CONSUMER HEALTH INFORMATICS

Dr. Ali M. HadianfardFaculty 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 studiesand other images, such as dermatologic and retinalphotographs.

Videoconferencing Wide range of applications, from low-bandwidthtelehome care over telephone lines, to high-bandwidthtelementoring 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 systemsThere 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.