The Internet: What are our patients exposed to when considering breast reconstruction following mastectomy?

BACKGROUND: The exponential increase in internet use has transformed the healthcare provider-patient relationship. There is a need to guide patients. This study analyses the information available, clinicians approach and patients' experiences. METHODS: An internet search, "breast reconstruction after mastectomy" was performed on Google and Bing search engines. The first 100 sites on each search were analysed. Target audience, provider and readability were assessed. Modified Health on the Net criterion was used to assess quality. Additionally clinicians and patients were surveyed about their experiences. RESULTS: Private companies dominated, accounting for 67% of sites, the majority advertised private healthcare groups. Of "information pages", 16% were government sites and 9% were from professional bodies but 28% were private. Blogs had high rates of surreptitious advertising. Patients wanted guidance on which sites to use. Endorsed sites were commonly recommended and used despite only accounting for 13 of the 100 sites. CONCLUSION: The internet is a powerful tool for disseminating information. There is a wide variety of information presented on breast reconstruction following mastectomy from a range of providers with different interests. Patients should not only be provided with a list of internet resources but also counselled on the types of information they may encounter.

A cross-section of readability of Health Information Portability and Accountability Act authorizations required with health care research.

The Health Information Portability and Accountability Act (HIPAA) regulations require that agencies provide authorizations that can be read and understood. Agencies are responsible to comply with this regulation. It is estimated that half of Americans read at an eighth-grade reading level. All institutional review boards (IRBs) listed on the website of the U.S. Department of Health and Human Services were contacted by investigators in this study. Fifty-one IRBs returned HIPAA templates on which readability tests could be completed. Three readability tests were used on all templates, including the Flesch Reading Ease formula, the Dale-Chall formula, and the Fry formula. For the returned templates, the mean of the Dale-Chall readability formula gave a ninth-grade level; the mean scores for the Flesch Reading Ease and Fry formulas were at a high-school reading level or above. The readability scores ranged from sixth-grade to college graduate. This study demonstrates that HIPAA authorization forms are written at too high a level for most of the population. Based on the results of this study and other similar studies, it can be concluded that consumers/patients are currently being asked to read important health-related documents that may be beyond their reading level.