What is Consumer Health Informatics.

Empowered Consumers

Tailored & Targeted health communication

Evaluation of Consumer Health Information Web Sites

Ethics & Consumer Health Informatics

Disability Informatics

What is Consumer Health Informatics??

Who are consumers?

All persons interested in health, health care, and health information.

Type of consumers:

1) Self-interest.

2) Interest for others.

Definitions:1-“A person who seeks information

about health promotion, disease prevention, treatment of specific conditions, and management of various health conditions and chronic illnesses” The American Medical Informatics Association, Consumer Health Informatics Working Group, and the International Medical Informatics Association, Nursing Informatics Interest Group.

2-“The study, development,

and implementation of computer and telecommunications applications and interface designed to be used by health consumers” Thomas William Ferguson

Consumers participate and use health information in 10 levels.” Ferguson”

First 6 levels ,No interaction between health professionals and consumers.

The remaining 4 levels, health professionals interact with consumers.

Level 1. Patients search for health information.

Level 2. Patients exchange e-mail with family members and friends.

Level 3. Patients seek guidance from online patient-helpers.

Level 4. Patients participate in online support groups.

Level 5. Patients join with other online self-helpers to research their shared concerns.

Level 6. Patients use online medical guidance systems.

Level 7. Patients interact with volunteer online health professionals.

Level 8. Patients use the paid services of online medical advisors and consultants.

Level 9. Patients engage in electronic conversations with their local clinicians.

Level 10. Patients receive one-way electronic messages from their clinicians.

Who are empowered health consumers??

Health consumers have enough knowledge and confidence to act on their behalf in every thing related to their or other’s health.

Consumer

Empowerment

Action

Levels of action: Public level

Formation of groups and forums to support others as well as themselves

Personal level

Solve their problems.

Control their cases by using available necessary resources

Types of CHI internet based computer technology which support empowerment:

1. Health related web-sites.

2. Experimental Internet-based Health Services.

3. Integrated clinical information systems access.

1. Health related web-sites

A place where data –related to certain topic-is gathered and health consumers can find peer support.

Examples

http:// www.alz.org

http://www.diabetes.org

http://www.stroke.org

2.Experimental Internet-based Health Services.The same as health related web sites but sophisticated experiments and observation strategies are done to gather information about the benefits of those services and monitor users to optimize their use of the service.

Examples ComputerLink projects??? CHESS project Baby CareLink???

2.Experimental Internet-based Health Services.

CHESS project

CHESS for (The Comprehensive Health Enhancement Support System)

It targets persons with complex health problems as (Cancer, AIDS…etc),each problem has a specific module.

Each user logs in using user name & password.

Monitor the system use to guide the user to unused services

Collect important health information (Blood pressure, blood sugar..etc) to design tailored messages to be sent or popped up to the user.

3.Integrated clinical information systems access

Integrated with the formal health information resources (Lab notes, clinical reports...etc).

By other words, It support direct access to the formal reports

Example

PatCIS

3.Integrated clinical information systems access

PatCIS project

PatCIS (Patient accessible to Clinical Information System)

Enable patients to view their clinical records and add their self monitoring information.

Communication Approaches

General Approach.

Targeting Approach

Tailoring Approach

General Targeting Tailoring

Units ofassessment

Whole population

Subgroups Individuals

Types of data collected

No data collected

Demographic psychosocial

Using of data To identify the characteristics of the subgroup

To identify the characteristics of the individual

Final content The same for whole population

The same for Individuals in the subgroup but different for each subgroup

Different for each Individual

Examples Newspapers,Magazines, Television.....etc

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Units of assessment Latinas in San Francisco

Data collected *Having a lower reading level *Speaking Spanish*Liking bright and bold colors *Holding beliefs related to cancer and cancer prevention.

Using of data *Wrote the booklet at a sixth grade reading level and in Spanish.*Used bright colors, bold graphics. *Addressed fatalistic attitudes and ethnic-specific misconceptionsabout the causes of cancer.

Final content Educational booklet to promote breast and cervical cancer screening called “Mujer y el Cancer”

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Units of assessment Individuals

Types of data collected *Race & Age*Stage of readiness to get a mammogram*Breast cancer risk*Barriers to getting a mammogram, beliefs about mammography and breast cancer

Using of data *Drawing of a woman*Caption under the drawing (stage of readiness to get a mammogram). *Text messages

Final content 400 000 different letters were sent to women at their homes

Targeting

Units of assessment Latinas in San Francisco

Data collected *Having a lower reading level *Speaking Spanish*Liking bright and bold colors *Holding beliefs related to cancer and cancer prevention.

Using of data *Wrote the booklet at a sixth grade reading level and in Spanish.*Used bright colors, bold graphics. *Addressed fatalistic attitudes and ethnic-specific misconceptionsabout the causes of cancer.

Final content Educational booklet to promote breast and cervical cancer screening called “Mujer y el Cancer”

Tailoring

Units of assessment Individuals

Types of data collected *Race & Age*Stage of readiness to get a mammogram*Breast cancer risk*Barriers to getting a mammogram, beliefs about mammography and breast cancer

Using of data *Drawing of a woman*Caption under the drawing (stage of readiness to get a mammogram). *Text messages

Final content 400 000 different letters were sent to women at their homes

Who needs tailoring systems??

1) People at high risk/have chronic condition.

2) People with cancer

Examples of tailoring systems:

• Nutritional tailoring system

• PEAS (Patient Education and Activation System) project

What is quality?

“Totality of characteristics of a product or service that satisfy stated or implied needs of the user”

Importance of web sites quality for different stack-holders:

1) Consumers: to determine trustworthy sites from where they can select health information.

2) Organization ”responsible of certification”: to

justify there decision either to certify that web site or not.

3) Developers and health professionals: to answer consumer question about GOOD health information sites.

Quality evaluation initiatives following one of 3 Mechanisms

Codes of conducts

3rd party certification

Tool-based evaluation

Codes of conduct 3rd Party certification Tool based evaluation

Based on set of principles

Based on set of principles

Pre defined questionnaire giving quality score

Self certification and/or logo bearing sites

Recurrent validation of the compliance

Used by consumer tomeasure the quality of the site

No payment fees Payment fees for the certifying organization

Non profit Organization

Profit Organization

*HONcode*eHCE

*URAC*TNO QMIC

*DISCERN

Code of Conducts

HON code.’ http://www.hon.ch’

• Designed by Health On Net ‘non governmental non profit foundation’.

• Used by more than 6800 websites and covering 118 countries.

• HON toolbar: Is a browser and indicate the certification status of the site

Advertising

policy

Principles of HON code

Financial disclosure

Transparency

Attribution

Privacy

ComplementarilyAuthoritative

Justifiability

Some HON code-certified web sites in Egypt

E-health code of ethics.

• Designed by Internet Healthcare Coalition non profit organization.

• More elaborated than HONcode

Accountability

Principles of E-health

code

Responsible Partnering

Quality

Professionalism

Condor

Informed Consent

Honesty

Privacy

3rd Party Certification

URAC http://www.urac.org/accreditation/

• Accredits different types of organizations including health care organization.

• There are different types of accreditation programmes (the entire organization or one functional area).

• It depends on standards (developed by group of experts in the health care field and updated each 3 years)

TNO QMIC

• QMIC stands for : Quality for Medical Information and Communication.

• System developed by TNO health trust.

• Certify Organization’s internet pages according to QMIC Essential Requirements.

TNO QMIC

• The system depends on 2 bodies for certification

• 1.NBF(Notified Body Function)

• 2.TIP(Trusted Independent 3rd Party)

Tool based Evaluation

DISCERN http://www.discern.org.uk/

• Is brief questionnaire , helps consumers to assess the quality of health information in web sites.

• The questionnaire consists of three sections 1. Is the publication reliable ?- Covered by 8 questions (1-8)

2. How good is the quality of information on treatment choices?- Covered by 7 questions (9-15)

3. Overall Rating of the Publication - One question (16)

Basic ethical Principles

Autonomy

Veracity

Beneficence

Non-maleficence

Justice

Why Ethics are critical for CHI applications ??

1) Health is important & Risks are high

2) Consumers are not experts and can’t easily detect false information.

3) Anyone, anywhere can create health related web sites

4) Technology never stop & capabilities increase with violation of main ethics

What is disability?

“Any restriction or lack of ability to perform an activity in the manner or within the range considered normal for a human being” World Health Organization

Classification of disability:

1) Mobility “Physical motor & speech communication ”

2) Sensory ”Visual & aural”

3) Cognitive “Intellectual & language communication”

***Multiple Impairments

What is Disability informatics?

“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”

Select one site designed to support at least one type of disabilities

Write a one- page report about ComputerLink projects OR Baby CareLink as a type of Experimental Internet-based Health Services.