requirements of the
disabled population to utilize general information systems.
The main resolution is then educating and raising awareness
of these issues to information technology professionals and
the information technology (IT) industry.