Thanks to the Internet, patients have access to a wealth of information about their diseases. We offer some recommendations and a cautionary note.

Under the biomedical model of care, patients were expected to go to a physician, be told what was wrong, and then obediently follow the treatment plan outlined by that physician. In the mid-1970s, the empowerment model emerged as a process that encouraged patients to assert their rights and actively participate in decisions affecting their health.1 The empowerment model of patient care assumes that because it is the patients themselves who experience the consequences of having and treating their medical condition, they should also have the right to be the primary decision makers. To make informed decisions, patients who have COPD should be given appropriate and sufficient information about their condition, treatment options, and the likely outcomes with and without treatment.2 They should be given the opportunity to communicate their understanding and values and beliefs and be encouraged to ask questions, raise concerns, and express their feelings about what is happening to them.3 Patients are “seen as the experts on their illness and health care professionals as experts on the medical conditions and management resources.”2 Consequently, respiratory therapists should play a key role in educating and preparing patients to make informed decisions about their care.

Rationale for Empowering Patients

Studies have shown that education improves self-management4 and adherence to therapy5 in patients with COPD. Multiple studies have confirmed that patients who are active partners in the health care process have better outcomes than those who are not involved.6-8 Several recent national and international initiatives have called for increased patient involvement. The American Hospital Association Patient Care Partnership tells patients that they should expect to be involved in their care and treatment decisions.9 The American Recovery and Reinvestment Act (Stimulus Act) signed by President Obama in February 2009 allocated $2 billion to improve the quality and expand the scope of health information technology in the United States; a central goal is to transfer all Americans’ health care records to electronic format by the year 2014 and to allow patients easy access to their information.10 The COPD Patients’ Bill of Rights lists the “right for information and education about COPD.” Specifically, it states that patients should be “taught what state-of-the-art care for COPD involves.”11 In addition, the explosive growth of the Internet has “increased consumer demand for health information and fuelled the expansion of personal advocacy and disease self-management.”3

The Internet as a Source of Health Information

People with chronic diseases such as COPD have extensive education needs. Self-management necessitates education regarding techniques and interventions that might control symptoms or stop the advance of COPD.12 Patients frequently turn to the Internet for this information. According to a 2009 Pew study,13 61% of all adults in the United States have looked online for information about health or medical issues, and many of them say that the information they found online affected a decision about how to treat their illness or led them to get a second opinion; 42% of all patients and 60% of e-patients (a term sometimes used to describe health care consumers who use the Internet to gather information about medical conditions) say they or someone they know has been helped by following medical advice or health information found on the Internet. Physicians also report high numbers of patients bringing Internet information to a visit.14

Some words of caution, however: In the March 2010 issue of the New England Journal of Medicine, Harvard physicians Hartzband and Groopman15 use strong words and valid arguments for encouraging patients to be cautious when using the Internet to search for medical information. They state, “Information and knowledge do not equal wisdom, and it is too easy for nonexperts to take at face value statements made confidently by [a] voice of authority. Physicians are in the best position to weigh information and advise patients. … If anything, the wealth of information on the Internet will make such expertise and experience more essential. The doctor, in our view, will never be optional.” (To see a list of advantages and disadvantages of patient Internet use, see the table below.—ed)

Internet Resources for Empowering Patients with COPD

How might one determine what topics are of interest to COPD patients? In 2006, Carlson et al12 conducted a study to assess the educational needs of patients with COPD. Forty topics related to COPD education were listed. Examples include side effects of medications, how to travel with oxygen, and how to ask one’s friends and family for help (the list of topics is an excellent resource for anyone involved in selecting and/or designing education programs for COPD patients). The researchers noted that 83 patients (72% response rate) completed and returned the survey; 35 of the 40 topics received a score that indicated patients were very interested or extremely interested in learning about those topics. The top five topics of interest to patients were (in order): signs they need emergency help, how to avoid lung infections, how to prevent COPD from becoming worse, how to maintain their ability to do activities that they enjoy, and what to do if symptoms get worse. The educational topics listed in this study would be an excellent way to focus Internet searches and/or to categorize Web sites relevant to COPD.

Additionally, I offer the following free Web sites for your consideration:

Internet Training Web Sites

[removed]Medical Library Association’s User’s Guide to Finding and Evaluating Information on the Web[/removed]. The site provides guidelines on how to find the highest quality health information on the Web as well as examples of the best health Web sites. Included in this guide are general starting points as well as specific sites for cancer, diabetes, and heart disease.

Toolkit for Trainers. This is a resource developed by the National Institute on Aging containing free, easy-to-use training materials to help older adults find reliable, up-to-date online health information on their own. The training features two Web sites: NIHseniorhealth.gov and MedlinePlus.gov. Trainers can use the toolkit with beginning and intermediate students of the Web.

Health on the Net Foundation. HON’s mission is to guide Internet users to reliable, understandable, accessible, and trustworthy sources of medical and health information.

COPD-Related Web Sites

Global Initiative for Chronic Obstructive Lung Disease. GOLD disseminates scientific reports and guidelines and provides education and management tools. Teach patients to access the guidelines with outlines of recommended diagnosis and treatment for COPD. Even though these guidelines are for health professionals, patients are typically able to interpret the information.

National Heart, Lung, and Blood Institute. The site offers information for professionals and the general public about heart and lung disease, including information specific to COPD. A nice feature is that the patient can select text size.

American Lung Association . This is information specific to COPD and evidence-based clinical information; there are also links to Better Breathers clubs, and patients can register for free e-news.

American Thoracic Society . This Web site has a patient section. The American Thoracic Society aims to provide useful information and Web links to patients and others who have an interest in lung, sleep, or critical care problems, treatment, and prevention. The ATS covers various topics for children and adults, and new topics and updates are added regularly.

Healthfinder®. This is a gateway consumer health information Web site whose goal is “to improve consumer access to selected health information from government agencies, their many partner organizations, and other reliable sources that serve the public interest.” Menu lists on its home page provide links to online journals, medical dictionaries, minority health, and prevention and self-care. The developer and sponsor of this site is the Office of Disease Prevention and Health Promotion, Department of Health and Human Services. Access to resources on the site is also available in Spanish.

MEDLINEplus. This is a consumer-oriented Web site established by the National Library of Medicine, the world’s largest biomedical library and creator of the MEDLINE database. An alphabetical list of health topics consists of more than 300 specific diseases, conditions, and wellness issues. Each health topic page contains links to authoritative information on that subject, as well as an optional link to a preformulated MEDLINE search that provides journal article citations on the subject. Additional resources include physician and hospital directories, several online medical dictionaries, and consumer drug information available by generic or brand name.

Clinical Trials. This site directs patients and doctors to clinical trials anywhere.

AirNow. This site contains local and national air quality conditions and forecasts.

Your Lung Health . This is a Web site for patients with pulmonary disease sponsored by the American Association for Respiratory Care.

COPD News of the Day. I typically do not recommend “personal” Web sites, but this is one of the most extensive and helpful Web sites on COPD that I have found.

Hospital Compare. This Web site helps find information on how well hospitals care for patients with certain medical conditions or surgical procedures, and results from a survey of patients about the quality of care they received during a recent hospital stay. This information will help users compare the quality of care hospitals provide. Patients should talk to their doctors about this information to help them and their family and friends make the best hospital care decisions. Hospital Compare was created through the efforts of the Centers for Medicare and Medicaid Services (CMS), the Department of Health and Human Services, and other members of the Hospital Quality Alliance: Improving Care Through Information (HQA). The information on this Web site comes from hospitals that have agreed to submit quality information for Hospital Compare to make public.

Conclusion

Patients with COPD are assuming greater responsibility and involvement in their care. Though they increasingly use the Internet to access health information, 80% of all adults still report turning to health professionals when they need information or assistance in dealing with a health or medical issue.13 As respiratory therapists, we can teach patients how to use the Internet in ways that will allow them to become informed and active participants in their care while minimizing any disadvantages. We should teach patients how to find and evaluate information on the Internet, check the accuracy of health claims, and determine if a site is reputable.


Jodie Lester, RRT, is associate professor, respiratory care, Boise State University. For further information, contact [email protected]

Table. Advantages and Disadvantages of Patient Internet Use. Anderson and Klemm16 and Xie17 reviewed several studies on patient Internet use and identified the following advantages and disadvantages

Advantages

Disadvantages

  • The information is generally current and comprehensive.
  • Information is available in a variety of learning and language options.
  • Because they have access to information, patients can be empowered to play a more substantial role in health care decisions.
  • Information can be accessed when it is convenient for the patient and learning can be self-paced.
  • Patients can create social networks and contact health care providers or insurance companies.
  • Information accessed via the Internet crosses international boundaries.
  • Patients can access a range of medical opinions.
  • Multiple Web sites provide recommended questions that patients can ask their provider.
  • Patients can come prepared to actively participate in health care decisions.
  • Patients can use the Internet to confirm and expand on information they received without bothering their health care provider.
  • Patients can reach out to others who have the same disease to find treatments that have worked and those that have not.
  • Other patients can be a source of practical and experiential advice.
  • Physicians might actually learn from their patients.
  • Patients experience possible information overload.
  • Low income and less educated patients may not have access to a computer and may not be able to access information on the Internet.
  • Most sites require at least high school proficiency in reading.
  • Patients could become frustrated due to a lack of the required technical knowledge and skills.
  • Quackery-information found online may be dangerous to consumers; Web site might try to sell something.
  • Information that is accessed might be inaccurate-patients may not be able to discriminate between sites that try to provide unbiased, well researched information and those that do not.
  • Personal information could be collected without the patient’s knowledge when they visit some Web sites.
  • Some users might be reluctant to use technology.
  • Patients and family may be attracted to the visual appearance of a Web site and not consider whether the information found there is accurate or evidence based.
  • The ideal of being an active and involved participant in care may be taken to the extreme with patients becoming adversarial.

References

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  11. COPD Patients’ Global Bill of Rights. Available at: www.internationalcopd.org/WCDMaterials/Global_Bill_of_Rights.aspx . Accessed July 30, 1010.
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  13. Pew Research Center Publications. The Shared Search for Health Information on the Internet. Available at:pewresearch.org/pubs/1248/Americans-look-online-for-health-information . Accessed May 1, 2010.
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