BusinessTheme

Organizations and individuals providing health information, products, or services on the Internet have an obligation to

    (A) safeguard users' privacy
    (B) obtain users' informed consent when gathering personal information

4. Best Commercial Practices

Guiding Principle:

Organizations and individuals who sponsor, promote, or sell health information, products, or services on the Internet have an obligation to

    (A) disclose any information a reasonable person would believe might influence his or her decision to purchase or use products or services
    (B) be truthful and not deceptive
    (C) engage in responsible business relationships and affiliations
    (D) guarantee editorial independence
    (E) disclose the site's privacy policy and terms of use

5. Best Practices for Provision of Health Care on the Internet by Health Care Professionals

Guiding Principle:

Health care professionals and organizations who provide health information, products, or services on the Internet have an obligation to

    (A) adhere to the highest standards of professional practice
    (B) help patients to understand how the Internet affects the relationship between professional and patient while adapting the highest professional standards to the evolving interactions made possible by the Internet

Definitions

Health Information

    Health information includes information for staying well, preventing and managing disease, and making other decisions related to health and health care.
    It includes information for making decisions about health products and health services.
    It may be in the form of data, text, audio, and/or video.
    It may be subject to frequent changes due to the updating of websites or user‑provider interactivity

1. Candor & Trustworthiness

Guiding Principle: Organizations and individuals providing health information, products, or services on the Internet have an obligation to candidly disclose

    (A) those factors that could influence content
    (B) the potential risks of users providing personal information on the Internet

Principle Part (A): Content

People who use the Internet for health‑related purposes must have sufficient information to make fully informed decisions about the integrity of content and the potential for bias. Thus

    Organizations and individuals offering health information, products, or services on the Internet have an obligation to
    (1) prominently, clearly, and accurately indicate
    (2) clearly distinguish advertising from educational or scientific content

Principle Part (B): Risk

People may not realize that personal information may be collected when they use the Internet. And they may not understand that declining to provide personal data may affect the information or services they receive. Thus

    Organizations and individuals offering health information, products, or services on the Internet have an obligation to
    (1) alert users to the potential risks to the privacy of personal information on the Internet (for example, that third parties may be collecting information without the site's knowledge)
    (2) provide clear, complete, and accurate information regarding
    (4) clearly disclose the consequences, if any, of refusing to provide personal information
    (5) clearly describe the accountability mechanism used by the organization or site and how to contact the responsible party

2. Quality

Guiding Principle: Organizations and individuals offering health information, products, or services on the Internet have an obligation to

    (A) provide high quality information, products, or services
    (B) provide means for users to evaluate the quality of health information

Principle Part (A): Quality

People who use the Internet for health‑related purposes need credible, well‑supported information in order to make prudent decisions. Thus

    Organizations and individuals offering health information, products, or services on the Internet have an obligation to provide information that is
    (1) culturally appropriate and easy to use
    (2) accurate and unbiased
    (3) up to date

Further explanation of Part (A)

    (1) High quality health information
    (2) High quality health information should
    (3) High quality health information should clearly display

Principle Part (B): User Evaluation

People who use the Internet for health‑related purposes need to be able to judge the credibility of content. Thus

    Organizations and individuals offering health information, products, or services on the Internet have an obligation to
    (1) clearly and accurately
    (2) provide tools for feedback from users about the quality of content and usability of the site

3. Informed Consent, Privacy & Confidentiality

Guiding Principle: Organizations and individuals providing health information, products, or services on the Internet have an obligation to

    (A) safeguard users' privacy
    (B) obtain users' informed consent when gathering personal information

Principle Part (A): Informed Consent

To make prudent decisions about whether to provide personal information online, especially information about their health status, people need to know what information is being gathered and why. Thus

    Organizations and individuals providing health information, products, or services on the Internet have an obligation to
    (1) prominently and clearly describe
    (2) verify that users have given their voluntary informed consent to collect and use personal information in the ways described

Principle Part (B): Privacy and Confidentiality

The personal information that may be gathered by a health‑related site is often intimate and highly sensitive. People must be able to trust that any personal information they provide will be kept confidential and secure. Thus

    Organizations and individuals providing health information, products, or services on the Internet have an obligation to
    (1) prevent unauthorized access to personal information
    (2) assure users' access to their personal information
    (3) assure users' rights to review personal information and to amend it as appropriate or necessary
    (4) provide mechanisms for tracing use of personal information (for example, audit trails)

4. Best Commercial Practices

Guiding Principle: Organizations and individuals who sponsor, promote, or sell health information, products, or services on the Internet have an obligation to

    (A) disclose any information a reasonable person would believe might influence his or her decision to purchase or use products or services
    (B) be truthful and not deceptive
    (C) engage in responsible business relationships and affiliations
    (D) guarantee editorial independence
    (E) disclose the site's privacy policy and terms of use

Principle Part (A): Transparency

People who use the Internet for health‑related purposes need to be assured that commercial health or medical sites are trustworthy. They have a right to expect that material presented as scientific or educational in nature is accurate, timely, and objective, and to be assured that they will be able to choose, consent, and control when and how they actively engage in a commercial relationship. Thus

    Organizations and individuals who sponsor, promote, or sell health information, products, or services on the Internet have an obligation to
    (1) prominently, clearly, and accurately identify the business and/or site sponsors
    (2) clearly distinguish content intended to promote or sell a product, service, or organization from educational or scientific content
    (3) clearly disclose any financial or other incentives for providers who develop or present content

Principle Part (B): Truthfulness

People using the Internet for health‑related purposes need to know that products or services are described truthfully and that information is accurate and reliable. Thus

    Organizations and individuals who sponsor, promote, or sell health information, products, or services on the Internet have an obligation to

    (1) Tell the truth; tell the whole truth; make sure it is the truth.

Principle Part (C): Business Relationships & Affiliations

People who use the Internet for health‑related purposes must be confident that commercial sites select partners who adhere to the highest ethical standards. Thus

    Organizations and individuals who sponsor, promote, or sell health information, products, or services on the Internet have an obligation to
    (1) make reasonable efforts to ensure that linked and partner sites comply with applicable law and uphold the same ethical standards as the site itself
    (2) encourage users who believe that a site's commercial partners or affiliates may violate law or ethical principles to notify the site's webmaster

Principle Part (D): Editorial Independence

People who use the Internet for health‑related purposes must be able to clearly distinguish editorial content from content intended to promote or sell health products or services. Thus

    Health‑related sites supported by advertising or other commercial sponsorship have an obligation to
    (1) clearly separate advertising from editorial process and
    (2) assure that the site's editors have full authority for determining editorial content
    (3) assure that the site's editors have sole discretion to determine the type of advertising that will be accepted and full authority to reject advertising of any kind
    (4) assure that current or potential sponsors do not influence the way search results for specific information on key words or topics are displayed.

Principle Part (E): Privacy

See 3. Privacy, above.

5. Best Practices for Provision of Health Care on the Internet by Health Care Professionals

Guiding Principle: Health care professionals and organizations who provide health information, products, or services on the Internet have an obligation to

    (A) adhere to the highest standards of professional practice
    (B) help patients to understand how the Internet affects the relationship between professional and patient while adapting the highest professional standards to the evolving interactions made possible by the Internet

Principle Part (A): Professional Standards

Health care professionals have fundamental ethical obligations to patients. Thus

    Physicians, nurses, pharmacists, therapists, and all other health care professionals who provide information, products, or services pertaining to an individual's health care on the Internet have an obligation to
    (1) serve patients' best interests
    (2) protect patients' confidentiality (by adhering to the principle of privacy discussed above)
    (3) conscientiously assess patients' needs and local resources in order to recommend or provide appropriate health information or services
    (4) abide by the ethical codes governing their professions as practitioners in face‑to‑face relationships
    (5) obey the laws and regulations of the relevant jurisdiction

Principle Part (B): The Professional‑Patient Relationship

The Internet can be a powerful tool for helping to meet patients' health care needs, but it also has limitations. Thus

    Health care professionals who practice on the Internet have an obligation to
    (1) clearly and accurately describe the nature of the online relationship
    (2) clearly and accurately describe the constraints of online diagnosis and treatment recommendations (for example, that the professional cannot prescribe certain medications online)
    (3) describe the nature of information being provided (for example, whether based on expert consensus, personal professional judgment, or other sources of evidence)
    (4) help "e‑patients" understand that although not every aspect of health care requires a face‑to‑face interaction, online consultation should not take the place of an ongoing relationship with a health care provider in every situation [bc]
    (5) clearly disclose any sponsorships, financial incentives, or other information that might affect the professional's role or the services offered
    (6) clearly disclose how payment for services is to be made

Acknowledgments

The Internet Healthcare Coalition (IHC) provided the framework for the e‑Health ethics summit in Washington DC, Jan 31 ‑ Feb 2, 2000, chaired by Helga Rippen and Ahmad Risk.

The following people were participants in the summit:

Jaak Aru; Wendy Borow‑Johnson; Mark Boulding; Allan Bruckheim; Mary Cain; Lynn Cates; Richard Cleland; Stefan J. Darmoni; Mary Jo Deering; Markus Dey; Donna Doneski; Gunther Eysenbach; Ruth Faden; Giles Frydman; Bruce Grant; Bruce Grobe; Jon Grohol; James Harris; John Hoben; Tom Houston; Sam Karp; Paul Keckly; Don Kemper; Murray Kopelow; Alex Langermann; Harry A. Levy; George Lundberg; John Mack; Blackford Middleton; Sandi Mitchell; Sybil Ingram Muhammad; Thomas Murray; Beth Nash; Tim Nater; David Nickelson; John Renner; Roberto Rodrigues; Mark Samuels; Michael H. Samuelson; Michael D. Scott; Denise Silber; Bill Silberg; Loretta Skucas; S. Stuart Spector; Mike Squires; Harry Sweeney; David B. Vance; C. Peter Waegemann

Group Facilitators were Kathy Alison, Laura Guyer Miller, Maria Nagorski and Maureen Ponte.

Edited by G. Eysenbach; This is a non‑peer‑reviewed article. Submitted 18.02.00; Published 29.02.00

Please cite as:
Rippen H, Risk A
e‑Health Ethics Draft Code (Feb 18)
J Med Internet Res 2000;2(1):e2
URL: http://www.jmir.org/2000/1/e2/
doi: 10.2196/jmir.2.1.e2
PMID: 11720921

Export Metadata:
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Copyright
© Helga Rippen, Ahmad Risk. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 29.2.2000. Except where otherwise noted, articles published in the Journal of Medical Internet Research are distributed under the terms of the Creative Commons Attribution License (http://www.creativecommons.org/licenses/by/2.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited, including full bibliographic details and the URL (see "please cite as" above), and this statement is included.

Website: Wired, article, Online Therapy is not Shrinking, by Lynn Burke

The assistant clinical professor at Stanford Medical School's Department of Psychiatry and Behavioral Sciences, who maintains a private practice as a psychologist in Palo Alto, says online therapy is rife with risks.

"There's no training or research in Internet therapy, and there's no definition of what it is," he said.

He said face‑to‑face counseling, or at least telephonic therapy, is always superior to online therapy.

"With words on a screen you have such a narrow bandwidth of emotional overtones," he said. "I would always argue for telephone consultation instead of email therapy. I think there's so much more information available, you can at least tell something about (a patient's) emotional tone."

Glenn Marron, a psychologist who maintains a private practice in New York and once served as consultant to the government, agreed that the industry is moving quicker than it should.

"I think there's no question that ultimately this indeed is going to be one of the main formats for mental health," she said. "The technology is far more advanced than the infrastructure and guidelines we have."

The mental health industry has been moving toward "telehealth" –‑ the use of electronic communications and IT to support clinical care ‑‑ for years. The U.S. Department of Commerce says telehealth is employed by the mental health industry more than any other health field.

Northwestern University

September 23, 2008 | Research
Patients Stay With Phone Therapy Longer Than Office Visits

Researchers from Feinberg have found that when patients receive psychotherapy for depression over the phone, most of them continue with the therapy.
By Marla Paul
CHICAGO ‑‑ The problem with psychotherapy has long been that nearly half the patients quit going after a few sessions. Therapy can't work if patients stop coming to the therapist's office.

But a new meta‑analysis has found that when patients receive psychotherapy for depression over the phone, most of them continue with the therapy.
Researchers from Northwestern University's Feinberg School of Medicine have taken the first "snapshot" of telephone‑administered therapy studies around the country. Telephone therapy is becoming more widely used by health care providers and employee‑assistance programs.

The new study found that the average attrition rate in the telephone therapy was only 7.6 percent compared to nearly 50 percent in face‑to‑face therapy. The telephone therapy also was effective in reducing depressive symptoms with results that appear to be similar to face‑to‑face treatment.

"The problem with face‑to‑face treatment has always been very few people who can benefit from it actually receive it because of emotional and structural barriers," said David Mohr, professor of preventive medicine at the Feinberg School and lead author of the study, published in the September issue of Clinical Psychology: Science and Practice. "The telephone is a tool that allows the therapists to reach out to patients, rather than requiring that patients reach out to therapists."

Mohr said that of the patients who say they want psychotherapy, only 20 percent actually show up for a referral and half later drop out of treatment.

"One of the symptoms of depression is people lose motivation," Mohr said. "It's hard for them to do the things they are supposed to do. Showing up for appointments is one of those things."

Patients also may not have the transportation or time to travel back and forth to a therapist's office. It may be hard to squeeze an appointment into days already crammed with work, caring for kids or elderly parents or other family obligations.

Telephone therapy seems to transcend all these barriers. Mohr began using telephone‑administered therapy because he was working with patients who had multiple sclerosis who could not get to a therapist's office.

Mohr said what's needed is a definitive study with a randomly selected population of patients that directly compares therapy delivered in the traditional face‑to‑face manner to therapy delivered over the phone. He has already launched such a study in subjects who receive their primary care from Northwestern's Medical Faculty Foundation. He expects to have results in two to three years.

Mohr's study was supported by the National Institute of Mental Health.
Marla Paul is the health sciences editor. Contact her at marla‑paul@northwestern.edu

Another article:

A GoodTherapy.org News Update Presented by Daniel Brezenoff, LCSW

How many people have found solace by calling a friend on the telephone in a difficult time?

Northwestern University is reporting research indicating that telephone psychotherapy seems not only to be effective, it may be an even better treatment for depression than face to face meetings. The new study was small and more research is needed to draw any certain conclusions, but the initial data are compelling. In this study, only 7.6 percent of patients ended therapy, compared to the well‑established attrition rate of nearly half in traditional therapy.

And before you ask: The researchers found no indication that telephone therapy is any less effective in improving mood.

There may be other benefits, as well. Time management is less of an issue if client can get therapy anywhere they happen to be at appointment time.

Perhaps more controversially, clients who are depressed or anxious may be unmotivated, agoraphobic, or otherwise experience barriers to showing up for appointments. Phone therapy may help overcome these obstacles.