 |
|
 |
|
 |
 |
|
 |
 |
 |
 |
 |
 |
 |
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
Joey O’Donnell Cystic Fibrosis Center, MassGeneral Hospital for Children, Harvard Medical School, Boston, Massachusetts
 |
ABSTRACT |
|---|
 TOP ABSTRACT METHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
|---|
Methods. The search term "cystic fibrosis" was entered into a commonly used search engine (Google), and the first 100 eligible sites were reviewed. Each site was examined for adherence to the AMA Guidelines for Medical and Health Information Sites on the Internet using a series of adapted questions. There were 15 questions divided into the following main categories: 1) site structure and viewer privacy, 2) author accountability, 3) scientific citation, and 4) patient safety. The number of positives for each question was tabulated.
Results. With respect to site structure, fewer than half (45%) of the reviewed sites indicated a date of last revision. Only 11 (11%) carried an explicit privacy policy. A responsible author or group was listed in only 43 (43%) of 100 sites. Presented data regarding CF was supported by references, sources, or expert review in only 38 (38%) of 100 sites. A medical disclaimer noting that information provided does not substitute for evaluation by a health care team was evident in only 37 (37%) sites.
Conclusions. The majority of easily accessible CF informational web sites do not adhere to guidelines published by the AMA. Patients and families who use the Internet as a CF information resource should examine the web sites carefully and be familiar with the guidelines established by the AMA. Personal information is not protected, and few sites provide explicit privacy guarantees. Finally, CF care teams should inquire about Internet use by patients and families and be prepared to discuss findings from the Internet to heighten patient safety and awareness.
Key Words: Internet • guidelines • adherence • cystic fibrosis
Abbreviations: AMA, American Medical Association • CF, cystic fibrosis • CAM, complementary and alternative medicine
A change as significant as the arrival of the printing press has befallen health care informatics. The Internet has quickly become a frequently used depot of health information by patients and families. More than half of the families of children who required cardiac surgery had used the Internet as a source of medical information.1 Ninety-five percent of these parents found the information helpful.1 In a similar study of adults who attended a rheumatology clinic, 27% of all respondents had used the Internet as resource in the last 12 months, and 83% found the information useful.2
A large part of our patient population is using the Internet as a medical resource; however, patients may not be discussing their findings with either their primary care or subspecialty physician. Of Internet-using patients in the rheumatology clinic study, 31% found it easier to browse the Internet for information than to ask their doctor or nurse.2 Fewer than half of Internet-using families in 2 pediatric outpatient studies were planning to discuss Internet-obtained information with their doctor.3,4
Although patients are reluctant to discuss Internet-obtained information with their health care providers, there exists a wide variation in the quality of information found on the Internet. As an example, web-based information on depression was found to have poor overall concordance with guidelines and citing of scientific evidence.5 In contrast, using a quality scale adapted from Silberg and the HON code, Sandvik6 reported that web sites that offer information on urinary incontinence contained accurate information.
In addition to the quality of information available on the Internet, concerns exist regarding visitor privacy. Access occasionally requires the site visitor to provide personal information. Anonymity is not protected, and people who use the Internet for personal health management may be unknowingly risking personal health information.7
Because of the widespread concerns regarding accuracy of information and visitor privacy, multiple disparate guidelines have been published.8,9 In 1995, the Principles Governing Advertising in Publications of the American Medical Association (AMA) were revised to include advertising on AMA web sites. In 2000, a single document was drafted providing principles to govern the web sites supported by the AMA.10 The Guidelines for AMA Web Sites outlined 4 major fundamental principles: authorship, attribution, disclosure, and current editorial content.10 The guidelines also named the following 4 areas as needing quality standards: privacy and confidentiality, content, advertising and sponsorship, and e-commerce.10 Sites associated with the AMA must conform to these guidelines; however, industry-wide adherence to these or similar guidelines is not presently regulated. Although the AMA guidelines were used as the template for our study, recent evidence indicates that key criteria are shared between differing guidelines.8,9
Sites that provide information regarding infertility and food allergy have been examined for adherence to the core standards of the AMA guidelines.11,12 Sites that offer information about cystic fibrosis (CF) have not previously been investigated.
CF is the most common inherited lethal disease in North America with an estimated incidence of 1:2600 live births.13 Patient-specific variability coupled with the enormous impact that the diagnosis has on families has engendered a requirement for specific information to be delivered directly to the patient and the family. Many sites that offer information about CF have been developed; however, there has been no published evaluation of web site adherence to guidelines regarding health on the Internet. The purpose of this study was to provide an initial measure of adherence by CF web sites to the AMA guidelines.
|
METHODS |
|---|
|
TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
|---|
The search phrase "cystic fibrosis" was entered into a commercially available search engine (Google) on the August 25, 2002. Approximately 186 000 sites were found and ranked according to the proprietary PageRank system for ranking of web pages. Google maintains that third parties cannot purchase higher PageRank rankings. The search returned 186 000 responses, and the top 200 sites were saved to a hard-copy list. The first 100 sites that were in English, were in service, and offered information regarding CF were eligible for evaluation. Out-of-service sites, sites in another language, and links-only sites were excluded by the reviewers. To enroll 100 eligible sites, we reached number 131 on the master list. Each eligible site was then visited, and each of 15 questions was scored as a simple yes or no.
The first main category included site structure and reference visitor privacy: 1) Did the site display a revision date? 2) Did one have to register to get onto the site? 3) Was visitor privacy explicitly protected? The second main category involved authorship accountability: 4) Was an author or group named responsible for the information contained on the site? 5) Was there a way to contact the site providers? 6) Was the site sponsor or funding source clearly identified? 7) Were there links provided to established sites (eg, Cystic Fibrosis Foundation, Canadian Cystic Fibrosis Foundation, National Institutes of Health, National Institutes of Diabetes and Digestive and Kidneys Diseases)? The third main category concerned the support of the data contained in the site: 8) Was the content informational in nature (vs advertisement)? 9) Were references provided? 10) Were information sources clearly defined? 11) Has an external panel of experts reviewed the web site? 12) Was the information provided supported by any of the 3 preceding ways? The final category involved patient safety: 13) Did the site indicate that it does not replace the role of health care providers (disclaimer)? 14) Did the site contain information pertaining to complementary and alternative medicine (CAM)? 15) Did the site offer CAM goods and/or services?
We also noted the web site’s country of origin. The results were tabulated on an Excel spreadsheet (Microsoft, Redmond, WA) and expressed as sites adherent to the category of 100 eligible sites.
|
RESULTS |
|---|
|
TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
|---|
|
|
|
|
|
DISCUSSION |
|---|
|
TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
|---|
CF is presently an incurable genetic disease with a tremendous impact on the emotional, physical, and psychological state of those affected. Variation in patient course and disease severity has engendered a need for vast amounts of knowledge to be delivered directly to the patient and the family. Although many sites that provide information on CF have been developed, no published guidelines regarding these sites presently exist. In this study, we reviewed 100 sites and measured adherence to the published AMA guidelines for online health information.
One exciting aspect of Internet-based health information is the ability to update and reference continually as new data are introduced. That only 45 of 100 surveyed sites included a date of last revision was surprising. Viewers are at risk of obtaining outdated and possibly inaccurate information. Sites that offer health information should display a revision date to enhance patient safety. Patient privacy is of paramount importance for both the authors of the AMA guidelines and Internet-using patients.10,15 A recent study found that 30% of Internet health sites did not have an explicit privacy policy.16 In our survey, only 12% of CF sites provided a privacy clause. In addition, we found that the majority of sites that absolutely require registration do not provide a privacy guarantee. Personal information about afflicted patients can be sold to interested third parties without previous approval. Therefore, it is incumbent on health care providers to ensure that patients understand that personal information on the Internet is poorly protected and confidentiality policies do not always exist.
Accountable authorship is also a common concern. We found that most Internet sites simply neglect to list authors. The untraceable nature of many sites provides an avenue for circulation of erroneous information. Information-seeking patients must be aware that authorship accountability is a cornerstone of disseminated medical information. Most web sites do provide a means of contact with the site provider, but, again, viewers should be aware of privacy concerns regarding e-mails and other forms of electronic communication.
Our review of web sites that present data regarding CF was not intended to rate quality of information but rather to evaluate the support for presented data regardless of content. We found that almost two thirds of easily accessible web sites do not provide references or sources for site information. Few sites are peer reviewed. Proper presentation of references and identification of source material is a foundation for evidence-based medicine, and site viewers should be taught how to look for proper scientific referencing. This would allow our patients and their families to better evaluate information presented by these sites.
Health care on the Internet does not replace the care offered by a trained and qualified multidisciplinary CF care team. Few sites indicate this fact to patients. Therefore, health care professionals should inquire about the extent to which their patients use and follow Internet-obtained advice. The Internet has also introduced e-commerce in that goods and services are being provided over the Internet. A small number of sites present information on CAM specifically for patients with CF. A few offer CAM goods and/or services. It is important for health care providers to be knowledgeable about CAM goods and services being used by their patient population, as they are accessible via the Internet.
|
CONCLUSIONS |
|---|
|
TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
|---|
First, we submit that CF health care providers should inquire about Internet usage by patients and families and encourage discussion regarding Internet-based material, goods, and services. Second, patients and families should be counseled to examine web sites carefully and be familiar with the guidelines established by the AMA. Third, web users should be cautious when entering personal information into sites and be aware that even with explicit privacy guarantees in place, electronic information is difficult to protect. Finally, although the Internet provides patients and families who are fighting CF an easily accessible information resource, regulations regarding privacy, authorship, and accuracy of data would aid in heightening patient safety.
|
ACKNOWLEDGMENTS |
|---|
We are indebted to Dr Allen Lapey for the inestimable amount of teaching and support that he has given patients, families, nurses, colleagues, fellows, residents, and other health care professionals during his 32 years as Cystic Fibrosis Center Director at Massachusetts General Hospital. This work is dedicated to our patients and their families.
|
FOOTNOTES |
|---|
Reprint requests to (K.E.H.) Joey O’Donnell Cystic Fibrosis Center, MassGeneral Hospital for Children, ACC 712, 15 Parkman St, Boston, MA 02114. E-mail: khaver{at}partners.org
Dr Anselmo’s current affiliation is Division of Respiratory Medicine, Montréal Children’s Hospital, McGill University, Montréal, Québec, Canada.
|
REFERENCES |
|---|
|
TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
|---|
This article has been cited by other articles:
 |
|
 |
|
  E. Marziali, J. M. D. Serafini, and L. McCleary A Systematic Review of Practice Standards and Research Ethics in Technology-Based Home Health Care Intervention Programs for Older Adults J Aging Health, December 1, 2005; 17(6): 679 - 696. [Abstract] [PDF]
|
|
|
|
 |
|
 How Good Is Medical Info on the Internet? Journal Watch Pediatrics and Adolescent Medicine, September 13, 2004; 2004(913): 2 - 2. [Full Text]
|
|
| ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
 |
||
|
||
Home | My Pediatrics | Journal Information | Current Issue | Past Issues | Subscriptions & Services | Contact Us Click here for faster international access © 2004 American Academy of Pediatrics. All rights reserved. |
||
|
||
