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HIPAA Notice of Privacy Practices Used in U.S. Dental Schools: Factors Related to Readability or Lack Thereof

Key words: Health Insurance Portability and Accountability Act, dental clinics, readability, social capital, ecologic study

Submitted for publication 06/05/06; accepted 11/14/06

	Abstract

Top Abstract Materials, methods, and design Results Discussion Conclusions Appendix a Appendix b References

 
The Health Insurance Portability and Accountability Act of 1996 requires Notices of Privacy Practices (NPP) in plain (clear, concise, and easily understood) language. The objectives of this study were to test the readability of U.S. dental school NPPs; examine factors relating to readability; and develop a plain language NPP supplement. Readability statistics were Flesch Reading Ease (FRE) and Flesch-Kincaid Grade Level (FKGL). Social capital measures of potential resources available to people in a civil society (e.g., perceived trust, perceived reciprocity, and per capita voluntary organization membership) along with lawyers per capita for each state were examined for potential relationships with readability levels. One-sample t-tests assessed plain language (FRE=60, FKGL=8), and analyses of variance compared groups. Spearman rank correlations (r_s) compared social capital to readability. A plain language NPP supplement was developed. All fifty-six U.S. dental school NPPs were obtained (100 percent response). Forty-eight of fifty-six schools (86 percent) had website NPPs. FRE and FKGL were significantly more complex than plain language, overall (both p<0.0001, 95% CIs: FRE=37.6, 40.5; FKGL=11.2, 11.8) and by region (all p<0.014). Readability did not differ by region. Social capital measures moderately related to readability (0.18 |r_s| 0.39) with reciprocity being most related (FRE r_s=0.36, FKGL r_s=–0.39). U.S. dental school NPPs are more complex than "plain language."

Healthy People 2010 defines functional health literacy as the degree to which people have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.² Health literacy has been found to be a better indicator of a person’s health status than age, income, ethnicity, employment status, and even education level.³ Health communications also include informed consent and conveying provider practices and patient rights. In a recent report on nursing home NPPs, the authors stated that health care providers/institutions have the duty to provide the highest level of care possible; included in this care is providing understandable information so patients can make proper health decisions.³ Studies of treatment informed consent documents and informational brochures have previously reported patients’ general lack of understanding of dental treatment options and risks, due in part to difficult to read materials;^4–8 orthodontic brochures in the United States, for example, were less readable than those in the United Kingdom.⁵ Readability and comprehension problems are exacerbated in public or dental school clinics, as well as in patients with lower literacy levels and limited English proficiency.^6–8 Most NPPs in the U.S. nursing home study were difficult to understand as determined by the Flesch Reading Ease (FRE) scale and the Flesch-Kincaid Grade Level score.⁹ In a similar study of NPPs in U.S. hospitals, NPPs were found to be written at levels far above American adults’ comprehension levels.¹⁰ In that study, hospital NPP readability levels were compared to local low English proficiency rates and low literacy rates; low English proficiency rates, but not low literacy rates, were related to readability levels.

From the National Adult Literacy Survey in 1992, the National Institute for Literacy reported that 23 percent or forty-four million U.S. adults had inadequate literacy skills.¹¹ Although Americans attain an average grade level of twelfth grade or above, the average U.S. adult reading level is ninth grade or below.^1,12 Low literacy skills compounded with the difficult language utilized in NPPs further impede appropriate health care delivery. Each year, additional expenditures in health care resulting from low literacy could be saved if the issue were tackled aggressively.¹ In a clinical study, inadequate health literacy has been correlated with high viral load and low CD4 T-cell count in HIV-AIDS patients.¹³ In another study, patients were twice as likely to be hospitalized for various medical problems if they had inadequate literacy compared to their counterparts with adequate literacy levels.¹⁴ In a study by faculty at the University of California, San Francisco (UCSF), diabetic patients with poor health literacy had inadequate control of their blood glucose levels and an increased retinopathy incidence.¹⁵ Thus, health literacy is related to many important health conditions, and complex NPPs may be an impediment to optimal health, including oral health, for all.

Social capital is defined, for example, by Kawachi et al., as potential resources available to people in a civil society or those features of social organization that facilitate cooperation for mutual benefit in society.¹⁶ In another study by Kawachi et al., the authors reported that low social capital has been linked to increased total mortality as well as death due to malignant neoplasia, coronary heart disease, and infant mortality.¹⁷ Beginning with the seminal work of Durkheim in 1897 linking low social capital with increased suicide rates and the Roseto study in the 1960s–1990s showing half the heart attack rate in a town with more social cohesion and stronger social networks than its neighboring towns with less social cohesion and social networks, social capital has been shown in many instances to relate to health.¹⁸ Social capital is often specified as several constructs: trust, social networks, and reciprocity. Social capital measures often include feeling neighbors will help (perceived reciprocity), feeling that people will basically try to get away with what they can (perceived interpersonal mistrust), participation in civic and recreational groups (per capita voluntary organization membership), and a more litigious culture (lawyers per capita). Lower social capital might relate to more complex (less readable) NPPs as communities with less group trust would feel more frequently compelled to take a more legalistic, defensive position regarding NPP content. Social capital measures may correspond to NPP complexity: communities with more social capital may find less need for complex legalistic NPPs.

The objectives of this study were to test the readability level of U.S. dental schools’ NPPs; examine factors such as region and social capital that are possibly related to readability levels; and develop a plain English NPP supplement. The hypotheses were that most U.S. dental schools’ NPPs would be deemed difficult to read using standard readability scales and at a higher reading level than plain English as required by HIPAA; that West Coast and Northeastern U.S. dental schools would have better readability than those in other regions due to more familiarity with low literacy populations; and that readability would be associated with social capital measures.

	Materials, Methods, and Design

Top Abstract Materials, methods, and design Results Discussion Conclusions Appendix a Appendix b References

 
The UCSF institutional review board (Committee for Human Research) staff confirmed that analysis of publicly available materials did not require consent. Most Notices of Privacy Practices (NPPs) were downloaded from dental school websites. Schools that did not have NPPs available on their websites were contacted to obtain their NPPs via electronic mail or fax. NPPs sent via fax were scanned and imported into MS Word (2003 edition) using optical character recognition (OCR) software (HP Director). Scanning hard copies eliminated the need to manually type hard copies into documents. OCR scanned documents were double-checked for accuracy, since original OCR scans are not 100 percent accurate. Electronic forms (website NPPs, electronic NPPs) were copied and pasted into MS Word. All documents were prepared before scoring, following recommended guidelines.¹⁹ Preparation included hyphen removal, numerals changed into words, abbreviation punctuation removal, and bullet and numbering punctuation removal.

Readability statistics were computed using the Flesch Reading Ease (FRE) index and Flesch-Kincaid Grade Level (FKGL) score. The FRE index is on a scale of zero to one hundred: zero being most difficult and one hundred being easiest to comprehend, with plain English falling in the range of sixty to seventy.²⁰ FRE scores were calculated by the formula:

where ASL is the average sentence length (number of words divided by number of sentences) and ASW is the average number of syllables per word (number of syllables divided by number of words).²⁰ The Flesch-Kincaid Grade Level score is based on U.S. school grade levels (ten=tenth grade) calculated by the formula:

where ASL and ASW are defined as above.^1,20 FRE and FKGL were generated using the built-in readability statistics in the Tools—Options’ Spelling and Grammar tab in MS Word. Each NPP was scored using this function. Screen captures of the readability statistics were saved for documentation and to ensure validity.

Dental schools’ regions were classified as the American Dental Association does for its reports on regional variation among dentists²¹ (see Appendix A). State-level social capital data were obtained from Dr. Kawachi. The National Opinion Research Center’s General Social Survey (GSS) was assessed by Kawachi et al. (data from 1986 to 1990) on aggregate data at the state level for three social capital factors.¹⁶ These factors included levels of trust: the percentage of respondents who answered "Most people can be trusted" to the question "Generally speaking, would you say most people can be trusted?"; levels of reciprocity as the percentage responding "Most people are helpful" to the question "Would you say that most of the time people try to be helpful, or are they mostly looking out for themselves?"; and per capita membership in voluntary organizations as the percentage who indicated membership in associations such as church groups, sports groups, political organizations, etc.¹⁶ In addition, the number of lawyers per 100,000 population was obtained for each state from U.S. Census data as a measure of community litigiousness.²²

Statistical analyses were one-sample t-tests to compare readability to plain language standards (FRE=60, FKGL=8). Unpaired two-sample t-tests were performed to compare schools from the Pacific/Mid-Atlantic/New England regions with schools from all other regions. Analyses of variance (ANOVAs) compared readability scores among all regions. Spearman rank correlation (r_s) examined associations between social capital and readability (state-level means).

With recommendations from the National Center for the Study of Adult Learning and Literacy,²³ a low literacy supplement (not a replacement) for dental school NPPs was developed. Difficult words were changed to plain words; long sentences shortened or reformatted into bulleted form; certain definitions and redundant statements deleted; and passive sentences changed to active sentences. This document appears in Appendix B.

	Results

Top Abstract Materials, methods, and design Results Discussion Conclusions Appendix a Appendix b References

 
NPPs from all fifty-six U.S. dental schools were obtained (100 percent response rate). At 86 percent of the schools (forty-eight of fifty-six), NPPs were available on their official websites. However, the University of Puerto Rico’s NPP was in Spanish, which has different linguistic characteristics than English. Thus, subsequent analyses used fifty-five dental schools.

FRE and FKGL of all schools were found to be significantly more complex than plain language defined as sixty on FRE and eighth-grade level on FKGL (one-sample t-tests, both p<0.0001, 95% CIs: FRE=37.6, 40.5; FKGL=11.2, 11.8). In all regions, statistical significance was found in both readability measures (Table 1 and Figure 1). Comparison of the Pacific and Northeast regions with all other regions found no statistical significance for readability (FRE: p=0.64; FKGL: p=0.87), although three of the six schools with the best FRE scores and two of the five schools with the best FKGL scores were from the Pacific and Northeast regions (Figures 2 and 3). Only six of the fifty-five NPPs scored at or below the tenth grade (Figure 3). ANOVA tests to compute whether any of the nine U.S. regions differ showed no statistical significance (FRE: F=0.93, 8 d.f., p=0.50; FKGL: F=1.12, 8 d.f., p=0.36).

View larger version (19K): [in this window] [in a new window]   Figure 1. NPP readability (Flesch Reading Ease and Flesch Kincaid Grade Level) of U.S. dental schools (means and 95% confidence intervals)

View larger version (11K): [in this window] [in a new window]   Figure 2. FRE of fifty-five U.S. dental schools: Pacific and Northeastern regions have three of six best scores (arrow indicates easiest readability)

View larger version (13K): [in this window] [in a new window]   Figure 3. FKGL of fifty-five U.S. dental schools: Pacific and Northeast regions have two of five best scores (arrow indicates lowest grade level)

	Discussion

Top Abstract Materials, methods, and design Results Discussion Conclusions Appendix a Appendix b References

 
A supplemental NPP (see Appendix B) was produced for dental schools following the suggestions of HIPAA for plain language as well as recommendations of the Harvard School of Public Health’s Health Literacy Project.²³ We recommend the low literacy supplement always be given along with the already approved NPP to increase understanding of all patients, especially those with low literacy. Health care providers and staff are not always proficient at accurately assessing readability levels, so providing this information to everyone will reduce assessment errors as well as any stigma of being treated differently.

Examining NPPs revealed remarkable similarities among them, as many schools purchased the HIPAA Notice of Privacy Practices Brochure from the American Dental Association and then personalized the material according to individual school needs. Perhaps the ADA should consider supplying an NPP supplement in plain language as part of its HIPAA brochures. It takes only one person in an organization to become sensitized to HIPAA readability issues to become an advocate of better readability. This may explain why certain schools from a variety of regions had better readability than the rest, rather than sweeping regional differences.

HIPAA proves to be a difficult challenge for health care providers because not only is it a daunting task to read the entire eight-part, 369-page HIPAA law, but also because procedures utilized in protecting the rights and information of patients may seem to inhibit the care given. Nevertheless, entities under HIPAA policy must abide by its regulations and need to actively provide this information in a more understandable manner. Some scholars suggest revising HIPAA to combat readability issues that can have unforeseen impacts on health. Recently, the most egregious example of lack of HIPAA NPP readability was reported: an elderly woman attempted suicide due to misunderstanding a HIPAA notice from her insurance company. The seventy-nine-year-old patient with no prior psychiatric history suffered a self-inflicted gunshot wound after she read the NPP since she believed that she had skin cancer and misinterpreted the NPP to be a discontinuation of coverage notice from her health insurance company.²⁴ While we do not believe there will be a rash of such instances, we do believe this illustrates, in the extreme, the unintended ill effects of overly legalistic and complex communications, which may be silently affecting provider-patient relationships daily.

The MS Word readability function for FKGL has an upper limit of twelfth grade. Other studies conclude this underestimates the actual mean, which could be even higher than estimated (µ=11.5).^1,4 The two readability measures, FRE and FKGL, are inversely proportional to each other (i.e., low FRE score correlates to a high FKGL score); as such, thirty-nine of the fifty-five NPPs were recorded at the twelfth-grade reading level, which had corresponding FRE scores that ranged greatly (e.g., FRE=29.1 to FRE=49.9 had FKGL=12). Thus, many NPPs were written above the twelfth-grade (i.e., at college) level.^1,4 This study took the ecologic approach, measuring at the state level for the social capital and lawyer density variables. Causal relationship cannot be proven until further studies isolating for possible confounding factors have been performed.¹⁷ Although state-level social capital was measured from the 1986–1990 GSS and the NPPs were from 2005, state-level social capital probably changes more slowly over time than neighborhood-level measures. Furthermore, many other readability scales and indices exist including elements such as font size, amount of white space, spacing between words, etc. that could be utilized; per related studies, we used the FRE and FKGL indices because they are the most widely available and easily used scales.^1,25

	Conclusions

Top Abstract Materials, methods, and design Results Discussion Conclusions Appendix a Appendix b References

 
Not surprisingly, most U.S. dental schools’ NPPs are quite difficult to read and at a much higher reading level than plain language. Dental schools from the Pacific and Northeast regions do not have better readability than schools in other U.S. regions. Social capital as assessed was moderately related to NPP readability in terms of helpfulness or reciprocity. Dental schools’ NPPs are at higher reading levels (eleventh-grade level on FKGL) than the eight-grade level recommended by the UCSF Committee on Human Research.

	APPENDIX A

Top Abstract Materials, methods, and design Results Discussion Conclusions Appendix a Appendix b References

 

U.S. Region States Included Pacific CA, OR, WA, AK, HI Mountain ID, NV, AZ, UT, MT, WY, CO, NM West North Central ND, SD, NE, KS, MN, IA, MO West South Central TX, OK, AR, LA East North Central WI, MI, IL, IN, OH East South Central KY, TN, MS, AL Middle Atlantic NY, PA, NJ South Atlantic DE, MD, DC, WV, VA, NC, SC, GA, FL New England CT, RI, MA, VT, NH, ME

	APPENDIX B

Top Abstract Materials, methods, and design Results Discussion Conclusions Appendix a Appendix b References

 
NOTICE OF PRIVACY PRACTICES SUPPLEMENT

XXX School of Dentistry

Effective Date: April 14, 2003

This notice describes how we may use and share your personal health care information.

It also tells how you can get this information.

Please read it carefully.

1. Who will follow this notice?
   • Medical centers.
     
   • Medical groups.
     
   • Clinics and doctors’ offices.
     
   • Schools of Dentistry, Medicine, Nursing, Pharmacy.
     
   • Our other health professional schools.
     
   • Student health services.
     
   • Employee health units.
     
   • Administrative and operational units of our health care components.
     
   
   
2. The law requires us to...
   • Give you this Notice describing:
     • our legal duties.
       
     • and privacy practices about your health care information.
       
     
     
   • Follow the terms of the current Notice.
     
   • Make sure that we protect your health care information.
     
   
   
3. How we may use and disclose your health care information...
   • For treatment and payment.
     
   • For routine health care operations such as business planning and development.
     
   • Appointment reminders.
     
   • Other treatment choices.
     
   • Health-related benefits or services.
     
   • Fundraising activities.
     
   • News or media-gathering activities.
     
   • People such as family or friends who are involved in your care or payment for your care.
     
   • Disaster relief efforts to notify your family of your condition, status, and location.
     
   • Research.
     
   • To prevent a serious threat to health or safety.
     
   • Organ and tissue donation.
     
   • Military authorities if you are a member of U.S. or foreign armed forces.
     
   • Worker’s compensation or similar programs in cases of work-related injuries or illnesses.
     
   • Public health disclosures including disease, injury, and disability prevention.
     • Reporting births and deaths.
       
     • Reporting reactions related to food, medicine, or products.
       
     • Reporting cases of abuse and neglect.
       
     • Notifying about recalls.
       
     • If you may be exposed to, or in danger of, exposing others to infectious diseases.
       
     
     
   • Health oversight activities such as licensing and accrediting agencies.
     
   • Legal requirements, proceedings, and lawsuits.
     
   • Law enforcement.
     
   • Coroner, medical examiners, and funeral directors.
     
   • National security and intelligence activities.
     
   • Protective services to the U.S. president and other important people.
     
   • Correctional institutions if you are an inmate and if they require your information.
     
   • Hospital directories, including:
     • Your name
       
     • General condition
       
     • Location in the hospital
       
     
     
   
   
4. You have the following rights regarding your health care information. For all of the following requests, please refer to the contact information at the end of this Notice.
   
   • Right to Inspect and Copy. You have the right to look over and get a copy of your personal health information. For a copy of the information, there is a fee. We may deny your request to look over or get a copy in certain limited circumstances. If we deny you, in most cases, you may have the denial reviewed by another health care professional. We will agree to the outcome of the review.
     
   • Right to Request an Amendment or Addendum. If you feel that health care information we have about you is incorrect or incomplete, you may ask us to change the information or add to the record. UCSF is not required to accept the change or addition for the following reasons:
     • If we did not create it.
       
     • If it is not part of your health care information kept by or for us.
       
     • If we do not allow you to inspect or copy it (psychotherapy notes, drug/alcohol abuse, HIV information).
       
     • If it is accurate and complete.
       
     
     A change or addition cannot be longer than 250 words per alleged incomplete or incorrect item in your record.
     
   • Right to an Accounting of Disclosures. You have the right to get a list of certain disclosures we have made of your health information (accounting). Your request may only be for the previous 6 years and may not include dates before April 14, 2003. You have a right to ask for one accounting within any 12 months at no cost. We will charge you a fee if you ask for another accounting in that same 12 months.
     
   • Right to Request Restrictions. You have the right to request a restriction on the health information we use or disclose about you for treatment, payment, or health care operations. You have the right to ask that we limit the health information about you to someone who cares for you or pays for your care. In your request, you must tell us what information you want to limit. You also must tell us whether you want to limit our use, disclosure, or both and to whom you want the limits to apply. If we agree, it must be in writing, and we will abide by your request unless we need the information for your emergency treatment.
     
   • Right to Request Confidential Communications. You have the right to ask that we contact you about health care matters in a certain way or at a certain place. For example, you may ask that we contact you only at home or only by mail.
     
   • Right to a Paper Copy of this Notice. You have the right to a paper copy of this Notice. You may ask us to give you a copy of this Notice at any time. Even if you have agreed to receive this Notice electronically, you still have the right to get a paper copy of this Notice.
     
   • Copies of this Notice are available on our website.
     
   
   
5. Questions & Complaints. If you believe that we have violated your privacy rights, you may file a complaint with us. You may also file a complaint with the Secretary of the Department of Health and Human Services. Please submit all complaints in writing. We will not take action against you for filing a complaint. If you have questions, please refer to the contact information at the end of this Notice.
   
6. Other Uses of Health Care Information. Only with your written permission will we make other uses and disclosures of health care information not covered by this Notice. If you give us permission to use or disclose your health information, you may cancel that permission, in writing, at any time. If you cancel your permission, we will no longer use or disclose your health information for the reasons covered by your written permission. You understand that we are unable to take back any disclosures we have already made with your permission. You also understand that we will keep our records of the care provided to you as required by law.
   

Contact Information/Address:

XXX School of Dentistry Address here:

Phone here:

Complaints.

Address here:

Phone here:

	Acknowledgments

 
Sincere gratitude goes to Dr. Ichiro Kawachi, Professor of Social Epidemiology and Director of the Harvard Center for Society and Health, for sharing the state-level social capital data. The authors also thank Dr. Alice Horowitz, National Institute for Dental and Craniofacial Research, for encouraging work in health literacy among dental researchers. The authors thank Terri Sonoda, Analyst for the UCSF Center to Address Disparities in Children’s Oral Health, for her assistance formatting the manuscript. The authors also thank the four anonymous reviewers for their constructive criticism of the initial version of the manuscript. Finally, thanks go to the dental school administrators for providing copies of their Notices of Privacy Practices despite their busy schedules. This research was performed as part of the UCSF Summer Research Fellowship and supported in part by research grant U.S. DHHS NIH NIDCR U54 DE 14251. Anh Ha was awarded second place in the predoctoral research category for this work at the National Oral Health Conference in Little Rock, AR, by the American Association of Public Health Dentistry.

This article is dedicated to the memory of Dr. Umo Isong, our friend and colleague, who continues to inspire us in our efforts to improve the health of the public.

	Footnotes

 
Anh T. Ha is a first-year dental student, University of California, San Francisco, School of Dentistry; Dr. Gansky is an Associate Professor, Center to Address Disparities in Children’s Oral Health, Department of Preventive and Restorative Dental Sciences, Division of Oral Epidemiology and Dental Public Health, University of California, San Francisco, School of Dentistry. Direct correspondence and requests for reprints to Dr. Stuart A. Gansky, Department of Preventive and Restorative Dental Sciences, University of California, San Francisco, School of Dentistry, 3333 California St., Suite 495, San Francisco, CA 94143-1361; 415-502-8094 phone; 415-502-8447 fax; stuart.gansky{at}ucsf.edu.

This project was supported in part by U.S. DHHS NIH/NIDCR and NCMHD U54 DE 14251.

	REFERENCES

Top Abstract Materials, methods, and design Results Discussion Conclusions Appendix a Appendix b References

 

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