American Association of Sex Educators, Counselors, and Therapists 35 th Annual Conference: The Tapestry of Sexuality Legal and Ethical Issues Related to Building a Sexual Health Information Network

Topics for Today's Discussion What do we use the Internet ? What are problems associated with online health searches, findings, and information? How does reliability and quality factor into online sexual health information findings? Who controls reliability, quality, and privacy? What are the legal and ethical implications to professional practitioners? Should you rely on email, support groups, and websites for sexual health information?

What do we use the Internet ?

What are problems associated with online health searches, findings, and information?

How does reliability and quality factor into online sexual health information findings?

Who controls reliability, quality, and privacy?

What are the legal and ethical implications to professional practitioners?

Should you rely on email, support groups, and websites for sexual health information?

Topics for Today's Discussion Are healthcare intranets a possible solution in providing security, privacy, and content reliability? What are current software solutions that educators, therapist, and counselors can use ? Can healthcare intranets solve some issues of privacy, security, and reliability? How can educators, therapists, and counselors use Intranets in practice?

Are healthcare intranets a possible solution in providing security, privacy, and content reliability?

What are current software solutions that educators, therapist, and counselors can use ?

Can healthcare intranets solve some issues of privacy, security, and reliability?

How can educators, therapists, and counselors use Intranets in practice?

Issues of Reliability and Credibility

Current Electronic Health Influences According to Harris Interactive Survey released in May 2003 (400 Medical Doctors & 10,000 Patients) Internet use related to healthcare activities is growing more pervasive among health professionals and patients Physicians now spend 3 hours per week online Physicians use the Internet to augment their clinical knowledge 40% of the MD’s use at least one of the these tools: electronic prescribing, electronic medical records, or remote disease monitoring 80% of all patients search for health information online

According to Harris Interactive Survey released in May 2003 (400 Medical Doctors & 10,000 Patients)

Internet use related to healthcare activities is growing more pervasive among health professionals and patients

Physicians now spend 3 hours per week online

Physicians use the Internet to augment their clinical knowledge

40% of the MD’s use at least one of the these tools: electronic prescribing, electronic medical records, or remote disease monitoring

80% of all patients search for health information online

How do we use the Internet ? On an average day, about 73 million Americans go online daily according to Pew Internet & American Life Survey

On an average day, about 73 million Americans go online daily according to Pew Internet & American Life Survey

Health Seeker Profile 6 million Americans go online on a typical day, this out numbers Americans who visit doctors every day 72 % of Females as compared to 51% of Males 71% of those between 50 and 64 years of age as compared to 53% of those between 18 and 29 years of age *There are no significant differences in these percentages when compared by ethnicity.

6 million Americans go online on a typical day, this out numbers Americans who visit doctors every day

72 % of Females as compared to 51% of Males

71% of those between 50 and 64 years of age as compared to 53% of those between 18 and 29 years of age

*There are no significant differences in these percentages when compared by ethnicity.

Granular Snapshot by Pew Report Additional Data 93% look for specific information related to disease or condition 64% look for information about prescription drugs 55% gather information before visiting a doctor 39% look for information about mental health 33% seek information about sensitive health topics or difficult to talk about conditions

Additional Data

93% look for specific information related to disease or condition

64% look for information about prescription drugs

55% gather information before visiting a doctor

39% look for information about mental health

33% seek information about sensitive health topics or difficult to talk about conditions

The Impact of these Online Activities

Due Diligence by Health Seekers Health seekers fall into three broad groups 25% are vigilant about verifying site credibility 25% are vigilant about verifying site reliability 50 % rely on common sense and rarely check health information against reliability or credibility

Health seekers fall into three broad groups

25% are vigilant about verifying site credibility

25% are vigilant about verifying site reliability

50 % rely on common sense and rarely check health information against reliability or credibility

Health Seeker Credibility Killers Too Commercial in Nature Undeterminable Source of Information No Information on Content Update No Seals of Approval, Sloppy Design, or Outdated or Incorrect Information

Too Commercial in Nature

Undeterminable Source of Information

No Information on Content Update

No Seals of Approval, Sloppy Design, or Outdated or Incorrect Information

What are other problems associated with online health searches, findings, and information? Information Reliability and Quality Site Credibility and Full Disclosure of Ownership Consumer Security and Privacy Information Consistency Information Overload Lack of Adoption of Electronic Health Ethics Lack of Adoption of Electronic Health Technology Standards Weak adherence to Americans with Disabilities Act compliance for online content

Information Reliability and Quality

Site Credibility and Full Disclosure of Ownership

Consumer Security and Privacy

Information Consistency

Information Overload

Lack of Adoption of Electronic Health Ethics

Lack of Adoption of Electronic Health Technology Standards

Weak adherence to Americans with Disabilities Act compliance for online content

Identification of reliability and quality factors in online sexual health information findings Information Overload Issue Google Search for “MALE IMPOTENCE” yields 789,000 results in a Search that took 0.14 seconds Top 3 Commercial Sponsor Links Stay Erect Site – Herbal Alternative Sexual Stimulants – Herbal Alternative Generic Viagra - Sildenafil Citrate Meltabs

Information Overload Issue

Google Search for “MALE IMPOTENCE” yields 789,000 results in a Search that took 0.14 seconds

Top 3 Commercial Sponsor Links

Stay Erect Site – Herbal Alternative

Sexual Stimulants – Herbal Alternative

Generic Viagra - Sildenafil Citrate Meltabs

Identification of reliability and quality factors in online sexual health information findings Reliability Factor Top of Google Search for “Impotence” Impotence.org – Sponsored by Lilly, Pfizer, TAP, and Warner Lambert Pharmaceuticals Quality of Experience Factor Random Selection of Google Search Listing About Men’s Health related Site Interrupted by Pop-up Ad of Men’s Health Problems 15 Active Links – Only 3 links directly related to topic with only 1 link that produced quality information

Reliability Factor

Top of Google Search for “Impotence”

Impotence.org – Sponsored by Lilly, Pfizer, TAP, and Warner Lambert Pharmaceuticals

Quality of Experience Factor

Random Selection of Google Search Listing

About Men’s Health related Site

Interrupted by Pop-up Ad of Men’s Health Problems

15 Active Links – Only 3 links directly related to topic with only 1 link that produced quality information

Assessment of Health Information Sources Live encounter with medical or health professional Live encounter with Credentialed Educators, Therapists, Counselors Licensed Medical Doctors (private intranet) Credentialed Nurses, Educators, Therapists, Counselors (private intranet)

Live encounter with medical or health professional

Live encounter with Credentialed Educators, Therapists, Counselors

Licensed Medical Doctors (private intranet)

Credentialed Nurses, Educators, Therapists, Counselors (private intranet)

Assessment of Health Information Sources Health Science Sites (open web) Medical Document Internet Searches Government Agency Sites Top Rated Internet Searches General Internet Searches

Health Science Sites (open web)

Medical Document Internet Searches

Government Agency Sites

Top Rated Internet Searches

General Internet Searches

Solutions that enhance reliability and quality factors in health searches Current Advice Check Sites Sponsors Check for Date of Last Information Post Set Aside Time for Health Searches Compare findings against at least 4 related sites Look for Seals of Approval Health on the Web Principles Electronic Health Code of Ethics

Current Advice

Check Sites Sponsors

Check for Date of Last Information Post

Set Aside Time for Health Searches

Compare findings against at least 4 related sites

Look for Seals of Approval

Health on the Web Principles

Electronic Health Code of Ethics

Legal and Ethical Issues

Threats to the Health Care Information Internal to Patient Care Institution – Clinics, Physician Offices, Hospitals, Nursing Homes, Therapist Offices Secondary User Settings - Service Payers, Administrative Reviews, Clinical Pathways, Quality Reviews Social Uses – Life and Auto Insurance, Employment, Public Health, Medical Research, Social Welfare, Law Enforcement Type of Breaches Accidental Disclosures Security Breaches Insider Curiosity Insider Subordination

Internal to Patient Care Institution – Clinics, Physician Offices, Hospitals, Nursing Homes, Therapist Offices

Secondary User Settings - Service Payers, Administrative Reviews, Clinical Pathways, Quality Reviews

Social Uses – Life and Auto Insurance, Employment, Public Health, Medical Research, Social Welfare, Law Enforcement

Type of Breaches

Accidental Disclosures

Security Breaches

Insider Curiosity

Insider Subordination

What are the legal and ethical implications to professional practitioners? Hippocratic Oath – 2000 Years Old “ What I may see or hear in the course of the treatment or even outside of the treatment in regard to the life of men, which on no account one must spread abroad, I will keep to myself, holding such things shameful to be spoken about ..” American Medical Association – Code of Ethics 2003 “ A physician shall respect the rights of patients, colleagues, and other health professionals, and shall safeguard patient confidences and privacy within the constraints of the law.”

Hippocratic Oath – 2000 Years Old

“ What I may see or hear in the course of the treatment or even outside of the treatment in regard to the life of men, which on no account one must spread abroad, I will keep to myself, holding such things shameful to be spoken about ..”

American Medical Association – Code of Ethics 2003

“ A physician shall respect the rights of patients, colleagues, and other health professionals, and shall safeguard patient confidences and privacy within the constraints of the law.”

Consider these Definitions Privacy – The right and desire of a person to control the disclosure of personal health information. Confidentiality – The controlled release of personal health information to a care provider or information custodian under an agreement that limits the extent and conditions under which that information may be used or further released. Security – A collection of policies, procedures, and safeguards, that help maintain the integrity and availability of information systems and control access to their content.

Privacy – The right and desire of a person to control the disclosure of personal health information.

Confidentiality – The controlled release of personal health information to a care provider or information custodian under an agreement that limits the extent and conditions under which that information may be used or further released.

Security – A collection of policies, procedures, and safeguards, that help maintain the integrity and availability of information systems and control access to their content.

How do these ethical standards apply to the age of electronic health? As paper based health records become electronic medical records there will be increased threats to healthcare information due to proliferation of access points. WHAT IS HIPAA? The Health Insurance Portability & Accountability Act of 1996 (August 21), Public Law 104-191, which amends the Internal Revenue Service Code of 1986. Also known as the Kennedy-Kassebaum Act. H.I.P.A.A. as related to electronic medical records provides security standards protecting the confidentiality and integrity of "individually identifiable health information," past, present or future.

As paper based health records become electronic medical records there will be increased threats to healthcare information due to proliferation of access points.

WHAT IS HIPAA?

The Health Insurance Portability & Accountability Act of 1996 (August 21), Public Law 104-191, which amends the Internal Revenue Service Code of 1986. Also known as the Kennedy-Kassebaum Act.

H.I.P.A.A. as related to electronic medical records provides security standards protecting the confidentiality and integrity of "individually identifiable health information," past, present or future.

Technological Interventions

Compliance with Legal and Ethical Issues on the World Wide Web Who controls reliability, quality, and privacy? Content Producers Recommendations Follow and Adhere to Electronic Health Ethics and Principles Join Initiatives such as Internet Healthcare Coalition – IHC.NET Adhere to Health on the Net Foundation – Internet Principles - HON.CH

Who controls reliability, quality, and privacy?

Content Producers

Recommendations

Follow and Adhere to Electronic Health Ethics and Principles

Join Initiatives such as Internet Healthcare Coalition – IHC.NET

Adhere to Health on the Net Foundation – Internet Principles - HON.CH

Selected Electronic Health Internet Ethics Adopt Privacy Policies Provide users with reasonable notice of our information practices, including disclosure of collection or use of any information about the user; collection or use of aggregate data; and what, if any, access to personal information collected on our health web site we provide to unrelated third parties.

Adopt Privacy Policies

Provide users with reasonable notice of our information practices, including disclosure of collection or use of any information about the user; collection or use of aggregate data; and what, if any, access to personal information collected on our health web site we provide to unrelated third parties.

Selected Electronic Health Internet Ethics Enhanced Privacy Protection for Health-Related Personal Information If we collect health-related personal information, we will only use it for the purposes for which a reasonable consumer would expect us to use it or as agreed to by the consumer. Safeguarding Consumer Privacy in Relationships with Third Parties We will take appropriate precautions to prevent inadvertent disclosures of personal information to third parties and will take immediate steps to eliminate such disclosures, if they occur, once they have come to our attention.

Enhanced Privacy Protection for Health-Related Personal Information

If we collect health-related personal information, we will only use it for the purposes for which a reasonable consumer would expect us to use it or as agreed to by the consumer.

Safeguarding Consumer Privacy in Relationships with Third Parties

We will take appropriate precautions to prevent inadvertent disclosures of personal information to third parties and will take immediate steps to eliminate such disclosures, if they occur, once they have come to our attention.

Selected Electronic Health Internet Ethics Disclosure of Ownership and Financial Sponsorship Disclose those who have major financial interests in us or the health web sites we operate, and those who give us significant funding or other assistance Quality of Health Information Content Do not make claims of therapeutic benefit without reasonable support, or deliberately provide false or misleading information.

Disclosure of Ownership and Financial Sponsorship

Disclose those who have major financial interests in us or the health web sites we operate, and those who give us significant funding or other assistance

Quality of Health Information Content

Do not make claims of therapeutic benefit without reasonable support, or deliberately provide false or misleading information.

Selected Electronic Health Internet Ethics Qualifications Provide the credentials and qualifications of persons responsible for health care services delivered via our consumer health web sites. If applicable, we will also provide information about professional licensure. Disclosure of Limitations Advise consumers of any limitations of our health web site as a source of health care services. In particular, we will state that online health services and health information content cannot replace a health professional-patient relationship, and that consumers should always consult with a professional for diagnosis and treatment of their specific health problems.

Qualifications

Provide the credentials and qualifications of persons responsible for health care services delivered via our consumer health web sites. If applicable, we will also provide information about professional licensure.

Disclosure of Limitations

Advise consumers of any limitations of our health web site as a source of health care services. In particular, we will state that online health services and health information content cannot replace a health professional-patient relationship, and that consumers should always consult with a professional for diagnosis and treatment of their specific health problems.

Electronic Mail - Risks, Rights, and Responsibilities Electronic Communications Privacy Act 1986 Primary Legislation that governs electronic messaging systems Most agree that ECPA does protect individual privacy extended to electronic communications; however, this does not protect intra-organizational communication systems and private email systems. Currently laws governing electronic communication are found in judicial interpretations

Electronic Communications Privacy Act 1986

Primary Legislation that governs electronic messaging systems

Most agree that ECPA does protect individual privacy extended to electronic communications; however, this does not protect intra-organizational communication systems and private email systems.

Currently laws governing electronic communication are found in judicial interpretations

The Enlightened Email User Who owns electronic mail? The organization may claim rights of ownership of electronic communication since you may be using company purchased equipment. You may claim copyright without any notice and may even retain intellectual property rights in some cases Privacy and ownership of electronic communications are separate issues

Who owns electronic mail?

The organization may claim rights of ownership of electronic communication since you may be using company purchased equipment.

You may claim copyright without any notice and may even retain intellectual property rights in some cases

Privacy and ownership of electronic communications are separate issues

The Enlightened Email User When is email considered private? Electronic Communications Privacy Act 1986 provisions that all electronic mail systems are protected from unauthorized users who may alter, view, steal, or damage the system. Privacy is an open issue when applied to internal communication messaging systems as administrators may disclose message content. All electronic mail may be subpoenaed and be used in court as evidence.

When is email considered private?

Electronic Communications Privacy Act 1986 provisions that all electronic mail systems are protected from unauthorized users who may alter, view, steal, or damage the system.

Privacy is an open issue when applied to internal communication messaging systems as administrators may disclose message content.

All electronic mail may be subpoenaed and be used in court as evidence.

The Enlightened Email User This suggested rule may be applied to raise your email enlightenment quotient. Be aware that any electronic communication content may become public. This means if you can’t bear to see the contents on a traditional post card or on the front page of your local paper, then perhaps the content should not be written.

This suggested rule may be applied to raise your email enlightenment quotient.

Be aware that any electronic communication content may become public. This means if you can’t bear to see the contents on a traditional post card or on the front page of your local paper, then perhaps the content should not be written.

Applying Information Awareness Email Risks Electronic communication can be very useful, as long as it is encrypted and secured. Chat Support Groups The content may not be protected, but your identity may be kept anonymous. The legal debate is in full motion. Websites Read the user policies and site disclaimers

Email Risks

Electronic communication can be very useful, as long as it is encrypted and secured.

Chat Support Groups

The content may not be protected, but your identity may be kept anonymous. The legal debate is in full motion.

Websites

Read the user policies and site disclaimers

How does this apply to you ? When making decisions about selecting clinical information systems, support information systems, wireless mobile systems you must ask these questions. Is the system H.I.P.A.A. compliant? Is there security built in the system to prevent disclosures? Do I have audit trail capabilities built-in the system ? Do my internal security policies address evaluation, compliance and user training?

When making decisions about selecting clinical information systems, support information systems, wireless mobile systems you must ask these questions.

Is the system H.I.P.A.A. compliant?

Is there security built in the system to prevent disclosures?

Do I have audit trail capabilities built-in the system ?

Do my internal security policies address evaluation, compliance and user training?

Practical Application

The Sexual Health Information Intranet A sexual health information intranet dedicated to providing private, secure, and reliable information about sexual health information, education, counseling, therapy, product information and other resources throughout the human sexual lifecycle. It can incorporate a variety of content that is shared only with its authorized users. Content may be produced, linked, or created by the site administrators.

A sexual health information intranet dedicated to providing private, secure, and reliable information about sexual health information, education, counseling, therapy, product information and other resources throughout the human sexual lifecycle.

It can incorporate a variety of content that is shared only with its authorized users. Content may be produced, linked, or created by the site administrators.

Building a Sexual Health Information Intranet Main Entry: Intranet Function: Noun A computer network connecting an affiliated set of clients using standard internet protocols, esp. TCP/IP and HTTP. IP-based network of nodes behind a firewall, or behind several firewalls connected by secure, possibly virtual, networks usually a corporation, accessible only by the organization's members, employees, or others with authorization.

Main Entry: Intranet

Function: Noun

A computer network connecting an affiliated set of clients using standard internet protocols, esp. TCP/IP and HTTP.

IP-based network of nodes behind a firewall, or behind several firewalls connected by secure, possibly virtual, networks usually a corporation, accessible only by the organization's members, employees, or others with authorization.

Comparison of Technologies Internet Packets are public IP protocol suite Cost spread out Problematic mgmt Weak policies No enforcement No controlling org Intranet Packets are private IP protocol suite Enterprise bears costs Enterprise mgmt Strong policies Central enforcement Security Enterprise controls

Internet

Packets are public

IP protocol suite

Cost spread out

Problematic mgmt

Weak policies

No enforcement

No controlling org

Intranet

Packets are private

IP protocol suite

Enterprise bears costs

Enterprise mgmt

Strong policies

Central enforcement

Security

Enterprise controls

Intranet Software Solutions Many products exist within this software category The service selection ranges from dedicated server products to hosted application service contracts. The price per installation ranges from 50K per year to a monthly fee per user ($4.00 per month) Free applications exist, but are advertisement driven and may not offer security privacy.

Many products exist within this software category

The service selection ranges from dedicated server products to hosted application service contracts.

The price per installation ranges from 50K per year to a monthly fee per user ($4.00 per month)

Free applications exist, but are advertisement driven and may not offer security privacy.

Intranet Software Vendors Intranets.com Microsoft IBM Oracle Hummingbird Each listed company has products that create intranets and produces software to create intranets. Hosted applications exist that deliver instant intranets or pre-packed solutions are also available.

Intranets.com

Microsoft

IBM

Oracle

Hummingbird

Each listed company has products that create intranets and produces software to create intranets.

Hosted applications exist that deliver instant intranets or pre-packed solutions are also available.

Intranet Software Features Document Management Group Calendar Contact Manager Publishing Tools Database Development Discussion Forums Central Administration Licensed or Hosted Software Web Mail Enabled Multi Lingual These features assist professionals in building content, disseminating reliable health information, and building community from within a secure private network

Document Management

Group Calendar

Contact Manager

Publishing Tools

Database Development

Discussion Forums

Central Administration

Licensed or Hosted Software

Web Mail Enabled

Multi Lingual

These features assist professionals in building content, disseminating reliable health information, and building community from within a secure private network

Dedicated Professional Use Sex Educators Health Administrators Psychiatrists Therapists Professional Counselors These professionals would use an intranet software infrastructure to build content, disseminate reliable health information, and build community within a secure private network

Sex Educators

Health Administrators

Psychiatrists

Therapists

Professional Counselors

These professionals would use an intranet software infrastructure to build content, disseminate reliable health information, and build community within a secure private network

Incorporating a Multidisciplinary Approach Family Science Professionals Sex Educators Licensed Therapists Counseling Professionals Registered Nurses Physicians Registered Clients Registered Vendors Many academic and scientific disciplines can contribute to the creation of a content network. A intranet can support 1-1000 clients.

Family Science Professionals

Sex Educators

Licensed Therapists

Counseling Professionals

Registered Nurses

Physicians

Registered Clients

Registered Vendors

Many academic and scientific disciplines can contribute to the creation of a content network.

A intranet can support 1-1000 clients.

Challenge of Building Intranets Integrating data from diverse sources Providing access to all potential stakeholders in an organization or group Presenting information in the cognitive format appropriate for each population Guaranteeing the performance, reliability, availability, and security of the intranet

Integrating data from diverse sources

Providing access to all potential stakeholders in an organization or group

Presenting information in the cognitive format appropriate for each population

Guaranteeing the performance, reliability, availability, and security of the intranet

Intranet Design Standards Jacob Nielsen and Steve Krug: Usability Engineers Nielsen’s Big Three Strong directory services Active search algorithm Live news feeds Employ usability testing Krug’s Principles Design for scanning Provide effortless navigational choices Omit needless words Provide great navigation

Jacob Nielsen and Steve Krug: Usability Engineers

Nielsen’s Big Three

Strong directory services

Active search algorithm

Live news feeds

Employ usability testing

Krug’s Principles

Design for scanning

Provide effortless navigational choices

Omit needless words

Provide great navigation

Krug’s First Law: Don’t Make Me Think Law: Nothing important should ever be more than two clicks away. Message: The best method for creating content is to make the information self evident or self explanatory. Bonus Point: Most intranet products provide good usability and proper visual design.

Law: Nothing important should ever be more than two clicks away.

Message: The best method for creating content is to make the information self evident or self explanatory.

Bonus Point: Most intranet products provide good usability and proper visual design.

Critical Task Analysis Development Information Reliability Security and Privacy Issues that present an information architect challenges to building reliable information networks. Professionals can successfully participate by incorporating intranets into their organizations

Development

Information Reliability

Security and Privacy

Issues that present an information architect challenges to building reliable information networks.

Professionals can successfully participate by incorporating intranets into their organizations

Can healthcare intranets solve some issues of privacy, security, and reliability? YES, with proper security and privacy features healthcare intranets solve some issues of privacy, security, and reliability. Security and Privacy Features Physical Security System Redundancy Perimeter Defense Data Security Back-up User Authentication Operating System Security Optional SSL Data Encryption

YES, with proper security and privacy features healthcare intranets solve some issues of privacy, security, and reliability.

Security and Privacy Features

Physical Security

System Redundancy

Perimeter Defense

Data Security

Back-up

User Authentication

Operating System Security

Optional SSL Data Encryption

How can sex educators, therapists, and professional counselors use Intranets in practice? Applications Registered Client Portal Private Online Therapy Patient Education Directed Patient Research Staff Development Online Testing Developing Specialized Content

Applications

Registered Client Portal

Private Online Therapy

Patient Education

Directed Patient Research

Staff Development

Online Testing

Developing Specialized Content

Selected Online Resources You may access this presentation, view models, and test live intranet technologies by logging on at the following web address. FAMILYSCIENCE.COM On behalf of Dr. Wallet and myself, we wish to thank A.A.S.E.C.T. for the opportunity to present today. We also thank today's attendees for your attendance, participation, and questions.

You may access this presentation, view models, and test live intranet technologies by logging on at the following web address.

FAMILYSCIENCE.COM

On behalf of Dr. Wallet and myself, we wish to thank A.A.S.E.C.T. for the opportunity to present today. We also thank today's attendees for your attendance, participation, and questions.