Polls

Americans are expressing deep concerns about the confidentiality of their medical information in a number of national polls. Fears are growing in the era of electronic medical records (EMRs) and Congressional proposals to build an interoperable national healthcare network.

While concerned about security (illegal access of their records by hackers and identity thieves) they are more worried about privacy (their medical information being seen and used by their people like employers, insurance companies, and consumer credit agencies). And, they should be concerned, since HIPAA currently does not allow them to control who has access to these records.

Millions Believe Personal Medical Information Has Been Lost or Stolen

According to the Harris Poll, four percent or an estimated nine million American adults believe that they or a family member have had confidential personal medical information either lost or stolen. Results of the poll of 2,454 adults surveyed online between June 9 and 16, 2008 by Harris Interactive, which was designed in collaboration with Dr. Alan F. Westin,* also include

  • About seven in ten (69%) adults have either read or heard about medical records with personal health information being lost or stolen from doctor’s offices, clinics, hospitals, health insurers, employers or government agencies. For over two-thirds of the general public to recall hearing about medical data breaches is a very high topic awareness figure;
  • When asked which medical records – computerized or paper – they believe may be lost or stolen most often, just under half (47%) think it is computerized records. About one in six (16%) think that paper records may be lost or stolen most often. Another quarter (23%) think that both computerized and paper records may be lost or stolen about equally;
  • Among those who have either heard about medical information being lost or stolen or have had the information lost, the percentage of those who think computerized records are lost most often increase to 51 percent and 54 percent.

View Full Poll

Majority Uncomfortable with Websites Customizing Content Based Visitors Personal Profiles (2008)

A majority of U.S. adults are skeptical about the practice of websites using information about a person’s online activity to customize website content. However, after being introduced to four potential recommendations for improving websites privacy and security policies, U.S. adults become somewhat more comforatble with the websites’ use of personal information

These are some results of a nationwide survey of 2,513 U.S. adults surveyed online between March 11 and 18, 2008 by Harris Interactive. This survey was designed in collaboration with Dr. Alan F. Westin*.

View the full poll online or download as a PDF

IOM Project Findings on Health Research & Privacy

This national survey that large majorities of the public continue to hold and apply very strong privacy perspectives in the health area.

  • The majority does not believe current law and organizational policies provide enough privacy protection
  • While a majority trusts health researchers on confidentiality, researchers do not get a free ride from the national majority
  • Four in ten consumers would insist on notice and express consent for researchers to use their PHI, with many important demographic groups higher
  • Has major implications for research efforts in EHR systems, online PHRs, disease databases or registries, etc.

Download the survey report and Dr. Westin’s presentation (PDF file).

National Survey on Electronic Personal Health Records

The survey results indicate most Americans are interested in accessing personal health information electronically and in ensuring that their health care providers have access to
their information. Majorities express strong interest in using electronic personal health
information to engage more and have more control over their care, which could affect both the quality of care they receive and the overall cost of health care. Yet, data suggest this interest is contingent on the extent to which the government and others establish sufficient privacy and confidentiality protections.

Download the survey results.

Privacy and EHR Systems

Can We Avoid a Looming Conflict?

  • Over 42% of the publc feel the potential privacy risks outweigh potential EHR benefits
  • 60% of the public wants advance explanations of EHR impacts and rights to choose how records are used
  • Could be a sharp bump ahead for EHR developers, as weak communications and a “just say yes” approach prevails
  • Especially if advocacy groups expand a “STOP EHR PROGRAMS” movement, as urged by the Patient Privacy Rights Coalition
  • This is already occuring in the UK, where 53% of the the public an 52% of GPs oppose the UK national EHR plan, with organized opposition

Download the presentation (PDF file).

Health Industry Insights, 2006

This national survey shows Americans are unaware of the U.S. government’s initiative to make Electronic Health Records (EHRs) available to citizens by 2014. Of the 1095 consumers surveyed:

  • 45% are confident the government will meet this goal; 43% are not confident.
  • An overwhelming majority of respondents (86%) are somewhat or very concerned about the health industry’s ability to protect the privacy of personal health information in deploying EHRs.
  • Consumers rank overcoming privacy/security (44%) as the top challenge in meeting the 2014 goal, followed by complexity and cooperation within the healthcare industry (24%).

View report abstract.

California HealthCare Foundation
“National Consumer Health Privacy Survey 2005″

This national consumer survey reveals Americans’ attitudes and concerns about health privacy and confidentiality in the wake of implementation of HIPAA.

  • 67% of Americans are “very concerned” or “somewhat concerned” about the privacy of their personal medical records
  • Recent privacy breaches have raised their level of concern
    • 24% are aware of specific breaches where personal information was compromised
    • 66% say they are more concerned about their medical records as a result
  • Americans are unaware of their rights
  • Americans are practicing “privacy-protective behaviors that can harm their health; 1 in 8 have put their health at risk by engaging in behavior they believe protects their medical privacy, such as:
    • Avoiding their regular doctor
    • Asking a doctor to alter a diagnosis
    • Paying privately for a test
    • Avoiding tests altogether
  • 52% said they were “very concerned” or “somewhat concerned” that insurance claims information might be used by an employer (an increase of 44% from the 1999 study

Visit CHCF.org for more information.

Gallup Survey – “Public Attitudes Toward Medical Privacy”
Commissioned by the Institute for Health Freedom

An overwhelming majority of Americans do not want the government or other third parties to have access to their medical records–including genetic information–without their permission. This deep concern about the confidentiality of their medical information in a Gallup survey.

  • 78 percent feel it is very important that their medical records be kept confidential
  • 93 percent say that medical and government researchers should not be allowed to study an individual’s genetic information unless they first obtain his or her consent
  • 92 percent oppose allowing government agencies to see their medical records without their permission
  • 82 percent object to insurance companies gaining access without permission
  • 67 percent oppose researchers seeing their medical records without the patient’s permission
  • 91 percent oppose a federal requirement to assign everyone a medical identification number, similar to a Social Security number, to create a national medical database.

July 2004 Harris Interactive Survey

When asked about the trend toward the healthcare system moving to keep medical records electronically, 68% of consumers felt this raised threats to their privacy and 66% were concerned about security breaches

Download the survey result (pdf file).

Harris Interactive Survey on Medical Privacy
February 8-13, 2005

  • 70% of adults are worried that sensitive health information might leak because of weak data security
  • 62% of adults are concerned that the existing federal health privacy rules protecting patient information will be reduced in the name of efficiency
  • 69% believe strong enough data security will not be installed in the new National Health Information Network (NHIN) being proposed by the federal government
  • 14% of the public now believe their personal medical information has been released improperly

Visit Privacy, Business & Law for more information.

How The Public Views Health Privacy
Survey Findings From 1978 to 2005
Program on Information Technology, Health Records & Privacy
Dr. Alan Weston

  • Surveys show consumers rate personal health information and financial information the two most sensitive types of consumer personal information
  • Consumers also express concerns about privacy and security in the current move to greater collection and use of medical records electronically
  • Persons with chronic and especially genetically-based health conditions express sharp concerns about circulation and use of their health status to deny them important consumer opportunities and benefits

Visit Privacy, Business & Law for more information.

*Dr. Alan F. Westin is a Professor of Public Law and Government Emeritus at Columbia University, Principal of the Privacy Consulting Group, and a noted authority on privacy issues.