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Do they really understand your authorization form?
Privacy notices don’t set the standard
In cities all over the country, Health Insurance Portability and Accountability Act (HIPAA) privacy notices are being shoved into the hands of patients. These notices, presumably explain clearly what HIPAA is and the rights that John and Jane Q. Public now have.
They run the gamut, from eight-page tomes that detail the law verbatim to two-page summaries that hit the high points and then ask the patient to sign a form acknowledging that these new rights were explained.
Regardless of the length, the forms seem to have one thing in common: They’re difficult to understand.
One readability expert found that privacy notices are written at levels most likely to go right over the general public’s head. So if your authorization form is modeled after a privacy notice, you may want to think about revising it.
Mark Hochhauser, PhD, an independent readability consultant in Golden Valley, MN, analyzed 31 actual HIPAA privacy notices and discovered that most were written at college levels.
According to recent census data, 85% of adults have only a high school degree. He cites research that asserts that many people read three to five grades lower than their highest degree earned, which would mean high school graduates typically read at a seventh- to ninth-grade level. The notices Hochhauser analyzed were written at a second- to fourth-year college level.
Even those with college degrees may be hard pressed to understand some of the notices floating around. "That HIPAA privacy notices were written at a college reading level means only that they’ll be harder for most people to read and understand," he explains.
"It does not mean that anyone with a college degree can understand them and anyone without a college degree cannot. You can major in anything from art to zoology in college, and not everyone with a college degree comes out with the same vocabulary or way of thinking. My PhD in psychology is of little help if I’m trying to understand a document full of legal or medical jargon. I just don’t have the vocabulary for those terms. And why should I?"
The biggest problem seemed to be sentence length and word choice. "The sentences are too long and have too many long and uncommon words," Hochhauser asserts.
The average length of sentences for the notices analyzed was 25.2 words per sentence. One example from Hochhauser’s research contained 72 words:
"Your health information may be used for research purposes, but only if (1) the privacy aspects of the research have been reviewed and approved by a special Privacy Board or Institutional Review Board and the Board can legally waive patients’ authorization otherwise required by the Privacy Regulations; (2) the research is collecting information for a research proposal; (3) the research occurs after your death; or (4) if you give written authorization for the use or disclosure."
Research suggests that sentences that are easily understood contain 15-20 words per sentence.
In addition to length, the example contained words that are not commonly used (e.g., authorization, disclosure) and the names of two entities with which the public is likely not to be familiar (privacy board and institutional review board). Hochhauser used The Educator’s Word Frequency Guide to create a list of common and uncommon words.
"Privacy notices are supposed to be written in plain language, but there are no penalties if the notices are written in legal jargon," he says.
"I’ve seen organizations send out press releases touting that they are HIPAA-compliant,’ at least with respect to how they handle personal health information, even though their privacy notices are almost incomprehensible. So they claim that they’re compliant even when they are noncompliant with a major part of HIPAA. How can they be in compliance if their members can’t understand their privacy notices?" Hochhauser asks.
Keep It Simple
Here are a few tips to help you draft a readable and understandable privacy notice or authorization form:
Source: Mark Hochhauser, PhD, Golden Valley, MN.
Source: Mark Hochhauser, PhD, Golden Valley, MN.
The rest of the story
Though sentence structure and word choice are important, it may not tell the whole story. How a document looks could play an important part in its readability, he says.
"Document design is a crucial part of readability," he says. "Take a look at a brief summary’ of a direct-to-consumer drug ad in magazines or newspapers. Very often, it’s a dense block of text in tiny print. It wouldn’t matter if it were written at a sixth-grade reading level, the design makes it illegible and too hard to read.
"Document designers will tell you that the amount of white space in margins and between paragraphs, the size of the font, the number of fonts, the use of illustrations, highlighted text or text in boxes, etc., can make a big difference in a document’s appeal to the reader. Most HIPAA privacy notices are not designed, just typed," says Hochhauser.
"Someone told me that one health care organization got their HIPAA notice down to about three pages by simply reducing the font size. Nothing like making readers squint to read about their privacy rights," he says.
Given that privacy notices should contain nearly 30 elements — everything from who will see protected health information (PHI) to instructions on revoking an authorization, a layered approach may be most effective.
"In 2001, financial privacy notices were mandated. They contained nine elements and were heavily criticized as being legalistic and not user-friendly," says Lisa Sotto, JD, a privacy regulatory specialist in the New York City office of Hunton & Williams.
"HIPAA notices must contain even more elements. In response to consumer dissatisfaction with the readability of many privacy notice, we came up with the concept of layered notices," she explains.
The layered approach includes a brief overview — termed highlights by Hunton & Williams — accompanied by a longer, more detailed explanation of patient rights under HIPAA.
Hochhauser also supports the layered approach and designed a one-page summary that could be accompanied by the longer notice.
"Less information equals more understanding," he says.
(Editor’s note: We’ve included a sample HIPAA authorization form. It is written on a seventh-grade level.)